Dorsey Salerno said:
What is your 175 anti-depression? I find that stress triggers the TN. Maybe that might help me. Dorsey
VAgirl said:
Hello Dorsey: I take 120 mg/day of Cymbalta which functions both as an anti-depressant and to treat the TN nerve pain. You have to titrate up starting with 30 mg/day. I've had good results with minimum side effects. As you mentioned in another post, all of these meds make me constantly thirsty - this side effect will improve a little over time, but it never completely goes away. I carry a container of COLD water with me always. Also, as you mention - for me stress plays a big factor in triggering TN and causing pain breakthroughs. This seems to result from prolonged increases in blood pressure - those arteries/veins pounding harder against the trigeminal nerve. This seems to be true for many people. Something else that might help: sublingual B vitamin products. Also, I keep planning to try yoga or some other relaxation techniques, but life is too hectic to squeeze those in!
Dorsey Salerno said:What is your 175 anti-depression? I find that stress triggers the TN. Maybe that might help me. Dorsey
For me, the side effects were extreme zombieism! I couldn't think, could barely move, was totally and unnaturally exhausted. So yes, would have probably gained weight as a side effect of the side effects! but I came off it after a very short time.
I have been in mild remission for well over a year. It did go away complety but now I still get moderate twinge pain when I touch my top lip which is why I now have a moustache. I am taking NO medication but I was taking about 600g Tegretol per day and was considering an operation. The specialist sent me for an MRI scan but it didn't show much because I refused the dye as I have one kidney and that's not 100%. The funny thing is after the MRI the pain seemed a little better so I started taking smaller dosages and it didn't get any worse. Maybe, I thought, the magnetism in the MRI helped so I bought a magnetic pad which I inserted in the pillow slip. I slowly reduced to half a tablet and then none. Of course I have pain but it's bearable. In fact I just took a drink, connected with my lip and received the normal electric shock which shakes me for a while but am determined to keep off the Tegretol until I have to. I still use the magnetic pad so why don't you try it. You got nothing to lose.
geoffrey boxer said:
I have been in mild remission for well over a year. It did go away complety but now I still get moderate twinge pain when I touch my top lip which is why I now have a moustache. I am taking NO medication but I was taking about 600g Tegretol per day and was considering an operation. The specialist sent me for an MRI scan but it didn't show much because I refused the dye as I have one kidney and that's not 100%. The funny thing is after the MRI the pain seemed a little better so I started taking smaller dosages and it didn't get any worse. Maybe, I thought, the magnetism in the MRI helped so I bought a magnetic pad which I inserted in the pillow slip. I slowly reduced to half a tablet and then none. Of course I have pain but it's bearable. In fact I just took a drink, connected with my lip and received the normal electric shock which shakes me for a while but am determined to keep off the Tegretol until I have to. I still use the magnetic pad so why don't you try it. You got nothing to lose.
geoffrey boxer said:
geoffrey boxer said:I have been in mild remission for well over a year. It did go away complety but now I still get moderate twinge pain when I touch my top lip which is why I now have a moustache. I am taking NO medication but I was taking about 600g Tegretol per day and was considering an operation. The specialist sent me for an MRI scan but it didn't show much because I refused the dye as I have one kidney and that's not 100%. The funny thing is after the MRI the pain seemed a little better so I started taking smaller dosages and it didn't get any worse. Maybe, I thought, the magnetism in the MRI helped so I bought a magnetic pad which I inserted in the pillow slip. I slowly reduced to half a tablet and then none. Of course I have pain but it's bearable. In fact I just took a drink, connected with my lip and received the normal electric shock which shakes me for a while but am determined to keep off the Tegretol until I have to. I still use the magnetic pad so why don't you try it. You got nothing to lose.
From Dorsey: Magnetic pad sounds interesting. Where do you buy that? Then to VAgirl: I am also taking Cymbalta, only 30 mg. and will ask about taking more.
