Hi Mikey, I had the gamma knife & they said it's not a surgery. It's just shooting radiation to a very small point. They call it the non-invasive treatment, at least that's how they referred it to me. It stopped my shocking pains, but I know it's possible that will come back. They couldn't treat me for the other TN's I have unfortunately. And I couldn't take the meds. I wish you the best as you seek relief.
mikey said:
what type of surgery did you have? I had gamma knife surgery at Barrow Neurological in Phoenix about 1 1/2 years ago and the pain is gradually returning...I have scheduled a visit with a neuro here in Coeur d'alene and will make my way back to Phoenix for possibly a more invasive procedure.
I suffer from tn and right now, …am in a much less severe pain which has baffled me! My first experience in 1999 was after a dental procedure and a dental pain specialist sold me a mouth piece for Tmj , used for a year with no relief but I had Tylenol with 30mg codeine and Valium to take only if absolutely needed however then dysthetic vulvadynia hit and other nerve acute pains so I gladly went to a pain specialist and was put on neurontin 400mg 4 times a day and amitriptylline 50mg at bedtime and thankfully lidoderm patches…also vicodin 7.5mg was used only for severe episodes…the advent of neuropathy pains…were stabbing relentless for a month then would ease with pain meds but in 2005 I stopped neurontin and took lyrica 150mg twice a day…and lyrica replaced the neurontin I had been faithful to!
The lyrica I soon found, had to be taken regularly or else I had terrible withdrawals …no missing even 1 !..we lived overseas by then and as it and amitriptylline were the only meds I took on a regular basis…(I had tried antidepressants but felt awful in other ways so went off of them slowly)…up until 2007, the tn pain would flare but was moving from right side to left side of face at will…
I just lived with the meds at hand til I noticed severe bouts of depression and in 2012, upon having thyroiditis, tried to get myself off the lyrica…and…at that time, I was over 60 and my new primary care in USA wanted me off all the amitriptylline…I went off the amitriptylline over 4 weeks and after I read about side effects of lyrica, decreased slowly over 2 weeks to zero but, then all heck broke loose…
A year previously I had had cataract surgery left eye and with going off the meds, I really royally messed up because I had a terrible terrible debilitating tn,eye and upper molar rt side pain which my dentist. checked and was about to do a root canal …but I said no!..turned out my upper rt. molar was fine…was nerve pain…that was last October 2013,and my pain specialist ordered me back on lyrica and upped my pain meds to time release opiates…upped them over 2 months to twice the dose I had been …the pain was that bad…I had not mentioned the depression from the lyrica as I should have but I had had no tn pain on a regular basis that had been as bad as when I stopped the Amit. And the lyrica…sooooo I was a wreck…I went to hospital in even more neuropathy pain in other parts of body, I had kept a good pain diary with everything I put in my mouth…long story short…I saw a neurologist in April 2013 and she told me about the laser knife that would alleviate pressure on 5th cranial and put me on lamotrigine 50mg…I was tapering the lyrica and also back on immediate release opiates tapering slowly and pudendal nerve pain made it impossible to sit…I was a mess…
The lamotrigine made me feel like a zombie and after only 3 days…and doctor knowing,…I tapered off that…
I decided against the surgery…MRI scan of brain showed nothing…so I continued to taper very slowly off the lyrica and opiates…too weak to do anything, and still with outbreaks of the tn and eye pain…I just don’t know how …but it is nov2014 now and I only use the lidoderm patches and one vicodin 5mg every 3 rd day or so for other neuropathy type pain and the facet joint arthritis in my back…I have had my nerves cut in my back over 5 yrs and after going off every med my body has been thru the fire and I still have pain spurts but I am more concerned with the autonomic neuropathy ( sweats,weakness,gastro ibs,diverticulitis and my back pain.)
