New kid here....

[Lindat]

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Hey everyone, new kid here. Had my first attack of TN two years ago this month. Went thru the usual mountain of tests,and er visits,then stupid nuerologist put me on a phentonyl patch (sp), and it put me in an almost coma for three weeks. No lie, it almost killed me. When my husband insisted they removed it, I came back To "life" and my pain was gone. I had nothing for almost two years, then this October,,,wow, it hit like a freight train! New doctor put me on Lyrica and tegretol. It works great, but it seems like every 6-8 weeks or so, I have to increase the dose. That worries me, I mean, how hight a dose can I go? I've tried to lower the doses, but the pain this time will not go away. I'm a 51 y/o Mom with three kids who are all still at home, and my Husband is out of work right now. ( no pressure there!) For me cold seems to be a trigger, and today it's cold and snowy. I have a jack** of a boss in a very high stress job. I had to take last Monday off of work because it was bad, and I have to go into work tomorrow and try to deal with the cold. Mine is on my left side, and I have one tooth left on the bottom on that side, when it gets bad, that tooth seems to move up, does anyone else get that? Husband wants to move to a warmer climate to get me out of the cold, but the kids refuse, and I don't want to leave my kids....( he's my second husband and their step dad).I'm not sure that would help much anyway. I'm kinda tired of trying to be cheerful, and hiding the pain from everyone. Sorry I sound so negative, just a bad day today...but I'm glad I found this place. Anyone have any advise for me? My Doctor said that I have the rare kind of TN that doesn't come with triggers, it just stays. Lucky me. Anyway, thanks for listening.

[abby61400]

Hi. I'm sorry to hear that you are having such a hard time. I'm having a flare-up right now too, but I'm not sure if it's the cold or not. My TN started in January 2006, and it started again in January of this year. It doesn't seem worse if I go outside in cold weather. Does yours get worse outside? Mine is also on my left side, and I don't seem to have any of the usual triggers (like touching your face in a certain place), but it really acts up when I move my mouth for things like talking, chewing, and swallowing. At its worst though, and before the meds were up to a reasonably high enough dosage, just sitting there was enough to cause really bad pain. Have you detected any things that make it worse for you? It might not be a trigger that you would read about in the TN information online, but there might be a pattern that is unique to you.

For the last week or so, the teeth on my lower left side have been hurting really badly (and it sometimes moves around from one tooth/teeth to another). I just went to the dentist, but he said everything was fine. One person on this site suggested Anbesol, which I have been using. It doesn't get rid of all of the pain, but it does help some. I've also switched to Sensodyne and a child-sized toothbrush (for a 2 year old) so that I can brush the rest of my teeth without touching the ones that hurt. I use mouthwash on the ones that hurt, and try to brush them carefully during times when the pain isn't so bad. I'm still working on the meds myself and my dosage isn't high enough yet to get rid of all the pain, so I still get frequent painful attacks every day. But at this point, I'm grateful that it's an improvement from 2 weeks ago. [My meds are now double what I was taking last year, and they worked completely last year, so I'm also worried about why they are not working this year. That's a question I'll be asking the doctors.]

I'm sure that someone else on the site has experienced what you are going through and will have some thoughts to share. I hope that your family learns to understand what you are going through and that you find some relief soon.

[Silver Swan]

Dear Lindat:

I am not convinced that moving to a warmer climate would help your pain very much. My facial sensations are worse when I sweat in the summer and they also are bad from cold air, warm or cold breezes, fans, air conditioning, opening the heated oven, etc. (I don't have the TN pains because of Balloon Compression surgery five years ago but do have unpleasant sensations on right side of face.)

That is my only comment. I just think that moving wouldn't completely solve the problem.

Shirley H.

[baywatcher]

Not to be down on your doctor, but I don't know how he would have an insight into whether your tn will stay - constant - or whether you can have remissions. Remissions aren't unheard of, and while they're brief sometimes (and much longer at others) it's nice to have a break. And the strength of the pain doesn't tell you anything about remissions either. So maybe it's just a tad negative of your doctor to not consider that.

You mention that cold is a trigger - as it is for many of us. Cold and wind are a pretty sure route to pain. So, scarves, hats, deep hoods and avoidance are the way to go whenever possible. Jean, who may pop in here with some suggestions, has a "turtle fur" gaiter and finds it useful. The nice thing about the gaiter is that you can pull it up over your cheeks when you need it and then let it snuggle around your neck when you don't. I found face masks gave me a lot of protection, but I hated the feel of them on my face. Also, I wear glasses and they did make my glasses frost up.

You didn't mention what your current dose of meds is. Most of us start fairly low and build up over time. There is a ceiling though, side-effects of the meds increase with dose. I finally had to move from tegretol to trileptal and like most who try it I find that it gives better pain control at lower doses, and has fewer serious side effects.

Clearly there are family issues around moving to a warmer place, but it could make a difference. Not too warm, though, in my experience. Heat and especially sweating can make my tn kick up. And while I live in Maine, I do garden a lot and it does get hot here in midsummer. So what, gardens trump tn anyday.

If you haven't read all the stuff up in the "stickies" thread, that's a great place to find more information. There's also a thread especially for newbies with some personal reports. And of course, the book "Striking Back", which is sold by the Trigeminal Neuralgia Association has a lot of helpful information. If you do read something that you think would help your doctor manage your case, you could try what many of us do: print stuff out and take it with you. Good doctors don't seem to mind, and you don't want a bad doctor anyhow.