My Physical Therapist mentioned that many find some relief from massaging the cheek. I certainly know that sugar is bad news for TN, and cold water, both with drinking and brushing teeth. Not news to any of you, I'm sure. Dorsey
Yes, I found also while on a tegretol and gabapentin mix that I gained weight, so much so that between knowing what the medications were doing, as well as experiencing so much pain while trying to eat, that I developed an eating disorder and became skeletal.If you are knowledgeable as to what to expect when taking a medication it is key to dealing with the side effects. As per Lyrica, I had one of the rare reactions to the medication whereas I appeared severely drunk all of the time and could not hold any balance. I was told this reaction occurs in about 4% of the population and was weaned off. I feel the main thing is finding anything that stops the excruciating pain for you in a manageable way, and working with that medication, weighing the benefits and detriments. I dont think anyone should be given only one option when we are dealing with a disorder that medical treatment seems more individually succesful depending on the person.
Hmmmm. What's a magnetic pad and where do you get one? Might help me to sleep, I get startled awake quite a bit and it feels like an electric shock. It's pretty awful!
geoffrey boxer said:
I have been in mild remission for well over a year. It did go away complety but now I still get moderate twinge pain when I touch my top lip which is why I now have a moustache. I am taking NO medication but I was taking about 600g Tegretol per day and was considering an operation. The specialist sent me for an MRI scan but it didn't show much because I refused the dye as I have one kidney and that's not 100%. The funny thing is after the MRI the pain seemed a little better so I started taking smaller dosages and it didn't get any worse. Maybe, I thought, the magnetism in the MRI helped so I bought a magnetic pad which I inserted in the pillow slip. I slowly reduced to half a tablet and then none. Of course I have pain but it's bearable. In fact I just took a drink, connected with my lip and received the normal electric shock which shakes me for a while but am determined to keep off the Tegretol until I have to. I still use the magnetic pad so why don't you try it. You got nothing to lose.
(1) Sleepiness sure. (2) Numb lips is next, then (3) double vision (mine is one image over the other, very miserable) makes you have to watch TV with one eye closed. After that, (4) the inability to walk from place to place without falling down, is really a pain in the neck, but the worst, is the (5) inability to move your hands and legs at all the way they're supposed to. They sort of flop around and wont move in the direction you move them. It makes going to the bathroom impossible without help. You would think that the (6) inability to form words would be bad, but it's really not that bad, because you are exactly the way you always are, in your head, but you just can't get much of anything to come out right. It just sounds like "bla, bla, bla" instead of words. It scares the hell out of my wife when this happens to me, and I feel like crap when I hear her being mad at me for overdosing, but it has happened.
The basic trouble with TN is that it gets worse over time, and Tegretol works less. I've had TN for 46 years now because I was 9 when It first hit me. My doctor father, who had TN patients, took me to the dentist at first, knowing there was no way I could have TN (I was the youngest person with it. Sadly, that's not the case anymore, as younger people than me have TN). I had the best of doctors, of course, having a father that was a doctor. One Neurologist after another verified it. My MVD surgeon was Dr. Rhoton, when I was in my 20's - the best at the time. I've seen pictures of the pinky sized vein that presses up against the nerve - it's massive. I've never been able, since, to gather the strength to face another surgical remedy, but I've tried nearly every medicinal option - trying every medicine known to have had some positive effect. After years of experimentation, and years of getting on, and then off of various narcotic attempts to find a solution, I've settled on good old Tegretol, as the only one that's had the best "real" positive effects.
But, if you take this drug for as long as I have, you'll find it takes more and more. My last Tegretol level was over 13, and I considered myself in fairly good condition when that test was taken - no numb lips, or other bad effects, and only a dozen or so taps per hour pain. It's tough to talk about tegretol in relation to milligrams because it is metabolized differently in each person. I'm 6',0" and 217 lbs, and I'm sure metabolize the medicine differently than I did as a teenager, or a reader of this blog. But to put the numbers in perspective, I used to take six 200mg tabs, twice daily while I was still working. I've stopped working, and now only take 2,000 mg/day. That's a high dosage, I know. But it's the only med I take. I take 5 tablets when I get up, and 5 twelve hours later.
