Welcome to the Trigeminal Neuralgia (TN) Forum,
We always start our first posts to newcomers with a welcome and, though we're sorry you're here because it means you're in pain and/or have just been diagnosed with TN or one of its variations, we're glad you found us because you'll find a wealth of information, support, and understanding here and most of all - you'll realize you're not alone.
Please don't ask questions in this thread - please start a new thread with your introduction and questions.
The first thing to do is to visit the Trigeminal Neuralgia Association (TNA - non-profit group) Website at the following link (click on the line below to bring up the TNA home page in a new window) -
Only registered and activated users can see links., Click Here To Register...
The TNA also maintains a Patient Registry where they gather data on TN and related facial pain. Please visit the Patient Registry and fill out the form electronically or print it out and send it in. There's a Support Group area where you can download lists of Support Groups and Telephone contacts (for US, Canada, UK, Australia and a number of other countries). You can call the 800 numbers in the Contact Info for help in finding TN-literate doctors, neuros, dentists, info about TN.
Be sure to visit the Useful Websites sticky thread. That has all kinds of information in it about treatments, doctors, tutorials, etc. and many of those threads may help answer your initial questions. A few websites that are especially good for newbies that describe TN and its treatments (medical and surgical) are -
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Be sure to check out the interactive tutorial and the complete guide to TN in the sites above.
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Once you've read through some of the introductory websites above, then start a new thread introducing yourself to the family here, tell us your story and ask whatever questions you still have. You'll find lots of help and support here so welcome to the family.
Last edited by JeanC; 02-16-2007 at 06:34 PM.
#2
10-23-2006, 07:45 PM
JeanC
Distinguished Community Member Join Date: Oct 2006
Location: VT
Posts: 348
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
Tegretol
Tegretol is a very strong medication but it often works for TN pain. I lived on Tegretol for 13 years. I started at 200mg a day and by the time I was through I was up to 1200
Start a Pain Diary; get a neuro
If you haven't already, start a Pain Diary with a history of your pain and a daily log of your pain - description of the pain (sharp, dull, aching, stabbing, shock-like, throbbing, burning, etc.), intensity on a scale of 1-10, length of time the pain lasts, how often it strikes or if it is constant, and so on. Also, what medications you have tried, are currently on, times and doses, side effects, whether they work and how well, etc. Also record doctor visits, questions and answers, diagnoses, treatments, etc. TN is diagnosed mainly by extensive patient history and description of pain and eliminating other conditions with similar symptoms. There is no test or exam that can determine TN, unless a vascular compression of the Trigeminal Nerve ganglion happens to show on one of the newer, more sophisticated MRIs (thin cut, 3D with contrast, fiesta, ... even these may fail to show a compression that does show up during a Microvascular Decompression (MVD) surgery). "Regular" MRIs are generally used to eliminate other causes of neuralgia such as tumors or MS lesions and rarely show a compression.
If you don't have a neurologist yet, try to find one who specializes in TN or at least has experience in treating it - recent experience. It's a rare condition so experiened neuros are hard to find especially if you don't live near a major city or hospital, but it's critical that you find someone who knows about TN and current treatments. There are a number of meds to try - some new ones with fewer side effects - but they don't all work for everyone and you need to find someone who will work with you to get the best relief, not just throw a script at you and send you on your way, or insist you're too young to have TN because you're under 50. The many posters to this (TN) Forum had their first TN-type pain between 20 and 50 years of age (we have one who was diagnosed at 3 years old). Some may have gone years before they were diagnosed because it is so rare and many doctors, dentists, even neuros have never seen even one case.
While you're waiting for your copy of Striking Back to arrive, read back through the websites in the Useful Websites sticky and through past posts - look for thread titles with things like "new here," "newcomer", "just diagnosed" and anything that looks like it might be a new person and read others' stories - you may find someone whose story sounds similar to yours and want to compare notes some more. (If you need help navigating your way around the Forum and BrainTalk, there is a Frequently Asked Question (FAQ) area with info about general forum usage, posting, user maintenance and lots of info about the BrainTalk Communities including policies and history. Click on -> FAQ ).
Last edited by JeanC; 02-16-2007 at 06:37 PM.
#3
10-23-2006, 07:46 PM
mg a day.
None of the anti-convulsant drugs work overnight. Tegretol is a drug that needs to reach a therapeutic level in your bloodstream to be effective. That could take a week or two. Every time you increase the dose chances are you will have side effects. I remember having to hang on to the wall to walk. I couldn't stand, I was dizzy, I couldn't drive or work and I slept and slept. Those side effects diminish as your body adjusts to the medication. It could take a couple of weeks for the adjustment of each increased dose.
As long as you are not having an allergic reaction i would try to persevere through those nasty side effects so that you can reach a therapeutic level. Don't get me wrong, the side effects never completely go away, but they do become manageable. I remained more tired than usual and I often found it caused forgetfulness. I've heard it nicknamed "the stupid drug" because that's how you feel when you are on it. All of a sudden simple words go missing from your vocabulary. I opted for an MVD because I couldnt handle the side effects and the pain any longer. But I was on 1200 mg. which is close to the end of the line for that drug.
If the drug is causing headaches, try to see if some Extra Strength Tylenol will help get through the first week or so of adjustment. You can check with your doctor just to make sure that this is OK, but I never had a problem mixing Tylenol or Advil with Tegretol.
It is important to get a blood test every three months while on this drug. Tegretol is metabolized in the liver and therefore liver functions need to be checked. They also check for theraputic levels amongst other things.
Many drugs may affect the way that Tegretol is metabolized in the body, leading to higher or lower than expected levels of the medication in the blood. Talk to your doctor before taking any other medicines or even vitamins while taking Tegretol.
Tegretol may decrease the effectiveness of birth control pills. Alcohol and Tegretol are not a good combination either, as well, this is one of those drugs where mixing grapefruit and grapefruit juice with Tegretol could lead to potentially adverse effects.
There are many other drugs on the market today that handle TN however Tegretol still is one of the most commonly used drugs. Most of the drugs are anti-convulsants but some doctors use other types of drugs like anti-depressants as well.
It is important to realize that everyone is different, what works well for one of us does not necessarily work for someone else. Sometimes there needs to be a delicate balance reached between a cocktail of the different drugs. It is a difficult road for some of us to travel and you are in pain the whole time you are experimenting with the different drugs. It is important to hang in there and stay in touch with your doctor to let them know how you are reacting (sometimes easier said than done) while you find the right drug(s) for you.
__________________
Ella
We cannot direct the wind but we can adjust our sails
#4
10-23-2006, 07:50 PM
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
Other Common Drugs
Dr. Anthony Kauffman is one of the leading neurosurgeons in Canada to deal with Trigeminal Neuralgia. He is part of the Univeristy of Manitoba and this drug information was taken from his web site.
Drug Information website
Some of the other popular drugs to treat TN are: Phenytoin (Dilantin), Oxycarbazepine (Trileptal), and Gabapentin (Neurontin). Phenytoin was first introduced in 1942, and in 1962 Carbamazepine (Tegretol) became the most commonly used drug. Baclofen (Lioresal) may add to the effectiveness of these drugs. Recently, Neurontin has been widely used because of reduced side effects, although is more expensive and somewhat less effective then Tegretol. The anti-convulsants are thought to reduce TN attacks by decreasing the hyperactivity of the trigeminal nerve nucleus in the brain stem.
Trileptal (Oxycarbazepine)
Trileptal, or oxycarbemazepine, is a form of Tegretol that is becoming more widely prescribed for a variety of conditions. It has recently been found to be effective for some patients with trigeminal neuralgia. Like Tegretol, it is an anti-seizure drug, but the side effects are less severe and less frequently experienced.