What a wordy way to say welcome. If you have to be here, it's a great place to be. Everyone wants to help, and unlike the general public we understand a lot more of what it's like to deal with tn. Come on back and keep us posted. Nancy

[southerngirl]

Glad you found us there is a wealth of info here to read about your illness. I agree with the others that moving will properly not help your illness, cold is a main trigger for many of us but if it was the only one we could make our own city somewhere in the south named after the desease, TNCITY, it had a nice sound to it:p . You would be surprised at how high you get to on these meds, there are some people that that 3000 mgs on some of them, and still deal with the pain. First start a diary on how many times you have to go to the doctors and how many days you miss at work, if you have to file for SSI it will be helpful. I am on it stopped working over 6 yrs ago because of this illness, I have AFP, so surgery is out of the question for me therefore I cannot work at all. I was lucky and had a judge that understood that and ok's the SS disability. Start doing everything you can to cut back on the pain, etc wearing scarfs when you go out, covering your face is very important with this illness. I also have the kind that doesn't go away unless I can rest in a dark room with low light laying very still and hopefull fall asleep that can cut back on the attack. I was on oxicontin for a few years and it did help me also, so don't rule out taking a pain pill when you need it.
Well I hoped we helped you a bit, any questions don't hesitate to ask we have all been in the boat you are in and it can get very rocky. Stress can add to the pain so I know its hard but try and cut out any that you can. EX no volunteering for anything or anything else that you know if in your life that you can cut out, I know its hard but small things can help.
take care and keep us posted on how things go
Catherine

[IRead2]

Hi Lindat, I live in South Georgia, and cold/wind definitely gives me a problem. The winters are usually quite mild here, but as mentioned earlier, the summers are HOT! Higher temps mean lots of air conditioning. There are some stores that I dread entering in the summer because the AC blasts you as you walk in. I carry scarves or wear hoods in the summer also. It's always something, isn't it?
Pat

[Fizzbw]

hello!

So sorry you have had to join us - but very glad that you are here for the support and to join our wonderful community!!

I haven't had any remission periods other than 6 months after my 1st MVD - although I get better days than others which are always valued! I have triggers but also get non-triggered pain. Over doing it is very much a trigger for pain the next few days.

I use fentynyl successfully and am now keeping off the anticonvulsants - but if it affects you like that you want to avoid it don't you!!

Take care

Niki ***

[Lynnieme]

Hi, Lindat! I hope the coming few days will see improvement for you. I have Bilateral Atypical TN and now also diagnosis of AFP. Anbesol is useful tool but of limited relief period; I am now on Oxcarbazepine (daughter product of Tegretol) and find that side-effects are not quite as violent as with Tegretol but still require respect. I concur that air movement, temperature and humidity are all factors that have an aggravating effect on TN symptoms. Therefore, low pressure weather fronts with cold will exacerbate symptoms, but so will high pressure and increased humidity (such as precedes thunderstorms); the phenomena and effects on the human body are known but the mechanism remains unknown. Likewise, air-conditioning is an aggravator as are vibrations - from car travel to disco sound systems. Sian.

[ravenz68]

Lindat
Just read your post and feel for you. I have only been diagnosed for past week and 1/2 but have been digging for all the information that I can. The Neuro has me on 800 mg of Tegretol and Percocet in between. I feel like the walking dead. But the pain is just starting to get under control. I have to make myself get used to it. Mine is also on the left side. It's been a whole two days since I cried in pain! Luckily, I have an understanding boss who says not to worry about it and to take care of myself first. What struck my interest in your post is the so called "floating tooth" I just had the conversation with my mother tonight that the back bottom tooth feels "higher" and that my bite is off. When I am not in pain, I can get it to go back down, but it floats up again. I certainly don't want to go to the dentist to have him putz with it. I too am interested if anyone else has this "phenomenon" Hopefully things will get better for you soon :)

[Lindat]

Oh my God, you have the same wierd tooth thing that I do! I have wondered if having the tooth pulled will help any, but I'm scared to death that it will make it worse...I'm still trying to find a doctor that I connect with...the one I have now is ok, but very..distant...anyone know of a good one in the Rockford, janesville, madison area ( northern illinois, southern wisconsin area)? I also can't find any support groups around here either, it would be nice to able to fall apart with some folks who understand this. I'm tired of being "strong".

[IRead2]

I have AFP, and periodically, I also have a floating tooth (or teeth). "Floating" is a great description of this problem. I think this phenomenon is rather common, and I believe this feeling is the result of swollen gums. (I could be totally wrong.) When you get your pain under control, the tooth will probably feel normal again. But, don't be surprised to find that another tooth is floating.
Pat

[facepain]

I had my tooth pulled -- It was NOT the tooth -- now I am left with a missing front tooth and TMJ from my bite being off. Just wanted you "tooth" questioning gals ;) to know that -- there is a way for your dentist to check if the tooth is the problem. I wish you peace and painlessness!

[abby61400]

I've gotten the pain under control with a lot of Tegretol, and all of my teeth have stopped hurting (a few twinges here and there where my wisdom teeth would be) and my bite is completely back to normal. So stick it out if you can while you wait for the right meds to work!