Brain Stem, Sleep onset

[Fillmore]

I was diagnosed with "Atypical Trigeminal Neuralgia", atypical because the episodes come on gradually instead of suddenly, and because the episodes last longer than a few seconds and do not repeat.

I have a question - an MRI showed nerve root channel [canal?] narrowing and spondylosis at C4 C5 and [I forget, either 3-4 or 5-6] also - but when I asked my doctor if the MRI results had anything to do with TN, he said "NO. TRIGEMINAL NEURALGIA COMES FROM THE BRAIN STEM, NOT THE NECK VERTEBRAE"

But here, the description up top says C4-5 and nothing about brain stem.

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The big thing other than the episodes is that, because they come on slowly, I can mitigate them when they happen during the day and I am awake, but if they come on at night I sleep until they are "full on" attacks... which last between 1 and 2 hours at absolutely full voltage.

I am not kidding - the strongest pain known to medicine for a full hour, or two. Eye, nostril, upper jaw, and back around the head to the base of the skull.

So, I have a fear of going to bed. I sit up and sleep in my recliner most night, and so what eh. The thing is, I don't get the TN attacks when sitting up and sleeping.

What an odd bird I am, eh?

[Fillmore]

ps - mods - now I remember - I have posted here several times, and every time when I click on "post topic" I get a message saying I don't have permission, and it asks me to sign in... but the message is lost.
I am getting better at copying things before I hit send... so I saved it... but I think I lost several here, and gave up because it is bad for my TN to be in front of a monitor too long.
[perhaps I am confused, I dont sleep much]
[there, this one worked]

[Fillmore]

I found the notes I made - it is C4-5 and C5-6 that are the problem areas with my neck. but the Doc says the Trigeminal Nerve comes from the brain stem and not the neck so the neck spodylosis has nothing to do with the TN.

Is this what ya'll figger too? TN is brain stem?

[msmaggie]

hello Filmore - hope you got some sleep at least. My understanding is that all nerves (including the 10+ that just feed the face and head) come out the brain stem, and travel through the C-1 and C-2 vertebrae of your neck/spine and around to your face. So BOTH Is true - the trigeminal and all facial nerves come from the brainstem, but through the cervical vertebrae. I have TOTAL TN pain relief with Upper Cervical Chiropractic. (the fact that you have ATN doesn't matter here). UCCs are rare: here is the list for BC: Only registered and activated users can see links., Click Here To Register...
Upper Cervical chiro is NOT like regular chiro. Their basic aim is to align your atlas (C-1) with your skull and spine. I was off by only one degree, and my pain stopped when the UC chiro adjusted it to zero. We are talking mm of movement, and a major effect on our nerves. I have been pain free for over a year and am off all my pain meds. I have my life back. My sincere suggestion is to find a Upper Cervical chiro.

[EE03]

Fillmore, the brain stem in deeper inside the brain. Here is a link with a pictures to give you an idea of its location. The nerves that exit the spine at C4/5 involve other areas of the body and aren't involved with TN.

Only registered and activated users can see links., Click Here To Register...

I hope these pictures give you a better idea of what the doctor is informing you of. If you want more info regarding cervical spondylosis, try this link:

Only registered and activated users can see links., Click Here To Register...

Take care, ee

[Fillmore]

Images, Chiros, Thanks for replies

Well, thank you both for the excellent replies.

I did have some success, quite a few years ago now, with "some:" chiros - about 1 in 5 were able to adjust my neck without hurting me. Those "1s" really did help though, all the way down to my feet!!

I did not have TN [or ATN] then...

WOW - we interrupt this post to bring you hockey - it just became "FOUR to NOTHING for L.A.!!!" [I am pulling for LA, it will be nice for Canada's proudest Cup to be in that great city.]

I have been going through the images... lots there!

One on TN anatomy says "usually not awakened from sleep, but hits whan patient arises in morning" - I am awakened... and I think what has been saving me lately is that I wake up when the first symptoms start to show, and then I can keep it from coming on fully.

I wonder if any of you find the same?
- for me, it could be that when I am asleep I breath through my nose, the left nostril is a trigger and when sleeping I breathe heavily [I am supposing here] through it and that tweeks the nerve ending, my Doc says it makes sense, the nerve ending is the sensory part of it...

Sometimes I stuff a wad of tissue up my left nostril before going to bed on nights when I feel things coming on, but it can get blown out [this must sound hilarious to the non-TN people]. I don't want to use a nose-clamp because I won't sleep well breathing through my mouth, I want my right nostril open.