remission? Yes…but the meds were actually causing hyperalgesia…my flesh was on fire, my striking pain both left and right side of my face and eye was horrific so I do not know what is going on…I have autoimmune thyroid disease and an autoimmune kidney problem both under control now…I have a terrible neurological problem that unfortunately went haywire but I will try the topical meds if the tn acts up again…I think!..but I am so Leary now!.I feel for you all so very much! Even though I was given the opiates the pain soared on for me…at my age…over 60…my doctor says no amitriptylline and I feel I probably need to try cymbalta again but I am petrified to try anything…I take 1/3 the dose of anticholinergic drugs glycopyrrolate and dicyclomine for sweating and irritable bowel only if I am so miserable…a PET scan showed no cancer thank goodness! …take care and don’t give up on what works but realize that these are serious meds that have to be taken regularly…and sometimes one med makes one take another med have to alleviate the effects of others…have a good relationship with your pain specialist,neurologist and GP…Even though my pain specialist is a neurologist, I still sought another tn neurologist’s opinion…this’s forum is invaluable…and keep a good diary…that saved me because I was able to prove my pain got so much worse then improved and why! I realize my only problem is not TN but that is my story…I had to TRY a medication decrease! I never had allergies before and now I seem to have much worse sinus rhinitis so maybe it is all connected too! Blessings…
Wendyjo, I know we can all appreciate your pain. I know it is hard to tell if you're actually in remission or if the medications and/or treatment is working. For me, I say it if it isn't broken, don't fix it. If you are pain-free for a period of time that allows you to have normalcy with your day-to-day routine just enjoy it. To truly be in remission you would need to be off all medications and pain-free. Coming off of many of the medications after long-term use can be equally as distressing. You can always decrease your medication slowly and see if your condition changes. I know that if I make any changes to my Lryica or Nortriptyline I am in serve pain within a few days. There is always medication built up in our system so even that is hard to tell. I realize I have just done nothing to answer your question. First you have to define what remission is to you and take it from there.I have been in distress for almost two years with no remission in site.
Hi Wendyjo,
The circularity of TN: I can’t stand the pain, I can’t stand the meds: it’s just awful and I’m so sorry you are going through this. I don’t know how long you’ve been on the meds but what I have to add to this discussion is that my brain adjusted somewhat to high doses of gabapentin (3600 mg/day) and I came out of the med stupor…although I still feel cognitively impaired compared with before. But still, it’s much better than the early days when I simply felt like my whole head was being carbonated.
Keep Heart, you’re not alone.
Bellalarke
Ah, WendyJo, don't apologise for asking questions... or for feeling frustrated. this is exactly the right place to come. It's a hideous disease we've got and there are no easy answers. Yup, the pain meds make you feel like crap, yup, the pain breaks through. If it's any help, I have reduced my meds and although the pain is just as bad if not worse sometimes, I've found that the positives far outweigh the negatives. I don't feel braindead anymore. I don't feel tired in between pain attacks any more. I can function like a normal person again, make decisions, have coffee with my daughter, take my dog for a walk. I couldn't do a thing on the meds. Wendyjo, have you tried a pain management clinic? Is that an option you can explore? Thinking of you with warmest thoughts.
P.S Tegretol is quite disabling, so ask your neuro to replace this if possible and depending how long you've been on it ask for liver function tests
Hi Wendyjo, please don't feel that you have to apologise for asking questions, it is for that reason why this forum exists. Have you tried Oxycarbazepine, as this was the best med I took and had far fewer side affects that all the others I tried. You need to find the right med but my advice is to stay on them a while as they do generally take time to get into your system and work (my Dr had me on each med for 6 weeks before I switched). Having said that I underwent MVD in April'13 and although it wasn't as plain sailing as one would have hoped (I had a brain fluid leak following surgery) I am now fully recovered and pain free, so if you are looking for a long term solution, I would seriously consider MVD surgery.
