For the people who have been in remission is it completely pain free for the time? I have only had this curse since end of September but not been pain free for one day during that time. However I havent had an episode that has left me in tears and shaking since 3rd Jan, during december I had 2 weeks of daily pain episodes that left me in bed for 2 weeks unable to eat and just crying for most of the time. I have returned to work 4 weeks ago and sort of believed (and toldmy boss) i was in remission, still experiencing upto 30+ flashes of pain each day, these vary from mild discomfort to making me cry out aloud in pain, this does result in me getting some funny looks, especially on the bus to work in the mornings, anyway i dont think (or i hope it isnt!)really remission. Can i really hope to wake up one day and have no pain at all?
Hi. I have been told there can be remission but because of my bodys inability to deal with the drugs I had the operation which has had me pain and medication free for one year and 2 days. But I know it can still come back and I live in fear of that. Hope all goes well for you . jen
I am getting into depression, cannot have this change my life forever …cannot live in constant fear …my husband really helps …but still noone understands the depression which is building inside me …my dreams are very scary …please friends help me live a normal life
Dear Borris:
I hope you have good insurance and access to good medical care and a good family / friend support structure to help you cope with your TN. My 2 “remissions” have NOT been completely pain free without any medication. However, the first remission was only completely pain free with no pain breakthrough for several years on a very limited amount of meds (30 mg/day Cymbalta and 50 mg/Topamax.
I am in a 2nd “somewhat remission” but under very unusual circumstances. Was having to take max meds (60 mg/day Cymbalta, 400 mg/day Topamax, 100 mg/day Lamictal XR) and completely eliminate all CNS stimulants such as caffeine (colas, teas, etc) from my diet. After a few nights where I forgot to set the alarm for my 2am dose of Topamax, I discovered I could eliminate it with no ill effects. Then experimented with omitting the 2pm dose of Topamax, also with no ill effects.
A Dec 2013 very dismal and shocking diagnosis of Pancreatic Cancer with metastasis to liver inspired me to try to reduce my daily dose of Cymbalta to 30 mg and my daily dose of Lamictal XR to 50 mg (those are the 2 meds with heaviest hepatic load). Now I have been able to reduce to 30 mg/day of Cymbalta, 100 mg/day of Topamax, and 25 mg/day of Lamictal XR. This seems to be the lowest I can go without breakthrough pain. Still avoiding all caffeine. My goal in future is to try to completely eliminate the Lamictal XR.
For you, things you can try that I have found useful to supplement the meds: daily breathing and meditation exercises, reducing stress in you life (really hard to do when you are in constant excruciating pain), and the elimination of caffeine.
When I have had too much pain to speak or drink the water needed to take my meds, I have found that digging my fingernails into my gumline along the area where the most painful flashes originate somehow seems to distract the pain enough for a few moments to allow me to get the job done. Apparently giving those nerves some “real” pain distracts them from the “confused pain” signals of the TN. Incredibly the “real” pain (which leaves bright red welts on my face) is much less painful than the TN pain. My family and friends can often tell when my TN is bothering me because I will do this without even being aware of it, particularly when my TN pain is just starting to flare up (which often seems attributable to stress or extremes either way in temperature or big changes in weather).
I will pray for you and wish you very good fortune in your treatment. Every person’s experience with the TN monster is very different, but I have learned a lot from the many generous, caring contributors to these sites.
I have been pain free for two weeks now. I had been taking 2400 mg/day of Neurontin, and now have cut back to just 600 mg in the morning. I have had TN1 since Jan. 2012 and have had a few months of remission twice in the period. Never have figured out what triggered a new event. It only (so far) has involved my left side nerve (from the left eye down to upper left teeth). Another thing I have been using and can't tell you whether it has really helped or not is Gallixa (you can Google it) cream. The ads claim it has helped some people with TN. Even though I can't say for sure it has helped me, I will continue to use it since I don't know why I am suddenly pain free. When I have the TN I can't shave, or brush my teeth, and it is difficult to have a conversation, and also hurts to chew food. It is a terrible disease and hopefully someone will come up with a fix that really works soon. My plan is to continue the Neurontin (low dose) and the Gallixa creme and hope the TN stays away. So bottom line is maybe yes - you can really hope to wake up one day and have no pain. Wishing you the best.