For me, this is the limit of the drug. Taking more causes overdose, and the above side effects. If I don't have a bowel movement, drink anything alcoholic (which I avoid like the plague), or don't eat enough I find it effects the blood level of the drug, and my first sign of that is numb lips. Numb lips are a big warning to me to eat something, go to the bathroom, and lay down and try to sleep it off.
I suppose, at some point in time, I'll have used Tegretol longer than any other person. I started taking it about 40 years ago. My liver function tests are fine, so far. I don't put my liver under any additional stress by drinking. I don't know what else I could do to make sure it stays that way. If I live as long as everyone in my family (85), I will have taken Tegretol for 70+ years. Maybe they'll do a study on me.
Hats off to you, Chief Beachbum, for being able to carry on carrying on for so long through this tortuous journey. I must say that I agree that Tegretol was and is the one drug that allowed me to carry on too. Yes, it has some pretty awful side effects, especially if you've had to ramp up your dosage, but it's more or less reliable in terms of helping you manage the pain (despite sometimes breakthrough pains). I think the thing to aim for is to take as little of it as you can get away with, and if you have to ramp up the dosage, to try to do it in small increments slowly over time. I am pretty sure I did that too fast many times in the past when totally desperate with pain, as it accelerated the bumping into furniture, falling over, eyesight badly affected and so on. Whenever on a very high dosage, I would periodically start reducing the dose to see if the pain had subsided enough to support a lower dose, thereby trying to restrict the ultra high dosage to a limited time frame. Thank you for an interesting post Chief, and all the best to you.
Shinglesdidit, where are you getting the P-stim for your GN? I see you are still taking meds to help control it. How helpful has the P-stim been for you? Sharon
Geoffrey, where can you find a magnetic pad? I think this is very interesting. I want to try PNS, nerve stimulator but can't find anyone that does it in SW Florida. I believe the cranial nerves are getting the wrong message, that is why they fire..I also have had almost 20 years of remission from ATN. I am hoping for remission but think there must be something more than meds and surgery to get remission. Somehow those nerves started misfiring so there has to be a way to stop them. I have basically negative MRI's but was told you can not always see TN and I also have atypical GN on MRI. I have had TMJ surgery when I was 29, then I got the face pain for about 5 years. An ENT told me the TMJ joint is only 1 mm away from the 5th cranial nerve. I don't have insurance coverage for a specialist in TMJ locally. I am not very interested in anything invasive as I was told by a top specialist, a neurosurgeon, from this site not to do anything. He told me very directly he would not go in to look for compression as I am atypical and most ATN sufferers get worse from invasive surgery or other invasive procedures. My neuro was recommending RF. I can google this too about the magnetic pad. Sharon
I'd MVD done in 2006. Tegretal and Gabapentin were tapered off in a week.Seven years on, I'm still off all that medication. Take B12 and other supplements, practice certain yoga postures to keep my mind balanced and whenever there is a need, take homoeopathy, which has least side effects. May be I should do a book for the benefit of fellow patients how I kept a relapse at bay. I can briefly describe here later if it's of help to you. R C Murthy
Thank you everyone with your replies. Im a Soldier currently deployed at Al Udeid Air Base and my TN has come back. The last time I had symptoms was over a year ago. My mom passed in August and by the end of August I could feel it creeping back. I have been on Teg and Baclofen until the end of September when that combination stop working. I switched to Teg and Gab and it has worked pretty well but my work plan maybe too much for it. I was 230 when I arrived here an my current weight is 210 now. Im trying to push my work out levels up more but I find that I have attacks that put m down for days. I need another combination that might work for someone who is active. Please if anyone can help me.