I suffer from tn and right now, ..am in a much less severe pain which has baffled me! My first experience in 1999 was after a dental procedure and a dental pain specialist sold me a mouth piece for Tmj , used for a year with no relief but I had Tylenol with 30mg codeine and Valium to take only if absolutely needed however then dysthetic vulvadynia hit and other nerve acute pains so I gladly went to a pain specialist and was put on neurontin 400mg 4 times a day and amitriptylline 50mg at bedtime and thankfully lidoderm patches...also vicodin 7.5mg was used only for severe episodes..the advent of neuropathy pains..were stabbing relentless for a month then would ease with pain meds but in 2005 I stopped neurontin and took lyrica 150mg twice a day..and lyrica replaced the neurontin I had been faithful to! The lyrica I soon found, had to be taken regularly or else I had terrible withdrawals ..no missing even 1 !..we lived overseas by then and as it and amitriptylline were the only meds I took on a regular basis..(I had tried antidepressants but felt awful in other ways so went off of them slowly)...up until 2007, the tn pain would flare but was moving from right side to left side of face at will.. I just lived with the meds at hand til I noticed severe bouts of depression and in 2012, upon having thyroiditis, tried to get myself off the lyrica..and..at that time, I was over 60 and my new primary care in USA wanted me off all the amitriptylline..I went off the amitriptylline over 4 weeks and after I read about side effects of lyrica, decreased slowly over 2 weeks to zero but, then all heck broke loose.. A year previously I had had cataract surgery left eye and with going off the meds, I really royally messed up because I had a terrible terrible debilitating tn,eye and upper molar rt side pain which my dentist. checked and was about to do a root canal ..but I said no!..turned out my upper rt. molar was fine..was nerve pain...that was last October 2013,,and my pain specialist ordered me back on lyrica and upped my pain meds to time release opiates..upped them over 2 months to twice the dose I had been ...the pain was that bad...I had not mentioned the depression from the lyrica as I should have but I had had no tn pain on a regular basis that had been as bad as when I stopped the Amit. And the lyrica..sooooo I was a wreck..I went to hospital in even more neuropathy pain in other parts of body, I had kept a good pain diary with everything I put in my mouth....long story short..I saw a neurologist in April 2013 and she told me about the laser knife that would alleviate pressure on 5th cranial and put me on lamotrigine 50mg..I was tapering the lyrica and also back on immediate release opiates tapering slowly and pudendal nerve pain made it impossible to sit..I was a mess.. The lamotrigine made me feel like a zombie and after only 3 days..and doctor knowing,..I tapered off that.. I decided against the surgery..MRI scan of brain showed nothing..so I continued to taper very slowly off the lyrica and opiates..too weak to do anything, and still with outbreaks of the tn and eye pain..I just don't know how ..but it is nov2014 now and I only use the lidoderm patches and one vicodin 5mg every 3 rd day or so for other neuropathy type pain and the facet joint arthritis in my back..I have had my nerves cut in my back over 5 yrs and after going off every med my body has been thru the fire and I still have pain spurts but I am more concerned with the autonomic neuropathy ( sweats,weakness,gastro ibs,diverticulitis and my back pain.) remission? Yes..but the meds were actually causing hyperalgesia...my flesh was on fire, my striking pain both left and right side of my face and eye was horrific so I do not know what is going on..I have autoimmune thyroid disease and an autoimmune kidney problem both under control now..I have a terrible neurological problem that unfortunately went haywire but I will try the topical meds if the tn acts up again...I think!...but I am so Leary now!.I feel for you all so very much! Even though I was given the opiates the pain soared on for me..at my age..over 60..my doctor says no amitriptylline and I feel I probably need to try cymbalta again but I am petrified to try anything..I take 1/3 the dose of anticholinergic drugs glycopyrrolate and dicyclomine for sweating and irritable bowel only if I am so miserable...a PET scan showed no cancer thank goodness! ..take care and don't give up on what works but realize that these are serious meds that have to be taken regularly..and sometimes one med makes one take another med have to alleviate the effects of others...have a good relationship with your pain specialist,neurologist and GP..Even though my pain specialist is a neurologist, I still sought another tn neurologist's opinion..this's forum is invaluable..and keep a good diary..that saved me because I was able to prove my pain got so much worse then improved and why! I realize my only problem is not TN but that is my story....I had to TRY a medication decrease! I never had allergies before and now I seem to have much worse sinus rhinitis so maybe it is all connected too! Blessings......
