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Old 08-14-2010, 11:05 PM
Lisamn26 Lisamn26 is offline
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Default Seizure triggers

Hi I am new to this forum. My husband has recently been diagnosed with epilepsy and we have only seen his neuro a few times over the past 6 months or so and briefly at that. I have been trying to gather as much info about this as possible. So far he has been prescribed Trilipital - which caused multiple seizures once it built up in his system. Dilantin which quickly caused Dilantin toxicity, Keppra which caused severe mood swings however he only had one seizure during this treatment but he could not tolerant his moods and insisted to be taken off. Then Vimpat which he has been taking all alone which did not help at all and I am now wandering if it possibly made them worse also. Finally at this moment he is taking Depakote along with the Vimpat. The Depakote was helping control his tonic clonic seizures but he was still having mild partial seizures and then started having complex partials and then forgot to take his meds he was 4 hours late and ended up having 4 tonic clonic seizures. Anyway so far my insurance is refusing to cover Vimpat and the office has given us samples we ran out Friday and the office never returned our call and now he has been without his meds however we increased his depakote (he was only taking 2 a day due to tremors even though prescribed 3, the tremors subsided) so now he's taking 3 a day and so far no seizures! But I am wandering first of all does everyone have such a hard time getting in to see the neuro? Or getting a hold of them? It takes us 2 months to get an appt. Also what are the known triggers for seizures? He tends to have them whenever we get out in the heat I've noticed. But other than that there has been no noticable triggers that I've seen. And are there certain vitamin deficiencies that could possibly increase seizures? What about hormones. I've read women tend to have them around their menstrual cycle. My husband just had his thyroid removed which controls alot of hormones and he is on hormone replacement. They noticed his enlarged thyroid gland approximately the same time he started having seizures. We hoped once the thyroid was out that his seizures would decrease but there doesn't appear to be any change. He is extremely lethargic all the time. Any advice or help would be greatly appreciated thanks! Oh I live in TN so if anyone knows a good neuro out here who specializes in epilepsy I am looking for another neuro to get a second opinion! Thanks!
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Old 08-15-2010, 01:29 AM
annie annie is offline
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Sorry you are having so many problems. Yes, what you are describing is pretty standard. There are good doctors out there from what I hear, but I have never found one.

If he suddenly started having constant GM seizures immediately after having his thyroid removed, that does seem to be linked.

There are neuros who specialize in epilepsy. You need to find one. Many of them are not good either, but they do know more.

Keep a diary of everything that is going on. What he eats, how much he sleeps, all the little daily things. And keep track faithfully of every single pill and every single seizure. This may help you see a pattern, if there is one, and the doctor needs to see it.

We are all here to help you. You are starting down a long road, but you have a lot of company.
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Old 08-15-2010, 07:33 AM
Porkette Porkette is offline
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Hi Lisamn26,

Welcome to the forum! I have found that taking more AED's (seizure meds) will cause more seizures for me. I've taken ever single one that your husband has for absence (petit mal) complex partial and clonic seizures. I found that keppra can sometimes increase seizures for people. I just started vimpat this past Wednesday to see if that helps me.
I had brain surgery done back in 1994 on the right temporal lobe and I was doing great then when I went through my change the seizures increased. My Epileptologist told me there was a possibility that this could happen all do to hormones changing. I've found that taking vitamin B12 1000 mcg. once a day has helped me, cut back on the carbohydrates and eat food high in fat this is known as the ketogenic diet. Some of the following things can trigger seizures: stress, lack of sleep, hormones changing, a low pressure in the weather, the time of yr. sometimes a person wil have more seizures in the spring and summer while others have more seizures in the fall and winter this is known as "seasonal seizure", bright lights, hot water hitting your head like when a person takes a shower, nutra sweet ex. diet soda, cell phones because both nutra sweet and cell phones trigger more electrical activity in the brain, also loud sounds known as audio seizures and a high metabolism can sometimes cause more seizures because it leads to more activity in the brain. If your husband gets any warning that he's going to have a seizure tell him to tighten up all the muscles in his body and make his hands into tight fists this will often stop the seizure. I learned about this back in the 1970's and it has stopped a lot of my complex partial seizures. Also tell your husband to cut back on starch foods because that turns into sugar which can sometimes lead to seizures. Here's wishing you and your husband the best of luck and May God Bless You Both!