The dose usually begins at 300 mg twice a day and is gradually increased to achieve pain control. The maximum dose is 2400-3000 mg per day. Common side effects are nausea, vomiting, dizziness, fatigue and tremors. Less frequent symptoms are rash, respiratory infections, double vision, and changes in electrolytes in blood. If you have had an allergic reaction to Tegretol (carbemazepine), then you should not try Trileptal. As with other anti-seizure medications, increasing and decreasing the dose should be gradual.
Phenytoin (Dilantin)
Phenytoin relieves pain in over half of TN sufferers at doses of 300 to 500 mg, divided into three doses per day. Phenytoin may also be administered intravenously to treat severe exacerbations of TN. The maximum dose depends upon the severity of the side effects that are experienced with the drug. These dose-dependant side effects include nystagmus (rapid movements of the eye), ataxia (decreased coordination), dysarthria (speech difficulty), ophthalmoplegia (paralysis of eye movements) as well as drowsiness and mental confusion. Other effects of the medication may include gingival hyperplasia (enlargement of the gums in the mouth) and hypertrichosis (excessive hair growth). Rare but serious complications may occur, including allergic skin rashes, liver damage and blood disorders.
Baclofen (Lioresal)
Baclofen is not as effective as Tegretol or Dilantin for TN, but may be used in combination with these medications. The starting dose of baclophen is usually 5 mg two or three times a day, and may be gradually increased. The usual dosage taken for complete pain relief is between 50 and 60 mg per day. Baclofen has a short duration of function so sufferers with severe TN may need to take doses every 3 to 4 hours.
The most common side effects associated with baclofen include drowsiness, dizziness, nausea and leg weakness. The incidence of these side effects is reduced by starting with a low dose of baclophen that is gradually increased. However, approximately one tenth of sufferers cannot tolerate baclofen. A rare complication is a confusional state that appears shortly after baclofen is started, but this resolves quickly when therapy is stopped. Baclofen should not be discontinued abruptly after prolonged use because hallucinations or seizures may occur. If these withdrawal symptoms do occur, the previous dose of baclofen is usually re-instituted and then gradually reduced.
Gabapentin (Neurontin)
Gabapentin is an anti-epileptic drug that is structurally related to the neurotransmitter GABA. This drug is almost as effective as Tegretol but involves fewer side effects. The starting dose is usually 300mg three times a day and this is increased to a maximal dose. The most common adverse reactions include somnolence (sleepiness), ataxia (decreased coordination), fatigue, and nystagmus (rapid movements of the eye). There is no known interaction with Tegretol or Dilantin, permitting usage of these drugs in combination with Neurontin. As with all of these drugs, rapid discontinuation should be avoided as severe withdrawal reactions may occur.
So there you have it. A virtual smorgasbord of TN drugs...none to be taken lightly and none to be taken without the strict supervision of your physician. However this shows you that your options are not limited to the one drug your doctor may have subscribed. Like I mentioned in the previous post, it may take a while to experiment and find just the right therapeutic dose or combination to get you the relief you need.
__________________
Ella
We cannot direct the wind but we can adjust our sails
#5
10-23-2006, 07:53 PM
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
MVD Decision
There are a number of options available to you in case the medications do not work for you, or if you find the side effects unacceptable. Some of those options include Gamma Knife, Radiofrequency, Glycerol Injections, Balloon Compression & Microvascular Decompression (MVD) to mention a few. My knowledge is with the MVD. Hopefully one of the other people who have had these other procedures will write to let you know how these are done.
Before I start let me just say, no two people are alike, and what is right for one may not be right for someone else.
This is my story of how I decided to go for the MVD. I am 49 year old woman who struggled for 13 years with TN before I made my decision. In July 2005 I had an MVD. Today I am pain free and medication free.
If I had known then what I know now, I would have never lost that much of my precious life.
If even 1 doctor had the guts and honesty to tell me "this will never get better and will never go away"....
If even 1 doctor had told me "the meds will have to be increased to keep you pain free as your life goes on"....
If even 1 doctor had told me "you are a young woman and an MVD will give you your life back".
All these things are true, yet no one said them. I always was told, "If the drugs work, then stay on the drugs". Those drugs compromised my life for so many years.
I opted for the MVD over the other procedures because it is the only procedure available that does not destroy the nerve. All the other procedures work by damaging or destroying the nerve in some way to give you relief of pain. The pain of Trigeminal Neuralgia is usually caused by a vessel (artery/vein) beating on the nerve and thus wearing away the myelin sheath - which in turn causes the nerve to misfire after a stimulus to the trigger area. The myelin is critical in how the signals travel along the nerve fibers so if it's worn or gone, things go all haywire in transmission of touch signals and they end up being sent to the brain as jolts of pain instead of light touch. During an MVD the root of the TN is examined and all offending arteries and veins are padded off using Teflon pads. This frees the Trigeminal Nerve and in most cases the pain is gone but the nerve is left intact and unharmed.
MVD is the most invasive of all the surgeries. It is cranial surgery and is performed by making a small incision usually about 3-4 inches behind the ear. Then a small area of skull is removed. They say about the size of a quarter. The surgeon then uses his tools and expertise to remove any offending veins or arteries compressing the trigeminal nerve and padding it off.
MVD has the highest success rate of all the TN procedures. The percentages differ depending on which report you read, but I have seen anything between 92-98% success rate.
Here is what Iā€™ve learned though. That general success rate means very little. The thing which is more important than the general statistics is the statistics of the surgeon you pick. Not all surgeons are equal and not all are necessarily very experienced in MVD surgery. The most important questions to ask your neurosurgeon are: How many of these surgeries have you preformed? What is your personal success rate and what do you consider to be a successful MVD? Some doctors will tell you ā€œbeing pain freeā€ and some will tell you a ā€œreduction in your medicationā€. The bottom line is you want to have this done by the very best surgeon you can find. Travel if you have to, but donā€™t settle for a doctor that is conveniently located to you, unless he is the best. This is major surgery and in the hands of an inexperienced doctor and team you may not get the results you are hoping for. You want someone with many MVD procedures under their belt. My doctor had done over 300 (at the time) in the past few years and his success rate was 95% to be completely pain free. I interviewed about 6 neurosurgeons over the years before I chose this one. Once again I cannot stress enough, the importance of your surgeon. Donā€™t let the desperation of your situation guide you into making a quick decision.
You will have an MRI at some point to not only see if there is something compressing the nerve, but to also rule out things like MS, tumors etc. It is very difficult to see compression on an MRI, however through advancements in that field there is an MRI available called a 3D thin cut MRI. This type of MRI has a better chance of showing compression, but again many people do not show compression on any of the imaging. I am one of those people. I had the MVD without any compression showing anywhere. On the advice of my surgeon (whom I trusted) I had the surgery. 2 arteries and 1 vein looped around the Trigeminal nerve were found. None of this showed on the MRI.
MVD is most successful in people who have Typical TN. If you have Atypical TN, it can still be successful however you will have to discuss the success rate with your surgeon.
There are many emotions involved in any surgery and this one is no exception. All I will say about this is the weeks before the surgery were so much worse for me emotionally, than after the surgery. I was an absolute basket case. After reading many others' experiences with MVD I see now that I was not unique. In most cases the fear of the unknown is far worse than the recovery of the surgery.
When I was trying to make the decision to have the MVD I looked for all the information I could find. I wanted personal experiences, not just textbook information. I had a hard time finding much so I decided at that time I would keep a diary of my MVD from day 1 to 6 months post surgery. Here is a link to that diary. It was written in real time, not after the fact. I hope it helps some of you make your decisions and then through your recovery.