I have been a patient at Mayo - Scottsdale since spring of 2012. They basically said the same thing as what you experienced at Rochester (who are maybe one of the best clinic's in the world). I met with the Mayo surgeon who does the
the MVD surgery at Mayo Scottsdale and he showed me a surgery procedure on his iPhone. He has done numerous MVD's over the years and says he has a high success rate. However, I elected to see if the drugs work and really hope I don't ever feel I need to have the MVD. It is a 3 to 5 hour operation and not something I really want to do. Plus - I have been the main caretaker for my wife who is battling colorectal cancer. Getting old is not easy.
VAgirl said:
Golf Nut: If Mayo Clinic wants to do surgery - wow! I was there in Aug 2013 after a serious relapse to pain level 10++ (after a remission of 5 years where my pain was completely under control with only 30 mg of Cymbalta and 50 mg of Topamax per day). My local VA neurologist had increased my meds to 60 mg/day Cymbalta, 400 mg/day Topamax, and 100 mg/day Lamictal XR (all brand names medically necessary - and yes for TN brand names DO make a difference, to which I can testify, and for which my insurance co will pay), and I was getting no relief from 24 hour unremitting level 10++ pain. I could not even blink my eyes without triggering several minutes of stabbing pain, much less speak or eat or drink. Taking my meds in 4 doses a day was pure torture, but at least held hope that relief might eventually come as I titrated up to ever higher doses. But when my neurologist was fearful of higher doses, I went to Mayo - Rochester MN. As luck would have it, the meds finally started kicking in the day before I arrived at Mayo, but still with breakthrough pain. The Mayo docs were very candid about the very real and serious risks of all the available surgical, invasive, non-pharma options and advised not taking them until all possible pharma options had been tried. And the suggestion of eliminating all CNS stimulants such as caffeine was what ultimately eliminated the breakthrough pain - immediately. Common sense idea that nobody had ever before suggested and that I am embarrassed I had not considered before.
Now as to your question about statins. I have very high cholesterol (untreated - above 300, but that apparently won't be the death of me, since I was diagnosed with stage IVb pancreatic cancer in Dec 2013). I was on statins when my TN first reared its evil head in Aug 2005, in a most dramatic way. Eventually brought under control with 1200 mg Tegretol taken 300 mg every 6 hours around the clock. After about 2 years I was gradually able to reduce that amount. Coincidentally I began to take 30 mg/day of Cymbalta to treat chronic depression (Effexor had lost effectiveness). I noticed that I was no longer getting those heavy, dense feelings in the jaw and teeth that were effected by TN shortly before my dose of Tegretol was due so I began to stretch the time between doses out a bit to where the dose was very low. Then in spring 2008 some blood work came back suggesting I had developed leukopenia and the doctor told me to immediately quit taking Tegretol and have the blood work redone a week later. Fortunately the blood work returned to normal and during that week I had absolutely NO TN symptoms. Eventually I began taking 50 mg Topamax and the 30 mg Cymbalta + 50 mg Topamax combo kept me pain free until spring 2013 my when my TN bean to relapse, I believe due to the cumulative effect of a series of stressful family situations, and their impact on my normally very low blood pressure. In looking back at my medical records I see that prior to and at the time my TN first arose I was on high doses of Zocor, a statin drug. My prescription expired and my GP had moved away and I did not find another GP, so quit taking the Zocor; this was about a year before my TN went into remission. Later I acquired a new GP who prescribed 80 mg/day of Lipitor, which is a very large tablet. Prior to my TN relapse that began gradually in March 2013 I had been trying to take this Lipitor as prescribed (and I am usually a very conscientious, compliant patient) but just found myself unable to do so consistently. My body just would not allow me to do so - many days I found myself literally unable to swallow this tablet, despite being able to easily toss down all 3 of the pills in both my morning and evening doses of TN meds in a single gulp. So I find it entirely credible that there might be a connection to use of statins and a TN relapse.
So sorry to hear about your pancreatic cancer diagnosis. I sincerely hope you will become another pancan survivor! The son of a friend of mine is the young whiz-kid that has been on the news recently for discovering a rapid, cheap and accurate test for early detection of pancreatic cancer. It will change the lives of millions once it gets on the market. http://www.smithsonianmag.com/science-nature/jack-andraka-the-teen-prodigy-of-pancreatic-cancer-135925809/?no-ist
Good luck to you. I cannot imagine what you are facing, on top of struggling with TN.