I understand too. In 4 years I've had 11 minutes of remission. It was so obvious when it stopped, it was like the light going out. Meds only dulled me, but not the pain. So I'm headed to Duke for MVD. When I went for the consult the doc said "Why haven't you just gotten the cure?" It seems so simple to them.And they do have a great success rate. They told me that at my age (61) I may not be a candidate in years to come and this will not go away and meds will only work short term. I hope you can find some relief. I have found at times I can hold something really hot to the back of my ear, where the nerve is, and it dulls the pain down some. Maybe it's a placebo, I don't know, but at least it gives me something to do and a little bit of hope. It started with a cup of McDonald's coffee, the paper cup was really hot, but not so hot it would burn me. I probably just shook the nerve up a little bit. I've done this in the car quite a bit on long trips and I often laugh at what people passing by or stop lights must think :) Heck just because I'm in pain doesn't mean I can't have a sense of humor!
I had an MRI before the MVD and it didn't show a thing, This didn't surprise my surgeon. He said that was very common. He did the surgery and I have been pain free for over 5 years. He said the main artery had grown into the trigeminal nerve like a fence into a tree trunk. It took him 4 hours to separate the two. I have read thousands of posts over the years. On the posts that I have read possibly over 100 people that have gotten relief from TN through an MVD didn't have anything show up on an MRI. I have read many times that the surgeon wouldn't do the MVD because nothing didn't show up on the MRI. I have told those people to find a more experienced surgeon. I had TN for over 12 years. Saw a lot of doctors. Only one gave me good advice. The surgeon that did the surgery. The neurologists, the MD'S, the pain specialists were all ignorant. I wasted thousands on alternative treatments from chiropractic to acupuncture and a few others that did nothing but make me broke and still in pain.
I recognise much of what you mention here. Plaese read my reply a few messages before.
► I take 3 to four times: 1 lormetazepam 2mg to fall asleep with pain + 1 lyrica (=Pregabaline) 150 mg + 1 Tramadol retard 200 mg. + the Israëli Painshield after my first wake-up. It helps to reduce the pain.
I truly feel for your predicament and have much empathy for you. I have gone around and around with TN for nearly 20 years. Personally, I feel that an MVD is your best option. I tried a Gamma Knife, which helped for a while but I never could get down very much with my medication. I have had two MVD's, one on each side of the face. I can certainly feel your frustration and hope that you will be able to cope with the pain and frustration and have a happy outcome in the future
I truly empathize with you Wendyjo. I just came back from the e.r. because the pain was so bad. I have been suffering for the past 3 yrs. Currenty on 2700mg. Neurontin and 1200 mg of tegretol. Still barely making me able to function. At the e.r. they gave me a 2 week regimen of high dose corticosteroids and am hoping this does something. Hoping in January to see the neurologist. Hang in there. We are all in this together
Hi Christine, was interested in your reply to wendyjo, I have been to the ER too, I have found them hopeless, no one knows anything about TN… In one hospital emergency dept, after my husband told them what I had (one of those times when I was unable to speak because of the pain in my jaw) they told him maybe I would be more comfortable at home, they couldn’t wait to get me out of there… And not many GPs know about TN either, coping with this is a very lonely place. The only person who has any idea is a neurologist, and all my contacts here of course. I hope you are considering a MVD. It’s the only way to go. Hope today is going to be a pain free day? Anne
Never be sorry for asking a question. Unfortunately this condition treats each of us in different ways. I have never had remission, except for 3 years relief from MVD surgery. I am on 200mg Tegretol and 200mg of Lyrica three times a day to manage the pain. Up until now I was able to work full time, however I am cutting my hours down, just because I get so tired with the medications and am afraid to drive at night. Sometimes, even at work I will get breakthrough pain. I have learned to manage this with breathing techniques that they taught me in Lamaze years ago. I can't tell you it will get better, you just get better at handling this condition over the years I think.