MVD Diary
The recovery from MVD was not nearly as bad as I thought it would be. I was in ICU for 24 hours, then in a regular room for 2 days. Most of the uncomfortable surgical pain was diminished within 24 hours. The first day I was given Morphine, the 2nd day I went to Tylenol with Codeine and the last day in hospital I was only taking Extra Strength Tylenol to manage the pain. I stayed home for 3 weeks after the surgery before returning to my work, which is a desk job. If you have a job that requires more manual work you may want to wait a bit longer. Take your cues from how you feel and speak to your doctor. I was able to drive after 2 weeks, although turning my head to check the car's blind spot still hurt.
The incision is the last thing to heal and that can take a long time. Things like wearing glasses can be uncomfortable if the arm of the glasses sits on the incision. A small area behind your ear exactly where the incision is will be shaved. You can shower and wash your hair after a couple of days and my surgeon encouraged me to do that as it keeps the area clean. The staples come out after about 10-14 days and that takes less than a couple of minutes and is no big deal at all.
Here is a link to information that explains the procedure:
MVD Surgery
I know what you are going through now is just horrible. I wish you all the luck in the world on your journey to a decision that is right for you. I am on the forum regularly and am always available to answer any questions you may have. Please donā€™t hesitate to send me a PM (Private Message) or post a new thread. Good luck.
__________________
Ella
We cannot direct the wind but we can adjust our sails
baywatcher
Distinguished Community Member Join Date: Oct 2006
Posts: 971
If you've been diagnosed with Trigeminal Neuralgia or one of the other facial pain syndromes it may seem as though this is the end of life - or life as you know and enjoy it. It's not. Yes, it's a scary and unpleasant thought, living with a progressive neurological condition, or the alternative, trying surgeries and treatments that sound frightening. But - although it can be a challenge - it is one you can meet and manage. And take it from a long-term patient, things are changing all the time on both the drug front and the alternative treatment front and you have a much better prospect than patients of only ten or fifteen years ago.
Many doctors are still not familiar with the condition and even less are they all up to date on drugs and surgeries. You have found this site and you are beginning to do your own research, and when necessary you can help to educate whatever physicians (including specialists) that you will consult. Be somewhat cautious though: you can't believe everything you read and you must also be aware that all individuals are not the same and may react in different ways to the most commonly used medications. You and your own doctor will have to experiment until you find the right drug or drug combination to work for you. Dentists are even less likely to be informed, but the Trigeminal Neuralgia Association has packets of information that they will provide that will help bridge that gap and make dental work easier and less likely to cause additional trouble.
Finding a doctor you like and trust, one who will work with you, be supportive and welcome your input, take the time to listen and respond, all of this is really essential. If your first try at finding a neurologist isn't a successful match, try again. And don't neglect the importance of a good primary care doctor. Often (especially in rural areas) neurologists are few and may not be located near you. Having a good doctor who knows you as a whole patient and person is one of the best resources you can have. Your regular blood tests and medication management can be done at regular office visits and if you need help in a hurry you're more likely to get a timely response.
This forum and its generous members is a great resource. After reading the preliminary material you'll still have your own questions, and you can hardly find a better source of answers. Your doctor may be caring and concerned, but the patients here have a breadth of experience and a depth of empathy that is unmatched. And even if it seems like a silly question - how reassuring it is to have someone else post, "gee, me too". Join in, we all have so much to offer one another. Welcome. Nancy
Last edited by baywatcher; 10-25-2006 at 11:08 AM. Reason: spelling
#7
10-26-2006, 07:57 AM
ToTs11
Distinguished Community Member Join Date: Oct 2006
Location: London, UK
Posts: 216
Helpful Tips for Caregivers of TN Sufferers.
Caring for someone with Trigeminal Neuralgia
This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.
It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.
TN is unpredictable. It can sometimes be triggered, for example, by a facial movement, such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions, though, the same “trigger” will have no affect at all. It’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.
There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. The drugs can have unpleasant side effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds another spectrum to the illness – that of fear and very often of depression.
It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be “zapzapzap” continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!
The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company all round really!
You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion. (They are even seemingly unresponsive to their nearest and dearest, but not through choice.) If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.
This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraines or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.
If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations (you may only get a grunt by way of a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.
Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it isn’t much fun! It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated.
To be in the company of a fellow sufferer is comforting beyond belief, but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.
The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them. The best starting point would be the book, Striking Back – The Trigeminal Neuralgia and Face Pain Handbook, written by an American neurosurgeon and a journalist and former sufferer, which is available direct from the TNA-UK/US.
The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have “seized up” and it would be helpful if you could take over the conversation until he/she recovers or explain to friends why your nearest and dearest has stopped “mid chew”, so to speak. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.
The sufferer may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary!
In the case of couples, the disease may also have an affect on the intimate side of the relationship since the sufferer will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!
Because the anti-epileptic drugs are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. If the TN sufferer is on high doses of medication, their memory could be badly affected. They may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, appear confused or muddled. To some this is a great source of embarrassment and it can make them very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. Try not to take over the organisation of their lives, but if you are able to “catch them when they fall” and not get irritated at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.
In an emergency, it is possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all.
The sufferer may have visited several practitioners over many years, been disbelieved and patronised, they may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication, they may have lost their quality of life, suffered desperation and disillusionment.
As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure. You can help.
Good luck!
Last edited by ToTs11; 12-15-2006 at 05:13 AM.
#8
08-16-2007, 06:30 PM
kjagelle
New Community Member Join Date: Jun 2007
Posts: 15
hi jean, thanks for welcoming me. I'm having a hard time figuring this site out. i sent a few threads but they aren't showing up. how do i do it properly? thanks, k.
#9
08-27-2007, 04:29 PM
saraiderin
Distinguished Community Member Join Date: Aug 2007
Location: Portland, Oregon
Posts: 254
please talk to me...
My name is Sarah. I am new here. We had a TNA support group here but, it went away 8 months ago. I have been dealing with a Type One TN relaspe since June 1, 2005. Am fighting with the insurance so I can go to the Neurosurgeon I want to go to.
My biggest fear is the MVD will fail and I will have to live the rest of my life with this pain. I also have Familar Essential Tremor that is made much worse by the pain of the TN.
I am scared and just need to be reminded I am not alone.
Thanks,
Sarah
#10
09-09-2007, 01:32 PM
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
Tips for Keeping Dental work as painless as possible
This is directly copied from the TNA website
TNA Tips for Keeping Dental work as painless as possible:
Go to the dentist when you’re not hurting. Make sure your dentist knows you have TN so he or she will be flexible to schedule you appointments (maybe even on short notice) during periods when your pain goes into remission. This will also help the dental staff to understand in case you have to cancel in case TN pain flares up right before an appointment.
Be well medicated. If you don’t have remissions or must have dental work done during an active pain cycle, consult your doctor so you’re on an optimal dose of medicine. To prevent a breakthrough, your dentist may want to increase the dose of any TN medications you are taking for a day or so before and after the procedure. Also try to schedule your appointment during the time of day when you’re least likely to get pain or when your medication is at peak effectiveness (usually about one hour after taking a dose). Several hours before the procedure, take a pain-killing medication such as codeine. Take it again after the procedure. The goal is to have at least five hours after the procedure during which you’re pain free.
Topical anesthetics. Most dental patients need numbing compounds mainly for tooth repairs, crown work, extractions and the like. However, even teeth-cleaning and exams may bring on pain for facial pain patients. Topical sprays or gels can be used to temporarily numb the gums.
Touch the sensitive area last. If there’s a trigger zone that usually sets off the pain, ask the dentist or hygienist to examine and clean everything else first.
Switch local anesthetics. If you need treatment, discuss with your dentist the type of anesthetic to be used. Ask your dentist to use bupivicaine without epinephrine for the local anesthetic. Bupivicaine is long-acting, so you’re less likely to need multiple injections, which might increase the risk of pain. You may want to ask in advance, because the average dentist doesn’t keep this particular drug in stock.