Granny, I'm getting the implants done in Detroit MI, that's where my neurosurgeon is.*Michigan Brain and Spine Surgery Center. After 3 of them I can honestly say that I can tell a difference. When the meds wear off I still have pain but it's slower to take me over. I take oxycontin for pain and lorcet for breakthrough pain. I have had NO breakthrough pain since the last implant. I'm cautiously excited. I go for # 4 on the 12th. Let me know if I can be of any more help Sharon!
Always~Laurel
Granny said:
Shinglesdidit, where are you getting the P-stim for your GN? I see you are still taking meds to help control it. How helpful has the P-stim been for you? Sharon
I am currently on tegretol but only 300 mg daily. I have noticed that it makes me tired when I take it at night along with the lyrica that I am on. Lyrica was added just recently because after 7 months of no pain, my face pain came back in full force. Tiredness is the major side effect that I experience but I have also noticed that I have lost weight and that my appetite has diminished. I have to consciously remind myself to eat 3 meals a day. Side effects are different for everyone and I hope that you can get your dosage under control.
Hi, when I tried Tegretol a couple of years ago, it did not suit me at all so my doc tried Trileptal (Oxcarbazepine) which is a molecule more or less than Tegretol but works the same without so many side effects...My ATN has been controlled for about 2 years with Trileptal(600mgs.daily) and Baclophen(20mgs daily), The side effects seemed to be minimal although I have trouble with concentration...this October my face started tingling again and gums sarted to hurt so the doc upped the Trileptal 150mgs. it seems now that my eyes get foggy off and on and a little more of my concentration, decision making skills and getting to do things skills seem to be affected. It is subtle yet disconcerting because I have difficulties deciding and making dinner etc. I sarted writing this response thinking iy would be a suggestion to get your doc to change to Trileptal instead of Tegretol but after writing it I realize that that it probably would not be much better...sorry...oh yeah, I haven`t put on any weight...so that might be better.( ps Topomax really affected my cognitive faculties, after a while I had to get off it, on another site someone reffered to it as Dopomax and Stupomax lollllll)
For me it meant falling down concerete steps and busting up my face from the dizzyness.
Hi Sharon,
I think you can get magnetic pads from any shop that deals in magnetic health products; anything from earings to magnetic blankets. I'm in Queensland but try the internet. There's also a company based in Israel that sells a pad that's supposed to alleviate TN pain. I didn't try it but again try the internet. I also take Vit B12 which, I'm sure, you do to.
Cheers,
Geoff
Granny said:
Geoffrey, where can you find a magnetic pad? I think this is very interesting. I want to try PNS, nerve stimulator but can't find anyone that does it in SW Florida. I believe the cranial nerves are getting the wrong message, that is why they fire..I also have had almost 20 years of remission from ATN. I am hoping for remission but think there must be something more than meds and surgery to get remission. Somehow those nerves started misfiring so there has to be a way to stop them. I have basically negative MRI's but was told you can not always see TN and I also have atypical GN on MRI. I have had TMJ surgery when I was 29, then I got the face pain for about 5 years. An ENT told me the TMJ joint is only 1 mm away from the 5th cranial nerve. I don't have insurance coverage for a specialist in TMJ locally. I am not very interested in anything invasive as I was told by a top specialist, a neurosurgeon, from this site not to do anything. He told me very directly he would not go in to look for compression as I am atypical and most ATN sufferers get worse from invasive surgery or other invasive procedures. My neuro was recommending RF. I can google this too about the magnetic pad. Sharon
I am on 300 mg per day and I get drowsy around 2-3 pm. I take 100 mg in the morning at breakfast and 200 mg with dinner at night, I get a great sleep. I still get a bit of fluttering or spasms in the cheek and gum but it is nothing for me to worry about. I have been on Tegretol now for 3 years now and I haven't put any weight on with it, so it may affect different people different ways..