VAgirl said:
Dear Borris:
I hope you have good insurance and access to good and a good family / friend support structure to help you cope with your TN. My 2 "remissions" have NOT been completely pain free without any medication. However, the first remission was only completely pain free with no pain breakthrough for several years on a very limited amount of meds (30 mg/day Cymbalta and 50 mg/Topamax.
I am in a 2nd "somewhat remission" but under very unusual circumstances. Was having to take max meds (60 mg/day Cymbalta, 400 mg/day Topamax, 100 mg/day Lamictal XR) and completely eliminate all CNS stimulants such as caffeine (colas, teas, etc) from my diet. After a few nights where I forgot to set the alarm for my 2am dose of Topamax, I discovered I could eliminate it with no ill effects. Then experimented with omitting the 2pm dose of Topamax, also with no ill effects.
A Dec 2013 very dismal and shocking diagnosis of Pancreatic Cancer with to liver inspired me to try to reduce my daily dose of Cymbalta to 30 mg and my daily dose of Lamictal XR to 50 mg (those are the 2 meds with heaviest hepatic load). Now I have been able to reduce to 30 mg/day of Cymbalta, 100 mg/day of Topamax, and 25 mg/day of Lamictal XR. This seems to be the lowest I can go without breakthrough pain. Still avoiding all caffeine. My goal in future is to try to completely eliminate the Lamictal XR.
For you, things you can try that I have found useful to supplement the meds: daily breathing and meditation exercises, reducing stress in you life (really hard to do when you are in constant excruciating pain), and the elimination of caffeine.
When I have had too much pain to speak or drink the water needed to take my meds, I have found that digging my fingernails into my gumline along the area where the most painful flashes originate somehow seems to distract the pain enough for a few moments to allow me to get the job done. Apparently giving those nerves some "real" pain distracts them from the "confused pain" signals of the TN. Incredibly the "real" pain (which leaves bright red welts on my face) is much less painful than the TN pain. My family and friends can often tell when my TN is bothering me because I will do this without even being aware of it, particularly when my TN pain is just starting to flare up (which often seems attributable to stress or extremes either way in temperature or big changes in weather).
I will pray for you and wish you very good fortune in your treatment. Every person's experience with the TN monster is very different, but I have learned a lot from the many generous, caring contributors to these sites.
Boris, I assure you that TN remission is COMPLETELY pain free, where NO medications are necessary. I had years of full blown pain, with a few short remission periods in between, three months or so at a time. In fact, I spent my entire 40s in TN pain. According to my neuro, I am in remission now. No pain for nearly a year. But no telling when or if it's coming back. If I had it to do all over again, I would rather have had the first MVD on the first day so I wouldn't have lost those years and could have something to remember my 40th birthday by other than sleeping on the couch during my dinner party due to the meds. All the best.
borris said:
For the people who have been in remission is it completely pain free for the time? I have only had this curse since end of September but not been pain free for one day during that time. However I havent had an episode that has left me in tears and shaking since 3rd Jan, during december I had 2 weeks of daily pain episodes that left me in bed for 2 weeks unable to eat and just crying for most of the time. I have returned to work 4 weeks ago and sort of believed (and toldmy boss) i was in remission, still experiencing upto 30+ flashes of pain each day, these vary from mild discomfort to making me cry out aloud in pain, this does result in me getting some funny looks, especially on the bus to work in the mornings, anyway i dont think (or i hope it isnt!)really remission. Can i really hope to wake up one day and have no pain at all?
I am so sorry for your struggles. We all know what you're going through, and I am sure that many would like to help, but the reality is that it is YOUR life, YOUR pain, and YOU have to take charge of it and do your very, very best to manage both. We can help with information, so if you have specific questions, please do bring them, and other than that, this site contains the BEST TN information in the world because it's based on patient feedback, and that's how we help each other. The sad and sorry truth is that if you have TN, your life IS changed forever, and even if you lose your pain somehow, it HAS changed you. The things I can suggest you do on a practical level is 1) Read up, LOTS, information is power. 2) Reassess your meds and dosages to try to get better pain relief and or less side effects and maybe see a neuro if appropriate. 3) Some people take anti-depressants, particularly if they're going through a hard patch - it's an option. 4) If you feel yourself spiralling mentally/emotionally, TALK to someone, a friend, a family member, a doctor, anyone. Being heard can in itself be very healing when you're emotionally low. 5) Understand that THIS is your life. Day by day it is YOUR time. Decide what else you want to do with the time besides endure your pain, and try your best to accomplish that. Giving up on the threads of your daily life is very isolating, so try to stay in touch and connected to other people and your general interests. Realise that depression is not forever. It too will pass. 6) Understand that some meds can CAUSE depression, so research the meds you're taking. 7) Be heard. Let the people in your life understand what you're going through. Print up information on TN to give them to help educate them. Tell them how you would like them to treat you. For instance, I once told my work colleagues to ignore my pain spasms because there was nothing anyone could do about it. Telling them makes them more comfortable and you will find yourself less excluded and less isolated. 8) Realise that doctors don't know everything. If you're not satisfied with your treatment, see another doctor. Do your own research and be a deciding factor in your own treatment.