Epinephrine is a vasoconstrictor; it’s sometimes added to local anesthetics to prolong their numbing effect. Epinephrine can trigger nerve pain.
Consider the injection point. Ask the dentist if possible to inject the local anesthetic at a site as far as possible from known, active TN trigger points.
A knockout. If all else fails and you absolutely need dental work, discuss the possibility of a general anesthetic (either IV or inhaled) to put you to sleep while the work is being done. This type of anesthesia can reduce emotional trauma.
__________________
Ella
We cannot direct the wind but we can adjust our sails
These are my notes from a National TNA Conference (Portland in 2006) presentation by Dr. Joseph Vaughn, a pain management doc, on Medical Management of Trigeminal Neuralgia. In 25 minutes he covered more than 20 different meds! As always, check with your doctor about anything that interests you, including dosages and combinations!
"He recommends patients keep a pain diary, and he acknowledges seasonal variations in pain. He'll use adjunctive narcotics until pain is under control and then avoids them unless necessary again. He'll adjust to test for remissions and taper to the lowest effective dose to reduce side effects if unable to discontinue them completely. Prefers monotherapy (one drug at a time) but will go to polytherapy, esp. with Baclofen (as adjunct).
Meds he discussed and my notes (which are very incomplete - for more info check your favorite drug website, or the one at the top of the page (above the flowers) Drug Info) -
Carbamazepine/Trileptal/Tegretol-XR/Carbatrol - felt to work in 70-80% of TN patients, with 90% experiencing significant relief within 48 hours (!). Note: this was where he said he rarely uses generic meds due to the variation in strength - which he said can be +/- 40%! (Could explain why some people don't get relief until they get to higher doses...just me conjecturing.)
Dilantin (phenytoin) - can be effective if Carbamazepine doesn't help (but not if there's a rash in reaction to CBZ).
Neurontin (gabapentin) - very effective, well tolerated, can titrate rapidly, take 3-6 times/day and up to 2400 mg./dose.
Lyrica (pregabalin) - New, longer-lasting than Neurontin and as easily tolerated. Good results for TN and ATN.
Baclofen (lioresal) - good booster, 2nd line med. Can be used at >300 mg./day.
Keppra (levetiracetam)- not usually front line, yet. No drug interaction so good in combination. Well tolerated.
Lamictal (lamotrigine) - slower titration. Easy to tolerate. Good if nothing else works. Don't use with Depakote --> rash!
Zanaflex (tizanadine) - good for sleep; adjunctive.
Orap (pimozide) - more effective than Tegretol, but more s/es - adjunctive?
Depakote (valproic acid) - sodium blocker, weight gain, drug interactions.
Topamax (topiramate) - good for migraines and so for TN.
Zonegran (zonisamide) - "remains to be seen" - watch for rash.
Gabitril (tiagabine) - good for 6 mos.; adjunctive.
Klonopin (clonazepam) - sedating, addictive, difficult to taper.
Clonodine - adjunctive, lowers BP, patch? Polytherapy.
Tricyclic Antidepressants (Elavil, Pamelor, Desyrel, trazodone) - sedating - use at bedtime. Adjunctive.
Selective Serotonin Reuptake Inhibitors (SSRI antidepressants) - Prozac, Lexapro and Celexa are rarely effective in treating pain and could make worse. Cymbalta, he said was disappointing in his practice except for some for severe, lancinating pain. Zoloft and Paxil sedating - good at bedtime.
Namenda (memantine) - Calcium Blocker. New one - very exciting, he says, but remains to be seen how good for TN.
Campral - New and untried, but exciting.
Cytotec (misoprostol) - no serious side effects, easy to use.
Topical Capsaicin - can be effective and used with oral meds but messy - requires gloves. "
There were also talks on Compounded Transdermal Delivery (custom formulated creams) and Botox injections. So there are more and more things to try, folks. Do your research and if something looks good, bring it up with your doctor.
#13
03-23-2009, 08:28 AM
martinyves
New Community Member Join Date: Mar 2009
Posts: 4
Hi
This is not a reply but a question. Sorry, I'm lost on this site. It's been 12 days now since my MVD for HFS. My left hearing seems damaged, I can still hear but there is a lot of electrical noise. My eye still twitches but I do think it's better than before surgery. What really concerns me is this feeling of being unbalanced. I can sort of walk OK but am fearful to drive or ride my bike. Is normal post op recovery ? Any comments would be greatly appreciated.
Cheers
Martin
#14
06-16-2009, 11:35 AM
GladdyD
New Community Member Join Date: Jun 2009
Location: CT
Posts: 1
Think this is the wrong site
I am lost in this site too. I am waiting to have MVD. I don't think you'll get your answers her. I think you should try another.
#15
09-04-2009, 05:46 PM
Allen2
Community Member Join Date: Aug 2009
Location: Peoria, AZ
Posts: 33
Greetings! Long ago I was diagnosed with Atypical Facial Pain after being diagnosed w everything else! I have over a period of 10 yrs tried most of the anti-epileptics and pain relievers w only modest success. Now I am using Lyrica along w Ultram for pain and Trazadone at night for sleep(w a little Klonipin thrown in!). The illness and meds side effects have made me homebound and afflicted w the Zombie effect: other than that, I'm doing great Oh, my name is Al
#16
11-23-2009, 05:57 PM
myree
New Community Member Join Date: Nov 2009
Posts: 1
newbie
i am 37 have been told i have trigeminal neuralgia a month ago i,m from queensland australia going off to brisbane today to see a neurlogist tommorow
#17
02-28-2010, 02:58 PM
huisamengc
New Community Member Join Date: Feb 2010
Posts: 1
TN after surgery
I had an operation 18/12/2009 for bone transplant to be followed by implants: initially all went well, but pain escaleted after 2 weeks, to such an extend that I was diagnosed with TN on 9/1/2010.
I am struggling with my medication: the MFO surgeon suggested that I play around with the medication (started with Tegretol, but was put on Baclofen which also upset my tummy! So eventually I was put onto Lyrica 75mg and Epillum 200mg twice daily: I cannot manage, really!
Please help!!
Quote:
Originally Posted by JeanC
Welcome to the Trigeminal Neuralgia (TN) Forum,
Welcome to the Trigeminal Neuralgia (TN) Forum,
We always start our first posts to newcomers with a welcome and, though we're sorry you're here because it means you're in pain and/or have just been diagnosed with TN or one of its variations, we're glad you found us because you'll find a wealth of information, support, and understanding here and most of all - you'll realize you're not alone.
Please don't ask questions in this thread - please start a new thread with your introduction and questions.
The first thing to do is to visit the Trigeminal Neuralgia Association (TNA - non-profit group) Website at the following link (click on the line below to bring up the TNA home page in a new window) -
Only registered and activated users can see links., Click Here To Register...
The TNA also maintains a Patient Registry where they gather data on TN and related facial pain. Please visit the Patient Registry and fill out the form electronically or print it out and send it in. There's a Support Group area where you can download lists of Support Groups and Telephone contacts (for US, Canada, UK, Australia and a number of other countries). You can call the 800 numbers in the Contact Info for help in finding TN-literate doctors, neuros, dentists, info about TN.
Be sure to visit the Useful Websites sticky thread. That has all kinds of information in it about treatments, doctors, tutorials, etc. and many of those threads may help answer your initial questions. A few websites that are especially good for newbies that describe TN and its treatments (medical and surgical) are -
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Be sure to check out the interactive tutorial and the complete guide to TN in the sites above.
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Once you've read through some of the introductory websites above, then start a new thread introducing yourself to the family here, tell us your story and ask whatever questions you still have. You'll find lots of help and support here so welcome to the family.
Last edited by JeanC; 02-16-2007 at 06:34 PM.