The other main trigger is sunlight in my left eye. I have an eye patch, sunglasses, pull my hat down low... and limit my time outdoors on sunny days [duh, when else would I be outside for very long, lol]

Doc agrees, same thing, keep the triggers down.

Now I am searching for "base of the skull" images because I have a very tender spot on the left part of it, half way between the ear and the neck... it is allways painfull with a TN attack, and when I get "neck headaches"... there is a tendon or something there, I press it and feel mild pains shooting everywhere around my head.


Go LA!! game over, 4-0, up 3... that 4th one will be hard to win, just watch NJ come back.

Thanks again, it is SOOOOO good to relate to other TNs, nobody else can imagine.


{why wont it post? "you do not have permission, log in AGAIN, - i am logged in - refresh...}

[EE03]

The spot between your ear and neck is probably one of the occipital nerves or the auricular nerve. When TN flares, it can cause other nerves to flare. The docs have told me it because the nucleus of the nerve is firing and communicating with other nerves, causing fall out of nerve firings. I can't explain it any better. I've recently developed migraine headaches and when I have a migraine, it causes my occipital nerves to go crazy along with the trigeminal nerve(although the T nerve is involved with migraines anyway). When the MHA subsides, I'm left with crazy TN and ON pain for days, sometimes a week, hence the discussions I've had with several of my docs regarding the communication of nerves. I didn't mean to run on with this, but I deal with all of this on a pretty constant basis as I have TN and ON, and now migraine headaches(MHA).

[msmaggie]

Filmore - check that site I gave you on my prior post. Hopefully you can find a certified upper cervical chiro somewhere near you. Your experience that 'some' chiros helped you could mean that they were certified in upper cervical work and thus I believe could help you again. It's really quite mechanical - just make sure you have your 'head on straight'....
Maggie

[Fillmore]

msmaggie - the closest appears to be Kelowna, a 5 hour drive [for me, some do it faster] and although I can almost feel I need that adjuctment, the trip would be it's own painfull hazard that would likely bring on an attack unless it is cloudy. I won't forget about it - Nelson Trail or Castlegar would be accessabe, I will keep my right eye open for an UCChiro

EE3 - I think you hit a nerve. The auricular nerve... might relate to my odd experience last night, although not exactly pertinant to TN or ATN... I wrote it out earlier, and had to re-post, so I will just copy/paste it here:

June 24th early hours:
I am having hallucinations. Or something - last night I had a disturbing experience that involved, possibly, an "aural hallucination". I was laying in bed, pillows propped up under the left side of my neck where all the trouble is, comfortably, and I think I went to sleep for a little while, I may have been dreaming for a little while, but then I was thinking I should get up - in order to end the dream. Who thinks a conscious thought while dreaming?

The "dream" [if that is what it was] involved what I believed to be a male person laying in bed behind me, facing my back, not touching, not sexual, and not my bed or my bedroom. It seemed to start as I was trying to go to sleep, and in the dream, we were trying to go to sleep. Then other people came in the room, not my room but it seemed I had not yet falled asleep 'tho I suppose I must have but - That scene continued for several minutes as I thought of getting out of bed to end the dream, but it was more like, "well, if I can't fall asleep I might as well get up".

So I decided to get up, but when I rolled over, "I rolled over on top of him". A distinctive SOUND began, it was pitched around an "F to C, an octave and a half above middle c on a piano", and sounded a bit like about 15 baby ducks or geese chirping anxiously as I lay there on my back. The longer I layed there the more intense it got. I stayed calm, and decided to NOT get up right away, to see if it would continue, as in "what IS this? where is it COMING from?" - it seemed to be coming from my left side where the bedroom wall is, and a window, which was open a crack but not from outside the window. The blinds were drawn closed. Or was it coming from beneath me?

And I felt some squirming under my back, barely noticable - maybe I imagined that just to make sense of the sound - I was thinking the sound was this "person" [in my bed] whom I had just rolled over on. That is what it seemed like at the time. I sleep alone ,

I stayed like that for about 10 long, long, seconds. Maybe just 5 sec... The urge to get off "him" was huge but I forced myself to stay right there on my back.

When I finally sat up on the edge of the bed, the sound stopped immediately; not a "peep", lol.