All the very best.
Gunjan Sabikhi said:
I am getting into depression, cannot have this change my life forever ...cannot live in constant fear ...my husband really helps ...but still noone understands the depression which is building inside me ...my dreams are very scary ...please friends help me live a normal life
Really well thought out remarks. My wife is fighting pain relating to her fight with colorectal cancer. Going on over two years. I am going to share your comments with her as it is fitting for anyone dealing with a medical issue. Thanks for your thoughts.
Maur said:
I am so sorry for your struggles. We all know what you're going through, and I am sure that many would like to help, but the reality is that it is YOUR life, YOUR pain, and YOU have to take charge of it and do your very, very best to manage both. We can help with information, so if you have specific questions, please do bring them, and other than that, this site contains the BEST TN information in the world because it's based on patient feedback, and that's how we help each other. The sad and sorry truth is that if you have TN, your life IS changed forever, and even if you lose your pain somehow, it HAS changed you. The things I can suggest you do on a practical level is 1) Read up, LOTS, information is power. 2) Reassess your meds and dosages to try to get better pain relief and or less side effects and maybe see a neuro if appropriate. 3) Some people take anti-depressants, particularly if they're going through a hard patch - it's an option. 4) If you feel yourself spiralling mentally/emotionally, TALK to someone, a friend, a family member, a doctor, anyone. Being heard can in itself be very healing when you're emotionally low. 5) Understand that THIS is your life. Day by day it is YOUR time. Decide what else you want to do with the time besides endure your pain, and try your best to accomplish that. Giving up on the threads of your daily life is very isolating, so try to stay in touch and connected to other people and your general interests. Realise that depression is not forever. It too will pass. 6) Understand that some meds can CAUSE depression, so research the meds you're taking. 7) Be heard. Let the people in your life understand what you're going through. Print up information on TN to give them to help educate them. Tell them how you would like them to treat you. For instance, I once told my work colleagues to ignore my pain spasms because there was nothing anyone could do about it. Telling them makes them more comfortable and you will find yourself less excluded and less isolated. 8) Realise that doctors don't know everything. If you're not satisfied with your treatment, see another doctor. Do your own research and be a deciding factor in your own treatment.
All the very best.
Gunjan Sabikhi said:I am getting into depression, cannot have this change my life forever ...cannot live in constant fear ...my husband really helps ...but still noone understands the depression which is building inside me ...my dreams are very scary ...please friends help me live a normal life
I am ATN type 2 and one thing I can say for me is after a good sleep I usually wake without the pain but it starts off mild in 10 minutes, maybe an hour. I think there is something the brain does during sleep, wish they could find the substance the brain is releasing during sleep and put it in a pill. I will take a nap and wake for a minutes and the pain is not noticeable. However I have atypical GN and when that is flaring up sometimes through the night just brushing my ear lobes on the pillow causes pain so sometimes that one bothers me during sleep. I do understand just a light touch can trigger pain with these cranial neuralgias. Sharon
Gunian, I just read your comment. The depression I believe you are feeling is normal. When a disease comes along and interrupts your life you are experiencing a loss. You go through denial, anger, depression, and somewhere down the road acceptance will come and I promise you the depression will lift. In the meantime search for help, get to a good neuro and then a good neurosurgeon if surgery is an option. Search this site and read and read, someone will offer something that is just like you that may help. Never give up. Sharon
Gunjan Sabikhi said:
I am getting into depression, cannot have this change my life forever ...cannot live in constant fear ...my husband really helps ...but still noone understands the depression which is building inside me ...my dreams are very scary ...please friends help me live a normal life
I think you might have something here, about the brain doing something during sleep. I so wish researchers into TN could pick up on these little gems!