We always start our first posts to newcomers with a welcome and, though we're sorry you're here because it means you're in pain and/or have just been diagnosed with TN or one of its variations, we're glad you found us because you'll find a wealth of information, support, and understanding here and most of all - you'll realize you're not alone.
Please don't ask questions in this thread - please start a new thread with your introduction and questions.
The first thing to do is to visit the Trigeminal Neuralgia Association (TNA - non-profit group) Website at the following link (click on the line below to bring up the TNA home page in a new window) -
Only registered and activated users can see links., Click Here To Register...
The TNA also maintains a Patient Registry where they gather data on TN and related facial pain. Please visit the Patient Registry and fill out the form electronically or print it out and send it in. There's a Support Group area where you can download lists of Support Groups and Telephone contacts (for US, Canada, UK, Australia and a number of other countries). You can call the 800 numbers in the Contact Info for help in finding TN-literate doctors, neuros, dentists, info about TN.
Be sure to visit the Useful Websites sticky thread. That has all kinds of information in it about treatments, doctors, tutorials, etc. and many of those threads may help answer your initial questions. A few websites that are especially good for newbies that describe TN and its treatments (medical and surgical) are -
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Be sure to check out the interactive tutorial and the complete guide to TN in the sites above.
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Once you've read through some of the introductory websites above, then start a new thread introducing yourself to the family here, tell us your story and ask whatever questions you still have. You'll find lots of help and support here so welcome to the family.
Last edited by JeanC; 02-16-2007 at 06:34 PM.
#2
10-23-2006, 07:45 PM
JeanC
Distinguished Community Member Join Date: Oct 2006
Location: VT
Posts: 348
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
Tegretol
Tegretol is a very strong medication but it often works for TN pain. I lived on Tegretol for 13 years. I started at 200mg a day and by the time I was through I was up to 1200
Start a Pain Diary; get a neuro
If you haven't already, start a Pain Diary with a history of your pain and a daily log of your pain - description of the pain (sharp, dull, aching, stabbing, shock-like, throbbing, burning, etc.), intensity on a scale of 1-10, length of time the pain lasts, how often it strikes or if it is constant, and so on. Also, what medications you have tried, are currently on, times and doses, side effects, whether they work and how well, etc. Also record doctor visits, questions and answers, diagnoses, treatments, etc. TN is diagnosed mainly by extensive patient history and description of pain and eliminating other conditions with similar symptoms. There is no test or exam that can determine TN, unless a vascular compression of the Trigeminal Nerve ganglion happens to show on one of the newer, more sophisticated MRIs (thin cut, 3D with contrast, fiesta, ... even these may fail to show a compression that does show up during a Microvascular Decompression (MVD) surgery). "Regular" MRIs are generally used to eliminate other causes of neuralgia such as tumors or MS lesions and rarely show a compression.
If you don't have a neurologist yet, try to find one who specializes in TN or at least has experience in treating it - recent experience. It's a rare condition so experiened neuros are hard to find especially if you don't live near a major city or hospital, but it's critical that you find someone who knows about TN and current treatments. There are a number of meds to try - some new ones with fewer side effects - but they don't all work for everyone and you need to find someone who will work with you to get the best relief, not just throw a script at you and send you on your way, or insist you're too young to have TN because you're under 50. The many posters to this (TN) Forum had their first TN-type pain between 20 and 50 years of age (we have one who was diagnosed at 3 years old). Some may have gone years before they were diagnosed because it is so rare and many doctors, dentists, even neuros have never seen even one case.
While you're waiting for your copy of Striking Back to arrive, read back through the websites in the Useful Websites sticky and through past posts - look for thread titles with things like "new here," "newcomer", "just diagnosed" and anything that looks like it might be a new person and read others' stories - you may find someone whose story sounds similar to yours and want to compare notes some more. (If you need help navigating your way around the Forum and BrainTalk, there is a Frequently Asked Question (FAQ) area with info about general forum usage, posting, user maintenance and lots of info about the BrainTalk Communities including policies and history. Click on -> FAQ ).
Last edited by JeanC; 02-16-2007 at 06:37 PM.
#3
10-23-2006, 07:46 PM
mg a day.
None of the anti-convulsant drugs work overnight. Tegretol is a drug that needs to reach a therapeutic level in your bloodstream to be effective. That could take a week or two. Every time you increase the dose chances are you will have side effects. I remember having to hang on to the wall to walk. I couldn't stand, I was dizzy, I couldn't drive or work and I slept and slept. Those side effects diminish as your body adjusts to the medication. It could take a couple of weeks for the adjustment of each increased dose.
As long as you are not having an allergic reaction i would try to persevere through those nasty side effects so that you can reach a therapeutic level. Don't get me wrong, the side effects never completely go away, but they do become manageable. I remained more tired than usual and I often found it caused forgetfulness. I've heard it nicknamed "the stupid drug" because that's how you feel when you are on it. All of a sudden simple words go missing from your vocabulary. I opted for an MVD because I couldnt handle the side effects and the pain any longer. But I was on 1200 mg. which is close to the end of the line for that drug.
If the drug is causing headaches, try to see if some Extra Strength Tylenol will help get through the first week or so of adjustment. You can check with your doctor just to make sure that this is OK, but I never had a problem mixing Tylenol or Advil with Tegretol.
It is important to get a blood test every three months while on this drug. Tegretol is metabolized in the liver and therefore liver functions need to be checked. They also check for theraputic levels amongst other things.
Many drugs may affect the way that Tegretol is metabolized in the body, leading to higher or lower than expected levels of the medication in the blood. Talk to your doctor before taking any other medicines or even vitamins while taking Tegretol.
Tegretol may decrease the effectiveness of birth control pills. Alcohol and Tegretol are not a good combination either, as well, this is one of those drugs where mixing grapefruit and grapefruit juice with Tegretol could lead to potentially adverse effects.
There are many other drugs on the market today that handle TN however Tegretol still is one of the most commonly used drugs. Most of the drugs are anti-convulsants but some doctors use other types of drugs like anti-depressants as well.
It is important to realize that everyone is different, what works well for one of us does not necessarily work for someone else. Sometimes there needs to be a delicate balance reached between a cocktail of the different drugs. It is a difficult road for some of us to travel and you are in pain the whole time you are experimenting with the different drugs. It is important to hang in there and stay in touch with your doctor to let them know how you are reacting (sometimes easier said than done) while you find the right drug(s) for you.
__________________
Ella
We cannot direct the wind but we can adjust our sails
#4
10-23-2006, 07:50 PM
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
Other Common Drugs
Dr. Anthony Kauffman is one of the leading neurosurgeons in Canada to deal with Trigeminal Neuralgia. He is part of the Univeristy of Manitoba and this drug information was taken from his web site.
Drug Information website
Some of the other popular drugs to treat TN are: Phenytoin (Dilantin), Oxycarbazepine (Trileptal), and Gabapentin (Neurontin). Phenytoin was first introduced in 1942, and in 1962 Carbamazepine (Tegretol) became the most commonly used drug. Baclofen (Lioresal) may add to the effectiveness of these drugs. Recently, Neurontin has been widely used because of reduced side effects, although is more expensive and somewhat less effective then Tegretol. The anti-convulsants are thought to reduce TN attacks by decreasing the hyperactivity of the trigeminal nerve nucleus in the brain stem.
Trileptal (Oxycarbazepine)
Trileptal, or oxycarbemazepine, is a form of Tegretol that is becoming more widely prescribed for a variety of conditions. It has recently been found to be effective for some patients with trigeminal neuralgia. Like Tegretol, it is an anti-seizure drug, but the side effects are less severe and less frequently experienced.