Sue
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Old 08-16-2010, 10:12 AM
Bahamaroot Bahamaroot is offline
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Finding an Epileptologist(a neuro that specializes in seizures) will be a big help. My epi told me to take a multi-vitamin every day because AED's can deplete vitamins in the body.

If Keppra did a good job in controlling his seizures you may want to give it another try. B-vitamins have helped alot of people with "Kepp-rage". Those nasty mood swings you described.

Most of the side effects you have described with the different AED's are very common but most subside over time. AED's are some of the hardest meds to adjust to. You are still at the beginning of this very long journey. You will have to give some of these treatments more time before you will know if the side effects will subside and how effective they really are. It took me months to get used to some AED's.

Best wishes to you and your husband. I hope you find some answers real soon.
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Old 08-17-2010, 12:07 PM
Stinkerbell Stinkerbell is offline
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Speaking directly to the triggers (as asked in the thread topic), all can I do is tell you my experience. I am very new to this and have a LOT to learn...both about myself and the disorder/disease.

Fluorescent light bothers me 100% of the time. Even if it looks still (as in, not flickering) I will get warning signs and then a seizure if I dont get out quickly enough. White flooring with wide open spaces triggers some symptoms, too. WalMart is, obviously, totally out of the question for me (though Ive been ok for very quick trips in with my sunglasses on).

Heat and humidity are my enemy. I look at the weather on 3 different websites multiple times per day to determine my schedule. It's ridiculous but necessary. So far, Ive managed to keep my drivers license and I want to keep it that way.

Stress, lack of sleep, pain and sickness all seem to add to the likeliness of me having a seizure and/or migraine, but not a TRIGGER, really.

I definitely have had a heck of a time getting in to see neuros. Im in Boston which is sort of a mecca of medical care but getting an appointment, even on an urgent basis, is close to impossible. Even when I was having seizures DAILY, I was always told to go to the ER (which is totally unhelpful, since they just make sure you're ok and tell you to call your neuro. Pffft). I make appointments in advance, and call to beg if Im in great need but so far, its just really really difficult.
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Old 08-19-2010, 11:24 AM
howdydave howdydave is offline
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Howdy Lisa!

Just about anything might be a trigger!

You need to keep a seizure journal containing as much detail as possible.
In time, a pattern may emerge: Food, missed meals, lack of sleep, too much sleep, alcohol, caffene, nicotine, hay fever, florescent lights (the flicker,) etc.

The pattern that I eventually found was that I would have seizures a few days before the onset of a cold or some other illness. I also had seizures a day or 2 after getting a cut or scrape. The conclusion was that the big trigger for me is when my immune system kicks in to fight something off.

I have had my best luck with epilepsy doctors associated with a medical school.
How close are you to a college with a medical school?

I think there are 2 medical schools in Tennesee:
  • Quillin College of Medicine at East Tennessee State University located in Johnson City
  • University of Tennessee Health Science Center in Memphis.
I don't see a neurology department listed at Quillin.
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Last edited by howdydave; 08-20-2010 at 10:41 AM.
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Old 08-20-2010, 04:37 PM
Aki Aki is offline
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There is an Epilepsy Center in the Neurology Center at the Vanderbilt Clinic at Vanderbilt University Medical Center in Nashville, too.
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Old 08-26-2010, 05:51 PM
Lisamn26 Lisamn26 is offline
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Thanks everyone for your responses I really appreciate you taking the time to reply. So far the Depakote has kept his seizures under control for the past two weeks and he is no longer taking the vimpat. I still think that his vimpat possibly increased his seizures. It was the only thing he was taking for a while and his seizures were really bad during that time. There are many seizure triggers I had not heard of before so I am trying to continue to learn as much as I can. I had thought about taking him to Vanderbilit before I don't know how to go about having someone there see him. It has been so frustrating to have someone put him on meds and never really run any tests or give him any information. I have two children and I want to do everything possible to ensure that they never have to go through this if that is possible. And if they do go through thiss knowing what caused my husbands hopefully will help us know the best treatment for them. Again thanks so much for all the advice!
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