All the best.
Granny said:
I am ATN type 2 and one thing I can say for me is after a good sleep I usually wake without the pain but it starts off mild in 10 minutes, maybe an hour. I think there is something the brain does during sleep, wish they could find the substance the brain is releasing during sleep and put it in a pill. I will take a nap and wake for a minutes and the pain is not noticeable. However I have atypical GN and when that is flaring up sometimes through the night just brushing my ear lobes on the pillow causes pain so sometimes that one bothers me during sleep. I do understand just a light touch can trigger pain with these cranial neuralgias. Sharon
There is remission! Keep the faith. My type-1, V1-only electrical, stabbing pains started in Feb 2012. I averaged about 100 per day, up to 500 on some days, for 8 months. Lots of meds and med-combo platters. After I did more and more research (Striking Back is a highly recommended read), then recommended a combination of 900mg Gabapentin and 900mg Trileptal to my Neurologist, the frequency and severity started to decrease. By Dec 2012 I was wondering if I was going into remission or if the drugs were just doing a good job masking the symptoms. The only way to know is to wean yourself off of the drugs and see what happens. By Feb 2013 I was drug-free and 99% pain free. I'd occasional have a bad day but not like 2012's horrendous pain (drugs or not) that had me not caring if I lived or died. Thank God I had a loving wife and support team. By May 2013 I felt sure that I was in true remission and got a new job in June 2013. I've been pain-free for 10 months except for half an hour early the morning of December 20th when I had 12 horrendously painful stabs in the usual two spots in my left forehead that were more severe than anything in 2012, which I didn't think could be possible. But nothing since. Yes, I do occasionally get a sensation in my left forehead that I refer to as my evil friend that is reminding me that it is going to get me again sometime in the future. I hope this story helps someone. Remission can mean different things to different people. But it is possible! This is such a strong condition that seems to affect everyone differently. If I can work, smile, enjoy life and not be on drugs, I call that remission. Good luck to everyone. And thanks to everyone for supporting me during my dark and painful days. We all need to support each other. Unless you have this condition, it is impossible for anyone to understand what it is like. And yes, I hate it when people would say "well, you look good". God bless you all.
Hi…
I had a remission of sorts…
My first episode, lasted 4months…unbearable…electric pain…tn1…displaying in v1 v2…it reached its greatest height of frequency and intensity after 3 months…and gradually upsides…to daily…mild…or beatable pain…rating at top end of out 10… Was at least 20…at the end of dirt episode… Pain level was down to a 4… And greatly decreased frequency of electric shocks…mine were hourly…sometimes minutes apart… I had a few months of being able to eat…wash face…brushteeth…go outside! Life wAs beautiful…and such a gift!!! Then in the space of 2 days…it was back with a venegance…worse than the first time…now i couldnt blink or swollow…without pain…i went to emergency…no help…4 days to nuerologist…i understood sicidical pain for the first time in my life…do you how often you blink or swollow…until you cant! Nuerologist immediately switched my srugs to tegratol…in 2 days to week…i has me back!!! Then the drug haze set in…a bubble between me and the world and my brain…forget being able to think…talk…I slept 14 hours a day…I booked into a surgeon…I had done my research! 1 year later…I am considered a great success (mvd…btw)… Was a long road back…have ear issues, I am now diagnosed with a migraine disorder and primary stabbing headaches…nothing to worry about really…a mild drug…to keep headaches under control…and off to see a neuro ear speAcilaist in a month…no one person is the same…every recovery is as different as our DNA…I have found blessings…peace… I’m not what I use to be before tn…I live with a strict sleep schedule, or I’m ruined, vitamins…occasional yoga, chiropractor for the cervical spine…tons of water…minimize stress…these things I will always live with now…the old me I tried to find…is physically different now…I have a new normal!
Do your research…talk to the people here…they were in my hours of need…a angel sent from heaven…find what works for you!!!
Be as pain free as possible…I wish you…pain free days…from your body, heart and soul.
I have been in remission for over 7 years with TN2 on my right side for 3 months before remission. My only medication was Neurontin. 900mg per day. AND I only took it until the pain went away and then quit the meds. Since then, several years later, I have also developed ON and GN and TN2 on my left side, inwhich I am suffering now. It has been 5 months with no remission with the left side TN2.
justjane37 said:
I apparently had a remission of seven years! I was diagnosed with ATN and stayed on medication for two years. When I went off it was gone until last year. I am now on the same medication. I am wondering if it is a rare for it go away for that long?