The dose usually begins at 300 mg twice a day and is gradually increased to achieve pain control. The maximum dose is 2400-3000 mg per day. Common side effects are nausea, vomiting, dizziness, fatigue and tremors. Less frequent symptoms are rash, respiratory infections, double vision, and changes in electrolytes in blood. If you have had an allergic reaction to Tegretol (carbemazepine), then you should not try Trileptal. As with other anti-seizure medications, increasing and decreasing the dose should be gradual.
Phenytoin (Dilantin)
Phenytoin relieves pain in over half of TN sufferers at doses of 300 to 500 mg, divided into three doses per day. Phenytoin may also be administered intravenously to treat severe exacerbations of TN. The maximum dose depends upon the severity of the side effects that are experienced with the drug. These dose-dependant side effects include nystagmus (rapid movements of the eye), ataxia (decreased coordination), dysarthria (speech difficulty), ophthalmoplegia (paralysis of eye movements) as well as drowsiness and mental confusion. Other effects of the medication may include gingival hyperplasia (enlargement of the gums in the mouth) and hypertrichosis (excessive hair growth). Rare but serious complications may occur, including allergic skin rashes, liver damage and blood disorders.
Baclofen (Lioresal)
Baclofen is not as effective as Tegretol or Dilantin for TN, but may be used in combination with these medications. The starting dose of baclophen is usually 5 mg two or three times a day, and may be gradually increased. The usual dosage taken for complete pain relief is between 50 and 60 mg per day. Baclofen has a short duration of function so sufferers with severe TN may need to take doses every 3 to 4 hours.
The most common side effects associated with baclofen include drowsiness, dizziness, nausea and leg weakness. The incidence of these side effects is reduced by starting with a low dose of baclophen that is gradually increased. However, approximately one tenth of sufferers cannot tolerate baclofen. A rare complication is a confusional state that appears shortly after baclofen is started, but this resolves quickly when therapy is stopped. Baclofen should not be discontinued abruptly after prolonged use because hallucinations or seizures may occur. If these withdrawal symptoms do occur, the previous dose of baclofen is usually re-instituted and then gradually reduced.
Gabapentin (Neurontin)
Gabapentin is an anti-epileptic drug that is structurally related to the neurotransmitter GABA. This drug is almost as effective as Tegretol but involves fewer side effects. The starting dose is usually 300mg three times a day and this is increased to a maximal dose. The most common adverse reactions include somnolence (sleepiness), ataxia (decreased coordination), fatigue, and nystagmus (rapid movements of the eye). There is no known interaction with Tegretol or Dilantin, permitting usage of these drugs in combination with Neurontin. As with all of these drugs, rapid discontinuation should be avoided as severe withdrawal reactions may occur.
So there you have it. A virtual smorgasbord of TN drugs...none to be taken lightly and none to be taken without the strict supervision of your physician. However this shows you that your options are not limited to the one drug your doctor may have subscribed. Like I mentioned in the previous post, it may take a while to experiment and find just the right therapeutic dose or combination to get you the relief you need.
__________________
Ella
We cannot direct the wind but we can adjust our sails
#5
10-23-2006, 07:53 PM
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
MVD Decision
There are a number of options available to you in case the medications do not work for you, or if you find the side effects unacceptable. Some of those options include Gamma Knife, Radiofrequency, Glycerol Injections, Balloon Compression & Microvascular Decompression (MVD) to mention a few. My knowledge is with the MVD. Hopefully one of the other people who have had these other procedures will write to let you know how these are done.
Before I start let me just say, no two people are alike, and what is right for one may not be right for someone else.
This is my story of how I decided to go for the MVD. I am 49 year old woman who struggled for 13 years with TN before I made my decision. In July 2005 I had an MVD. Today I am pain free and medication free.
If I had known then what I know now, I would have never lost that much of my precious life.
If even 1 doctor had the guts and honesty to tell me "this will never get better and will never go away"....
If even 1 doctor had told me "the meds will have to be increased to keep you pain free as your life goes on"....
If even 1 doctor had told me "you are a young woman and an MVD will give you your life back".
All these things are true, yet no one said them. I always was told, "If the drugs work, then stay on the drugs". Those drugs compromised my life for so many years.
I opted for the MVD over the other procedures because it is the only procedure available that does not destroy the nerve. All the other procedures work by damaging or destroying the nerve in some way to give you relief of pain. The pain of Trigeminal Neuralgia is usually caused by a vessel (artery/vein) beating on the nerve and thus wearing away the myelin sheath - which in turn causes the nerve to misfire after a stimulus to the trigger area. The myelin is critical in how the signals travel along the nerve fibers so if it's worn or gone, things go all haywire in transmission of touch signals and they end up being sent to the brain as jolts of pain instead of light touch. During an MVD the root of the TN is examined and all offending arteries and veins are padded off using Teflon pads. This frees the Trigeminal Nerve and in most cases the pain is gone but the nerve is left intact and unharmed.
MVD is the most invasive of all the surgeries. It is cranial surgery and is performed by making a small incision usually about 3-4 inches behind the ear. Then a small area of skull is removed. They say about the size of a quarter. The surgeon then uses his tools and expertise to remove any offending veins or arteries compressing the trigeminal nerve and padding it off.
MVD has the highest success rate of all the TN procedures. The percentages differ depending on which report you read, but I have seen anything between 92-98% success rate.
Here is what Iā€™ve learned though. That general success rate means very little. The thing which is more important than the general statistics is the statistics of the surgeon you pick. Not all surgeons are equal and not all are necessarily very experienced in MVD surgery. The most important questions to ask your neurosurgeon are: How many of these surgeries have you preformed? What is your personal success rate and what do you consider to be a successful MVD? Some doctors will tell you ā€œbeing pain freeā€ and some will tell you a ā€œreduction in your medicationā€. The bottom line is you want to have this done by the very best surgeon you can find. Travel if you have to, but donā€™t settle for a doctor that is conveniently located to you, unless he is the best. This is major surgery and in the hands of an inexperienced doctor and team you may not get the results you are hoping for. You want someone with many MVD procedures under their belt. My doctor had done over 300 (at the time) in the past few years and his success rate was 95% to be completely pain free. I interviewed about 6 neurosurgeons over the years before I chose this one. Once again I cannot stress enough, the importance of your surgeon. Donā€™t let the desperation of your situation guide you into making a quick decision.
You will have an MRI at some point to not only see if there is something compressing the nerve, but to also rule out things like MS, tumors etc. It is very difficult to see compression on an MRI, however through advancements in that field there is an MRI available called a 3D thin cut MRI. This type of MRI has a better chance of showing compression, but again many people do not show compression on any of the imaging. I am one of those people. I had the MVD without any compression showing anywhere. On the advice of my surgeon (whom I trusted) I had the surgery. 2 arteries and 1 vein looped around the Trigeminal nerve were found. None of this showed on the MRI.
MVD is most successful in people who have Typical TN. If you have Atypical TN, it can still be successful however you will have to discuss the success rate with your surgeon.
There are many emotions involved in any surgery and this one is no exception. All I will say about this is the weeks before the surgery were so much worse for me emotionally, than after the surgery. I was an absolute basket case. After reading many others' experiences with MVD I see now that I was not unique. In most cases the fear of the unknown is far worse than the recovery of the surgery.
When I was trying to make the decision to have the MVD I looked for all the information I could find. I wanted personal experiences, not just textbook information. I had a hard time finding much so I decided at that time I would keep a diary of my MVD from day 1 to 6 months post surgery. Here is a link to that diary. It was written in real time, not after the fact. I hope it helps some of you make your decisions and then through your recovery.