I stood up, went for the light switch. I felt uncomfortable to go back into the bedroom. I called a friend - a good friend, as it was about 3 am. but she came over anyway. She said her scalp tingled when she stood beside the bed, but I had told her the story so maybe it was the suggestion.

I thought I had gone to bed around 12:30, and had not slept, so I was surprised to see it was almost 2 hours later. I guess I may have been asleep for awhile.

I slept in the recliner for a few hours and woke up with a headache, eyes hurt, and some initial symptoms of my ATN attacks were coming on but now are easing off - it, the ATN [Atypical Trigeminal Neuralgia] often comes on when I am sleeping in bed, but hardly ever when I sleep in the recliner. I have tried various arrangments of pillows and positions...

Do you think I had an aural halucination? A ghost? Going nuts? I vote for all three of those. I have had people telling me I have had a ghost, or ghosts here. And, I have had a lot of "other people's dreams" where nothing is familiar.

It is 12 hours later now, since I got out of bed to the sound of a gaggle of gosslings screaching excitedly in my head, or outside my head perhaps, other-worldly, the wake-up headache is easing off...

Oh ya - i has having some pretty extreme TINITTUS yesterday afternoon and evening, it is milder now.

[Fillmore]

I should apologise for posting before doing my own research, but it does all relate to TN and "brain talk" - My sleep problems started with the onset of TN.

As Wiki explains, "Hypnagogia/hypnopompia is the transitional state between wakefulness and sleep" and HALLUCINATIONS can occur during this period.,
"Hypnagogic hallucinations and hypnopompic hallucinations are considered normal phenomena. Hypnagogic hallucinations can occur as one is falling asleep and hypnopompic hallucinations occur when one is waking up."

My experience was probably nothing more than that. Its just that hallucinating SOUNDS is new to me, and the fact that it carried on so long after I was sure I was awake, and not half-awake... and golly gee it DID go on until I stood up. It certainl;y seemed as if there were a sound... and even if it were in my head, it is NOT a sound I have heard before [re:"the Tetris effect"].

A lesion on the brain stem or on the auditory nerve, or pressure on the auditiory nerve [auricular nerve, sorry] from laying in a certain posiotion {none of this happens when I sleep sitting up in my recliner] could explain it?

PS - my Doc says I am not psychotic [as I curl up into a ball laughing loudly] [ ha ha, kidding!!]

[msmaggie]

Glad to hear you looked for the nearest UCC. Getting adjusted could also help with your sleep issues. I know it's a long drive, do you have anyone that would go with you? Getting adjusted could help your TN and understand why you have the pain to begin with. Just make sure that they know you are coming from a distance and would rather have the whole evaluation (consult, exam, xrays) plus the adjustment on one day instead of coming back.
maggie

[Fillmore]

I didn't see that there was a "next page", I just thought nobody replied.

msmaggie, that is something I would have forgot to do, about asking for the treatment the same day, you just saved me a very painfull trip to Kelowna. There are other therapists there I would like to see too... I need a "therapy vacation week"

Interestingly about my neck is that last night, and once a few days ago, I managed to sleep on my RIGHT side and none of the weirdness happened. My right thigh is the most consistently painfull area of my body, and sleeping on it is like chewing bar glasses without my dentures in [or like listening to Inhofe talk about clean coal] - very painfull.

As I sit here in the first hour after waking up from a "sleep on my right side" I have a mild pain on the right side of my neck, and into my shoulder... it may take some getting used to.

So I might conclude that just that slight pressure, or perhaps the position, of sleeping on my left side is tweeking the Trigeminal Nerve and/or the C4-5 nerve root area and thereby triggering a TN attack and/or these hallucinations... I have never heard of such a thing - have you? Anyone?

[JeanC]

Now I am searching for "base of the skull" images because I have a very tender spot on the left part of it, half way between the ear and the neck... it is allways painfull with a TN attack, and when I get "neck headaches"... there is a tendon or something there, I press it and feel mild pains shooting everywhere around my head.