Mine came on very slowly this time over a period of a few months. I have been pain free on medication now for about six months. About two months ago I tried to slightly reduce my medication and it was still there. Went back up to where I was and all is good again.
Dear All,
This thread , with all the responses, pretty much hits on all the bases. So I just have to ask everyone, the downsides of taking Tegretol/Carmamazepine 100mg X4 and Gabapenten/Neurontin 300mg X4 daily as I have since early 2009? This combo has kept me from having # 8-10 Face Taser attacks for the duration. However, my memory has gotten terrible (probably the Tegretol)…
I love you all and would appreciate any input re: these two medications ; particularly potential liver damage issues. Please advise. Thanks.
Blessings,
Rick Bruce
When I was taking Gabapentin, I could not even complete a sentence. I was often dizzy and lost my balance frequently. I was never able to get to a therapeutic dose because of the side effects. Tegretol made me horribly nauseated and did not help the pain at all, so I stopped it.
Rick Bruce said:
Dear All,
This thread , with all the responses, pretty much hits on all the bases. So I just have to ask everyone, the downsides of taking Tegretol/Carmamazepine 100mg X4 and Gabapenten/Neurontin 300mg X4 daily as I have since early 2009? This combo has kept me from having # 8-10 Face Taser attacks for the duration. However, my memory has gotten terrible (probably the Tegretol)…
I love you all and would appreciate any input re: these two medications ; particularly potential liver damage issues. Please advise. Thanks.
Blessings,
Rick Bruce
I think what it all comes down to in the end is we have to ask ourselves, is what we are taking in terms of medication (and the side effects of said meds) better or worse than the pain we'd have without the meds, and I believe most people with full on TN would say that anything that helps to ease the pain is better than the pain. That said, I believe one's medications should do better than reduce the level of pain from a ten down to a 7. Regarding your anti-seizure med, your regular blood tests are for the purpose of monitoring the health of your liver, and even then, it comes down to the same question; are you prepared to pay the price of possible liver damage in order to get the amount of pain relief you get? I always used to wonder, if it came to that for me, what I would choose to do. It is a very good question. Doctors would undoubtedly want to take you off the anti-seizure if they detected possible liver damage, but the reality is, they are not suffering your pain and they don't really have an alternative med for you (to my knowledge). I don't think your Tegretol dose at 400mg a day on its own could cause such damage, except possibly very long term (but I could be wrong of course), but I think if anything it could be the combination with the other drugs, and those I can't comment on having never had any of them. I experienced a lot of memory loss on extremely high dosage of Tegretol, (up to 2400mg/day back in the day!) and found in the end it was wiping out my long term memory. Interestingly, during long remissions I've found those memories come back with little prompts, like discussions with friends or family and sharing photos can be light bulb moments of memory return. Also remember that with normal ageing comes some memory loss with everyone, even the healthy, and the level of this can vary a lot. My mum at 80 could remember her class mates from primary school, but at 82 battles to remember yesterday, and she's never taken any long term drugs. I think it's normal. For TN patients, photos can be very important reminders in later years, so get out your cameras!
It's always good to bear in mind that EVERY TN patient experiences TN differently, in terms of intensity, location, duration, remissions, treatments, everything, making every TN patient UNIQUE for the medical world to tackle. There therefore is no blanket treatment for everybody.
I think it's REALLY important for TN patients who are having full on TN, who are taking meds but still experiencing pain, to RE-ASSESS REGULARLY their own meds and treatments, or you could be experiencing YEARS of pain and drugs unnecessarily, when it might just take a relatively small adjustment to your meds to obtain a greater degree of pain relief and vastly better comfort and lifestyle. Small changes can make huge impacts on the pain. Particularly READ UP on what works for other patients on this site. All the best.
Rick Bruce said:
Dear All,
This thread , with all the responses, pretty much hits on all the bases. So I just have to ask everyone, the downsides of taking Tegretol/Carmamazepine 100mg X4 and Gabapenten/Neurontin 300mg X4 daily as I have since early 2009? This combo has kept me from having # 8-10 Face Taser attacks for the duration. However, my memory has gotten terrible (probably the Tegretol)…
I love you all and would appreciate any input re: these two medications ; particularly potential liver damage issues. Please advise. Thanks.