MVD Diary
The recovery from MVD was not nearly as bad as I thought it would be. I was in ICU for 24 hours, then in a regular room for 2 days. Most of the uncomfortable surgical pain was diminished within 24 hours. The first day I was given Morphine, the 2nd day I went to Tylenol with Codeine and the last day in hospital I was only taking Extra Strength Tylenol to manage the pain. I stayed home for 3 weeks after the surgery before returning to my work, which is a desk job. If you have a job that requires more manual work you may want to wait a bit longer. Take your cues from how you feel and speak to your doctor. I was able to drive after 2 weeks, although turning my head to check the car's blind spot still hurt.
The incision is the last thing to heal and that can take a long time. Things like wearing glasses can be uncomfortable if the arm of the glasses sits on the incision. A small area behind your ear exactly where the incision is will be shaved. You can shower and wash your hair after a couple of days and my surgeon encouraged me to do that as it keeps the area clean. The staples come out after about 10-14 days and that takes less than a couple of minutes and is no big deal at all.
Here is a link to information that explains the procedure:
MVD Surgery
I know what you are going through now is just horrible. I wish you all the luck in the world on your journey to a decision that is right for you. I am on the forum regularly and am always available to answer any questions you may have. Please donā€™t hesitate to send me a PM (Private Message) or post a new thread. Good luck.
__________________
Ella
We cannot direct the wind but we can adjust our sails
baywatcher
Distinguished Community Member Join Date: Oct 2006
Posts: 971
If you've been diagnosed with Trigeminal Neuralgia or one of the other facial pain syndromes it may seem as though this is the end of life - or life as you know and enjoy it. It's not. Yes, it's a scary and unpleasant thought, living with a progressive neurological condition, or the alternative, trying surgeries and treatments that sound frightening. But - although it can be a challenge - it is one you can meet and manage. And take it from a long-term patient, things are changing all the time on both the drug front and the alternative treatment front and you have a much better prospect than patients of only ten or fifteen years ago.
Many doctors are still not familiar with the condition and even less are they all up to date on drugs and surgeries. You have found this site and you are beginning to do your own research, and when necessary you can help to educate whatever physicians (including specialists) that you will consult. Be somewhat cautious though: you can't believe everything you read and you must also be aware that all individuals are not the same and may react in different ways to the most commonly used medications. You and your own doctor will have to experiment until you find the right drug or drug combination to work for you. Dentists are even less likely to be informed, but the Trigeminal Neuralgia Association has packets of information that they will provide that will help bridge that gap and make dental work easier and less likely to cause additional trouble.
Finding a doctor you like and trust, one who will work with you, be supportive and welcome your input, take the time to listen and respond, all of this is really essential. If your first try at finding a neurologist isn't a successful match, try again. And don't neglect the importance of a good primary care doctor. Often (especially in rural areas) neurologists are few and may not be located near you. Having a good doctor who knows you as a whole patient and person is one of the best resources you can have. Your regular blood tests and medication management can be done at regular office visits and if you need help in a hurry you're more likely to get a timely response.
This forum and its generous members is a great resource. After reading the preliminary material you'll still have your own questions, and you can hardly find a better source of answers. Your doctor may be caring and concerned, but the patients here have a breadth of experience and a depth of empathy that is unmatched. And even if it seems like a silly question - how reassuring it is to have someone else post, "gee, me too". Join in, we all have so much to offer one another. Welcome. Nancy
Last edited by baywatcher; 10-25-2006 at 11:08 AM. Reason: spelling
#7
10-26-2006, 07:57 AM
ToTs11
Distinguished Community Member Join Date: Oct 2006
Location: London, UK
Posts: 216
Helpful Tips for Caregivers of TN Sufferers.
Caring for someone with Trigeminal Neuralgia
This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.
It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.
TN is unpredictable. It can sometimes be triggered, for example, by a facial movement, such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions, though, the same “trigger” will have no affect at all. It’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.
There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. The drugs can have unpleasant side effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds another spectrum to the illness – that of fear and very often of depression.
It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be “zapzapzap” continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!
The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company all round really!
You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion. (They are even seemingly unresponsive to their nearest and dearest, but not through choice.) If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.
This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraines or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.
If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations (you may only get a grunt by way of a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.
Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it isn’t much fun! It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated.
To be in the company of a fellow sufferer is comforting beyond belief, but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.
The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them. The best starting point would be the book, Striking Back – The Trigeminal Neuralgia and Face Pain Handbook, written by an American neurosurgeon and a journalist and former sufferer, which is available direct from the TNA-UK/US.
The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have “seized up” and it would be helpful if you could take over the conversation until he/she recovers or explain to friends why your nearest and dearest has stopped “mid chew”, so to speak. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.
The sufferer may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary!
In the case of couples, the disease may also have an affect on the intimate side of the relationship since the sufferer will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!
Because the anti-epileptic drugs are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. If the TN sufferer is on high doses of medication, their memory could be badly affected. They may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, appear confused or muddled. To some this is a great source of embarrassment and it can make them very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. Try not to take over the organisation of their lives, but if you are able to “catch them when they fall” and not get irritated at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.
In an emergency, it is possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all.
The sufferer may have visited several practitioners over many years, been disbelieved and patronised, they may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication, they may have lost their quality of life, suffered desperation and disillusionment.
As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure. You can help.
Good luck!
Last edited by ToTs11; 12-15-2006 at 05:13 AM.
#8
08-16-2007, 06:30 PM
kjagelle
New Community Member Join Date: Jun 2007
Posts: 15
hi jean, thanks for welcoming me. I'm having a hard time figuring this site out. i sent a few threads but they aren't showing up. how do i do it properly? thanks, k.
#9
08-27-2007, 04:29 PM
saraiderin
Distinguished Community Member Join Date: Aug 2007
Location: Portland, Oregon
Posts: 254
please talk to me...
My name is Sarah. I am new here. We had a TNA support group here but, it went away 8 months ago. I have been dealing with a Type One TN relaspe since June 1, 2005. Am fighting with the insurance so I can go to the Neurosurgeon I want to go to.
My biggest fear is the MVD will fail and I will have to live the rest of my life with this pain. I also have Familar Essential Tremor that is made much worse by the pain of the TN.
I am scared and just need to be reminded I am not alone.
Thanks,
Sarah
#10
09-09-2007, 01:32 PM
ella138
Distinguished Community Member Join Date: Oct 2006
Location: Toronto, Canada
Posts: 409
Tips for Keeping Dental work as painless as possible
This is directly copied from the TNA website
TNA Tips for Keeping Dental work as painless as possible:
Go to the dentist when you’re not hurting. Make sure your dentist knows you have TN so he or she will be flexible to schedule you appointments (maybe even on short notice) during periods when your pain goes into remission. This will also help the dental staff to understand in case you have to cancel in case TN pain flares up right before an appointment.
Be well medicated. If you don’t have remissions or must have dental work done during an active pain cycle, consult your doctor so you’re on an optimal dose of medicine. To prevent a breakthrough, your dentist may want to increase the dose of any TN medications you are taking for a day or so before and after the procedure. Also try to schedule your appointment during the time of day when you’re least likely to get pain or when your medication is at peak effectiveness (usually about one hour after taking a dose). Several hours before the procedure, take a pain-killing medication such as codeine. Take it again after the procedure. The goal is to have at least five hours after the procedure during which you’re pain free.
Topical anesthetics. Most dental patients need numbing compounds mainly for tooth repairs, crown work, extractions and the like. However, even teeth-cleaning and exams may bring on pain for facial pain patients. Topical sprays or gels can be used to temporarily numb the gums.
Touch the sensitive area last. If there’s a trigger zone that usually sets off the pain, ask the dentist or hygienist to examine and clean everything else first.
Switch local anesthetics. If you need treatment, discuss with your dentist the type of anesthetic to be used. Ask your dentist to use bupivicaine without epinephrine for the local anesthetic. Bupivicaine is long-acting, so you’re less likely to need multiple injections, which might increase the risk of pain. You may want to ask in advance, because the average dentist doesn’t keep this particular drug in stock.