Hi, Fillmore,

I was just skimming your thread here and saw what I quoted above and just had to reply - quickly as it's getting late, but I did want to mention this as I've had similar symptoms to what you describe. I know I don't have TN but my pain always feels like nerve pain. Turns out it is probably "referred pain" and/or myofascial pain (that's fascial as in fascia, connective tissue, not facial). i.e. a neuoromuscular kind of thing from what I suspect may be upper cervical vertebrae out of alignment. I was going to a chiropractor for lower back issues in March and once we got those straightened out he started working his way up my spine until the last few visits when I pointed out a tight muscle, one of my left suboccipital muscles (a short muscle that attaches to the back of the skull and the cervical spine) between the ear and the mid-line of the skull, just about where you describe your tender spot to be, that has been tight for 2 1/2 years and I felt was causing my face, neck and tooth pain - or vice-versa. I just didn't know what was causing it to be tight until he adjusted C1 (I think - some one of the upper vertebrae). This chiro doesn't do the same kind of treatment as the NUCCA people (our National UCC Assoc.), who use x-rays and just a few pounds of pressure to make these micro-adjustments of the upper vertabrae. It was more like a regular adjustment, but way up on my neck. I had asked him about UCC and was skeptical when he said he did that, but was glad he went ahead and did it, because like you, the nearest one to me listed on the Web sites is hours away. I was sore (but not the same kind of "pinched nerve" sore - more a muscle soreness) for about 5 days after the adjustment, even re-aggravating things further down between my shoulder blades initially, but then on that fifth day everything began to release and feel better. And now my neck doesn't make all those crunchy, grinding noises when I turn my head!

Anyway, it could be the muscle spasms in your neck that are causing the nerve pain in your face, rather than the other way around, especially since many of your symptoms are not typical of classic TN. Those spasms could be caused by misalignment at the top of the spine - could even be causing the narrowing of the nerve channels further down, or vice-versa. I'm no doctor, just relaying my experience as I too have trouble sleeping with this and a few other things you mention. I never thought I would go to a chiropractor but finally went for those lower back problems and now I wish I'd gone over two years ago when this started again (been here/done this before). My sleep has improved 100%. From getting 4-5 hours a night total to last night when I slept for 8 hours! I also do better on one side than the other. I expect to need a few more adjustments since this has been out for so long and that suboccipital muscle is still complaining some and still tight but when it first went into spasm it felt as big around as my thumb and now it's more like a thin rope and softer. A few months ago all the muscles in my left neck, shoulder and back felt like steel cables and now they feel like cotton ropes. Oh, yes, the chiro also put my skull back on my atlas at one point. It was just a mild "click."

So I agree with msmaggie in trying UCC and I do hope this person works out for you. I know how painful the drive will be and if you can get someone to drive you, that will help. Or try asking if they know of anyone closer to you before you get all the way out there. Do take it real easy for 3-5 days after any adjustments as the muscles need to re-acclimate to having the vertebrae back where they belong and it may take a while for the nerves to calm down again, but if this is your problem, they should improve pretty quickly. Then again it could be a combination of things so, one step at a time.

Good luck and do keep us posted.

P.S. I have trouble posting, too - login seems to time-out while I'm writing. Not sure what's up with that - haven't spent much time here since the recent upgrades. Will ask around. There is now an auto-save every 60 seconds, so you can get back most of what you wrote, but best to write in a word processor or text editor and then login, paste in and post quickly. Here's a link to an explanation of the auto-save feature - Only registered and activated users can see links., Click Here To Register...

[Fillmore]

I owe the three of you an apology - I am sorry I dropped off FOR 18 MONTHS!!

My life got turned upside down in several ways after my last post, and tonight I was reviewing my "current bookmarks" and this was at the top. What an 18 months it has been....

I had made enquiries about the NCC [is that the right term? I cannot see page 1 from here] chiro, but I never made the trip, partly because one of my "life upside down" issues was that my car broke down and there was no money to repair it, or for anything. But since then, things got better.

My life is coming back together. And, my "Face Pains" have either settled down on their own, or I have learned all the triggers and now I avoid the onset of TN.

Why? - because I have not slept in my bed for one year now and that has made a huge [helpful] difference in the headaches, the face pains, tingling in fingers, and even indigestion [IBS?]. Perhaps sleeping laying down is just one of those things we come to believe is normal, but is not. I sleep in my recliner, half sitting up, and only for a few hours at a time. It really helps!! - but if I could sleep 6 or 7 hours straight, things would be better. It is just an "emergency measure".

I have not had sleep paralysis or hallucinations since I started sleeping in my recliner. Combined with the bizarre dreams, the paralysis and hallucinations were making me crazy... I thought I was being abducted by Aliens for gosh sakes!! I am better now.

Now I have money, and my car is fixed up great, and when spring comes I am going to Kelowna for a week of therapies, NCC Chiro is first on the list.


There are many other details I could discuss, but I am sure you would rather not, lol. ET says Hi. [kidding]