Blessings,
Rick Bruce
chickee, I had ATN type 2 before and after tmj surgery in '86. I know it persisted for years after that surgery 5 plus years then quiet for over 20 years. I would get a slight sign of it with some cheek pain if I was directly under an AC vent or ceiling fan during those years telling me it was still there. Fast forward to 2011 I started to first get a bitter taste in my mouth and then the cheeks would hurt on and off, then constant facial pain covering the cheek, mouth, upper lip and jaw area. That is the constant 24/7 building in intensity. Meanwhile treating the bitter taste with a mouth rinse for dry mouth which did not help. About 9 months into the facial pain I started to get GN, atypical, although it did start with stabbing pains in my ears and stabbing pain in my jaw when chewing. This came on suddenly, like a slap to the side of my right ear which was worse than the left, ear ache, ear pressure and fullness and ear lobe pain. My pain has a cold achy sensation to it.
I do get botox for my neck and the neuro started going into my scalp but the only sites he knew where to go were for ON which was also presenting. PT, a hands on approach to release the trigger points for ON and the botox have helped with the ear pain. I am not a candidate for surgery being atypical and I have also responded to at least 3 sufferers of AD, that is the nerve injury one after MVD or any other invasive procedure and they have the cold sensation.
So I am waiting on back surgery March 25th to get back on my feet again and I am going to be looking for a neurosurgeon or pain doc that does PNS, peripheral nerve stimulation and also I found a page discussing a steroid injection being done right at the TN nerve. I am arthritic every level of my spine that has been fused, and there are many levels, all lumbar, 3 cervical, so I am guessing I may also be arthritic at the tmj joint. I have never regained a normal opening since surgery, but that surgery for tmj did stop screw driver ear pain which is different from GN ear pain. I went the route from neuro to neurosurgeon and then ENT and the most interesting thing the ENT doc said was the tmj joint is only 1 mm away from the TN nerve, even my neuro agreed. Trying to figure out if I am having a mild flare up of tmj causing the GN.
Anyway, yes, I have discussed with my doctors that remission is possible again. I am hoping this PNS will help me get there. I am wondering if there is remission even with true TN 1 then is there really a nerve compression or how does the compression stop bothering you, do we all have a blood vessel on the TN nerve and some never get the pain of TN. Is it faulty signaling of the TN nerve? So all these meds are supposed to suppress that signal in our brains. I failed on tegretol, lyrica and cymbalta but am now on a combination of gabapentin which I have always been on for nerve injury from spine surgery, but the dosage was doubled, 600 mg. 3x, baclofen 10 mg. 4x and amitryptiline 50 mg. bedtime. I also take some narcotic. Percocet 7.5 mg. 3x. I asked for an increase as you do become tolerant and my pain doc does not like to increase short acting narcotics so 15 mg. time-released morphine 3x which is like doubling my percocet but the idea behind time released meds is to off set spikes to 8 or 10. That is not always the case, I would rather have an increased dose of the percocet as I think that one is the most helpful but my pain doc does not want me to be getting over sedated on short acting meds.
Here is to hoping for remission by the time I find a doc that does PNS. REMISSION is possible. We have that to hope for but in the meantime meds are somewhat helpful for me. Some of you get great results with meds without the horrible side effects I got and of course some do not. We are all wired differently, our brains are wired differently so that I believe is the reason to keep coming back to this site and read and read about all of us that suffer, sometimes we find someone who suffers similarly to yourself and has found a treatment that works. This support group has far more info and research than my neuro does. Sharon
chickee said:
I have been in remission for over 7 years with TN2 on my right side for 3 months before remission. My only medication was Neurontin. 900mg per day. AND I only took it until the pain went away and then quit the meds. Since then, several years later, I have also developed ON and GN and TN2 on my left side, inwhich I am suffering now. It has been 5 months with no remission with the left side TN2.
justjane37 said:I apparently had a remission of seven years! I was diagnosed with ATN and stayed on medication for two years. When I went off it was gone until last year. I am now on the same medication. I am wondering if it is a rare for it go away for that long?
Mine came on very slowly this time over a period of a few months. I have been pain free on medication now for about six months. About two months ago I tried to slightly reduce my medication and it was still there. Went back up to where I was and all is good again.