Epinephrine is a vasoconstrictor; it’s sometimes added to local anesthetics to prolong their numbing effect. Epinephrine can trigger nerve pain.
Consider the injection point. Ask the dentist if possible to inject the local anesthetic at a site as far as possible from known, active TN trigger points.
A knockout. If all else fails and you absolutely need dental work, discuss the possibility of a general anesthetic (either IV or inhaled) to put you to sleep while the work is being done. This type of anesthesia can reduce emotional trauma.
__________________
Ella
We cannot direct the wind but we can adjust our sails
These are my notes from a National TNA Conference (Portland in 2006) presentation by Dr. Joseph Vaughn, a pain management doc, on Medical Management of Trigeminal Neuralgia. In 25 minutes he covered more than 20 different meds! As always, check with your doctor about anything that interests you, including dosages and combinations!
"He recommends patients keep a pain diary, and he acknowledges seasonal variations in pain. He'll use adjunctive narcotics until pain is under control and then avoids them unless necessary again. He'll adjust to test for remissions and taper to the lowest effective dose to reduce side effects if unable to discontinue them completely. Prefers monotherapy (one drug at a time) but will go to polytherapy, esp. with Baclofen (as adjunct).
Meds he discussed and my notes (which are very incomplete - for more info check your favorite drug website, or the one at the top of the page (above the flowers) Drug Info) -
Carbamazepine/Trileptal/Tegretol-XR/Carbatrol - felt to work in 70-80% of TN patients, with 90% experiencing significant relief within 48 hours (!). Note: this was where he said he rarely uses generic meds due to the variation in strength - which he said can be +/- 40%! (Could explain why some people don't get relief until they get to higher doses...just me conjecturing.)
Dilantin (phenytoin) - can be effective if Carbamazepine doesn't help (but not if there's a rash in reaction to CBZ).
Neurontin (gabapentin) - very effective, well tolerated, can titrate rapidly, take 3-6 times/day and up to 2400 mg./dose.
Lyrica (pregabalin) - New, longer-lasting than Neurontin and as easily tolerated. Good results for TN and ATN.
Baclofen (lioresal) - good booster, 2nd line med. Can be used at >300 mg./day.
Keppra (levetiracetam)- not usually front line, yet. No drug interaction so good in combination. Well tolerated.
Lamictal (lamotrigine) - slower titration. Easy to tolerate. Good if nothing else works. Don't use with Depakote --> rash!
Zanaflex (tizanadine) - good for sleep; adjunctive.
Orap (pimozide) - more effective than Tegretol, but more s/es - adjunctive?
Depakote (valproic acid) - sodium blocker, weight gain, drug interactions.
Topamax (topiramate) - good for migraines and so for TN.
Zonegran (zonisamide) - "remains to be seen" - watch for rash.
Gabitril (tiagabine) - good for 6 mos.; adjunctive.
Klonopin (clonazepam) - sedating, addictive, difficult to taper.
Clonodine - adjunctive, lowers BP, patch? Polytherapy.
Tricyclic Antidepressants (Elavil, Pamelor, Desyrel, trazodone) - sedating - use at bedtime. Adjunctive.
Selective Serotonin Reuptake Inhibitors (SSRI antidepressants) - Prozac, Lexapro and Celexa are rarely effective in treating pain and could make worse. Cymbalta, he said was disappointing in his practice except for some for severe, lancinating pain. Zoloft and Paxil sedating - good at bedtime.
Namenda (memantine) - Calcium Blocker. New one - very exciting, he says, but remains to be seen how good for TN.
Campral - New and untried, but exciting.
Cytotec (misoprostol) - no serious side effects, easy to use.
Topical Capsaicin - can be effective and used with oral meds but messy - requires gloves. "
There were also talks on Compounded Transdermal Delivery (custom formulated creams) and Botox injections. So there are more and more things to try, folks. Do your research and if something looks good, bring it up with your doctor.
#13
03-23-2009, 08:28 AM
martinyves
New Community Member Join Date: Mar 2009
Posts: 4
Hi
This is not a reply but a question. Sorry, I'm lost on this site. It's been 12 days now since my MVD for HFS. My left hearing seems damaged, I can still hear but there is a lot of electrical noise. My eye still twitches but I do think it's better than before surgery. What really concerns me is this feeling of being unbalanced. I can sort of walk OK but am fearful to drive or ride my bike. Is normal post op recovery ? Any comments would be greatly appreciated.
Cheers
Martin
#14
06-16-2009, 11:35 AM
GladdyD
New Community Member Join Date: Jun 2009
Location: CT
Posts: 1
Think this is the wrong site
I am lost in this site too. I am waiting to have MVD. I don't think you'll get your answers her. I think you should try another.
#15
09-04-2009, 05:46 PM
Allen2
Community Member Join Date: Aug 2009
Location: Peoria, AZ
Posts: 33
Greetings! Long ago I was diagnosed with Atypical Facial Pain after being diagnosed w everything else! I have over a period of 10 yrs tried most of the anti-epileptics and pain relievers w only modest success. Now I am using Lyrica along w Ultram for pain and Trazadone at night for sleep(w a little Klonipin thrown in!). The illness and meds side effects have made me homebound and afflicted w the Zombie effect: other than that, I'm doing great Oh, my name is Al
#16
11-23-2009, 05:57 PM
myree
New Community Member Join Date: Nov 2009
Posts: 1
newbie
i am 37 have been told i have trigeminal neuralgia a month ago i,m from queensland australia going off to brisbane today to see a neurlogist tommorow
#17
02-28-2010, 02:58 PM
huisamengc
New Community Member Join Date: Feb 2010
Posts: 1
TN after surgery
I had an operation 18/12/2009 for bone transplant to be followed by implants: initially all went well, but pain escaleted after 2 weeks, to such an extend that I was diagnosed with TN on 9/1/2010.
I am struggling with my medication: the MFO surgeon suggested that I play around with the medication (started with Tegretol, but was put on Baclofen which also upset my tummy! So eventually I was put onto Lyrica 75mg and Epillum 200mg twice daily: I cannot manage, really!
Please help!!
Quote:
Originally Posted by JeanC
Welcome to the Trigeminal Neuralgia (TN) Forum,
Welcome to the Trigeminal Neuralgia (TN) Forum,
We always start our first posts to newcomers with a welcome and, though we're sorry you're here because it means you're in pain and/or have just been diagnosed with TN or one of its variations, we're glad you found us because you'll find a wealth of information, support, and understanding here and most of all - you'll realize you're not alone.
Please don't ask questions in this thread - please start a new thread with your introduction and questions.
The first thing to do is to visit the Trigeminal Neuralgia Association (TNA - non-profit group) Website at the following link (click on the line below to bring up the TNA home page in a new window) -
Only registered and activated users can see links., Click Here To Register...
The TNA also maintains a Patient Registry where they gather data on TN and related facial pain. Please visit the Patient Registry and fill out the form electronically or print it out and send it in. There's a Support Group area where you can download lists of Support Groups and Telephone contacts (for US, Canada, UK, Australia and a number of other countries). You can call the 800 numbers in the Contact Info for help in finding TN-literate doctors, neuros, dentists, info about TN.
Be sure to visit the Useful Websites sticky thread. That has all kinds of information in it about treatments, doctors, tutorials, etc. and many of those threads may help answer your initial questions. A few websites that are especially good for newbies that describe TN and its treatments (medical and surgical) are -
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Be sure to check out the interactive tutorial and the complete guide to TN in the sites above.
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Once you've read through some of the introductory websites above, then start a new thread introducing yourself to the family here, tell us your story and ask whatever questions you still have. You'll find lots of help and support here so welcome to the family.
Last edited by JeanC; 02-16-2007 at 06:34 PM.