Some medications are better than others in regards to feeling so awful, ask your doctor if perhaps he/she can mix it up or try something else. Sometimes that helps. Good luck and don't stop asking questions or venting that is what we are all here for.
Don...I had the GK surgery and 6 months out it didn't work...now I am doing the implants...each time the affects seem to be different but I have had a small reduction of pain so I'm sticking with it....otherwise it's MVD for my geniculate neuralgia. I always back off on my meds too, just testing to see if the meds are reducing the pain or if the pain is actually changing in some way ie getting less. So far I only get it proven to me that the pain is still there but I've gotta keep on testing the waters...know what I mean Don said:
I always backed off the meds as soon as the pain allowed it.My Tn would totally disappear between episodes,but came back worse each time.I don't think it was going to leave this last time though.It would ease up and then slam me terribly.I decided to have Gamma Knife done and am pain free now the past 3 months or so.If it returns i will try the stimulator implant.Yea,the meds suck! Hang in there.
Sorry to hear you’re in so much pain. I understand your frustration about meds versus pain. It’s so difficult at times. I often think I will try to put up with the pain so as not to be so spaced out on drugs but I eventually always give in. I just can’t stand the pain. I guess we all have a different threshold for pain? I read a lot on here about mvd. I’ve never had one but I do have a good gp that I trust who has had other patients with tn in the past.
Anne Morris: It sounds like your husband is supportive of you and understands and I’m so happy for you for that. Every small thing in our lives makes it better. Even if it’s just someone who will speak for you for a while.
You are on a very low dose of tegretol and fairly high of neurontin. You might want to increase the tegretol (I take 400 twice a day) and decrease the neurontin - neurontin always made me feel like a drunk). Both drugs need to build up in your system so give it a couple of weeks; also if you are stopping your meds Iike the neurontin; you need to do it slowly. Please note that this is just my opinion, I am not a doctor and others may disagree so take it with a grain of salt. Wishing you relief!
I'm sorry you are feeling so poorly Wendyjo. Do you think it might be time to pursue MVD or one of the other surgical options? Have you seen a good neurologist or neurosurgeon? I understand your frustration. I'm currently in week 6 of continual pain and my meds are barely taking the edge off. I'm uninsured until Jan 1 when I plan to start seeing a new neurologist and hopefully find treatment that works for me. Hang in there and don't give up on finding what works best for you.
Wendy, I feel for you. I had the pain even worse than you! I had it daily for nearly 6 months, often several times a day, even in the middle of the night, so I'd wake up and not be able to fall back asleep again because I'd just lie there worrying about another attack. I took Tegretol and had a terrible reaction to it. Then I was up to 2700 mg of Neurontin a day. All it did for me was make me non-functionally tired. I might as well have been taking a placebo. Then my neurologist put me on lamotragine -- quite a small dose actually, and I feel zero side effects. It was like a miracle. No more pain after that at all. Just a few tingles like the pain might come, but it never did. It's now been 1 1/2 years. The neurologist said he could try to wean me off of the medication, but I'm too afraid of the pain coming back. He also said that there's no harm in my staying on it for the rest of my life, which is what I plan to do. So I suggest you keep trying different medications. Hopefully one of them will work for you! Diana
WendyJo, so sorry to hear of the pain you're experiencing. I went through a severe bout of TN pain over two years ago, and was prepared to schedule and MVD, since I didn't want to go the drug route due to the side effects. My sister gave me the book "What Time Tuesday" Decided to try upper cervical chiropractic. My experience was within 5 days I was 95% pain free, and within three weeks it was gone completely. I was 100% pain free for about a year until a mission trip to Haiti riding on unbelievably rough off-road 4x4's getting back into a remote village knocked my neck out. Pain came back, but after a couple visits to my upper cervical chiropractor, 100% gone again. It worked for me so well, and is so simple and inexpensive compared to other options. I just encourage everyone to at least try it. In any case, best of wishes on your recovery. Hang in there...