Glanpini I had very bad TN1, took the meds and it went into remission. According to what I read, this remission will not last. I worried myself sick over this and at first lived in fear of it returning. It has been 21 months now and each day I give thanks that is has not returned. I did develop TN2 or Neuropathy not sure which it was which lasted a year but that also has stopped (although it does come and go). I now choose not to believe everything I read as we are all different. I see peoples names here that appear a lot as they are in so much pain, and then they stop writing I choose to believe that they have their lives back and choose to get on with it and that is why we dont hear from them again. This can be because of the right meds, surgery or like me remission. There are a lot of success stories but we just dont get to hear about them. xxx
Jackie:
ok, now that it has been exactly 17 days, 3 of them with Baclofen added, I have no pain. It is really great, but now not sure if it was the Baclofen or the Neurontin or maybe they have a synergistic effect?
Anyway, it is great to be pain free for 2 days now.
Thanks for your reply, too.
Teacher
teacher said:
Hi:
not sure of the person who wrote this, about anyone having any success stories?
I tried B12+B1 injections and for over a year, I was pain free with them. Now they do not seem to work, but I will try again in another few months.
I also tried homeopathic herbs from Biogetica.com, and they worked for about 6 months. Then you have to get off them and go back in about 4-6 months.
I am on Neurontin and Baclofen, now, neurontin at 1200 mg. I am not sure if it is helping at all. I have never had such long and painful attacks about 50 a day. the Baclofen has reduced the attacks to half a day now, but haven't been on it too long. My doctor keeps saying, wait, it takes time to work. Well after 2 1/2 weeks of this long 30-60 second shocks, it is hard to wait.
so I am begging anyone who has had experience starting with Neurontin. How long does it take for some pain reduction on it? 2 weeks, 4 weeks, or should the doctor, in his experience, try me on another pain med? I tried Trileptal, last year, and at the most had about 4-5 long shocks a day. A big improvement over the Neurontin, right? But then Trileptal if you go up more than 1200 mg can have side effects, that maybe Neurontin doesn't? not sure.
anyone with any experience with Neurontin, please give me some info.
thanks,
teacher
Dear Glanpini:
I think you have to get a good MRI from a good Neurologist. sometimes it can see if there are arteries or nerves fallen on the Trigeminal Nerve or not. If there aren't any, then I have also heard that it can possibly be caused by a virus or even shingles on the nerve.
If it is this, then getting a shingles shot has helped some people There are also some remedies that might help, if it is a virus. but you first have to rule out some things, with a good MRI.
I thought I had had a good MRI, 5 years ago, by my regular doctor. Now I find out that I should have had some contrast liquid injected, to help the MRI to see things more specifically. this is what I just had completed, by my new Neurologist.
I will soon find out the findings.
teacher
The gold standard for imaging in assessment of the trigeminal nerve is the "FIESTA" MRA procedure, conducted both with and without contrast agent and with special magnet weightings to offer 0.66 mm resolution in the regions adjacent to the brain stem. Images should be processed for 3D visualization after the procedure.
Likewise, Post Herpetic Neuralgia is somewhat different from Trigeminal Neuralgia. PHN seems to respond well to an initial prompt administration of an anti-viral agent (Acyclovir) in combination with several weeks on Neurontin. Neurontin and Baclofen are indeed synergistic for TN, though probably not so much so for PHN. I don't think anybody quite knows why Neurontin is more effective against PHN than other meds in the same family of anti-seizure agents.
Regards and best,
Red
Hi, I have had TN for almost a year now ... I was very lucky that when I presented at the emergency room the doctor took one look at me and told me it was TN (earlier that day a doctor had said migraine then the pain got so bad that I would of taken childbirth over that pain!). Side effects to Tegretol landed me in hospital and then gabapentin didn't work and I landed in hospital again ... that was the worst time, feeling that I would never hit anything that would work for me. But now I am on Epilim for the TN and Amitrip as an antidepressant (hey, TN would depress anyone!) and also to lessen any pain. It works for me, sometimes I have pain especially in my nose on the TN side or the usual place I got the unbearable pain but now it's an annoyance - it's not bad enough to stop what I am doing ... whereas at my worst point I would have to hide away so the kids couldn't see me and cry so hard that I didn't make any noise, just rock back and forth. I'm so glad I have seen some decent doctors and my hope for all of us is finding successful treatment, whatever that may be.
not sure why but this post hurt my feelings...its very abrupt and to the point....but the to the point answer would be yes this is the rest of your life there is some hope out there for type 1 patients get an mvd for type 2 patients not so much u get to take meds the rest of your life and hope that helps...there are surgeries you can try but they can do worse damage its all about your choice to flip the coin. sux i know im living it
Hi Glanpani
Yes, it seems sad and sounds hopeless, but only if you let it be that way. Being misdiagnosed for many, many years and now knowing that I have TN doesn't change what is. The pain sucks, but still life carries on for me and I will also bet for many others that check in here. We might moan and complain because we hurt (either a strong, omg stabbing pain, or that dull, relentless ongoing throbbing pain) but still, I think, most of us also love and laugh and work and play and make it through the days because we want to. The success for me is not in getting the pain gone (I don't think that will happen) but in enjoying my days as much as I can. And yes, I take time-outs to just breath and get through the pain. Perhaps you don't hear about the successes so much because when we are having good days we are often not on this site, but rather catching up on the things that need to be done. (please no offence intended to anyone with that statement). Hang in there, reach out when you need to and know that you are thought of and sent good wishes and vibrations. ~ Valarie
Hi,
Thank you all for your advice and your help. The response has been truly amazing.
Since I wrote this I have seen my neurologist, had my MRI scan and, today, had the results. Thankfully this has all happened very quickly.
I have started a new post about this but the MRI showed a Schwannoma Tumour pressing against the 5th cranial nerve. The Tumour looks benign. although it is early days. I'm not sure how i feel about this, i'm still in a daze about all of this.
To Jstagrl29 - My post didn't mean to sound abrubt nor rude. I feel for everybody suffering this and understant they have to have somewhere to tell their whole story so that others can understand and help.
Maybe frustration at the time because i had no idea what was going on and i wanted some reassurance but things i was reading scared me. i see very few positive things, however now looking closer i see positives in peoples stories.
thank again so much. Will update soon!!
Dear Everyone with TN:
We are constantly bombarded with mailings and messages about: "Give to the Cancer, Heart, Prostate, funds, etc, but we never hear about any donations for research for Trigeminal Neuralgia.
I have finally found a place, doing research, starting February 2013,to help find out what is an expected cause of TN. 40% of adults have nerve compression, but no TN symptoms. So far, this is what has been found out. So nerve compression is only a small cases of the cause.
I know I want to hear news and help those doctors, who are volunteering their time for this advanced research, to help with this affliction and its causes and prevention.
Here is the link:
You can find some hopeful messages and a way to help, even if it is a small way.
thanks for listening and reading the article.
Teacher
Valarie said:
Hi Glanpani
Yes, it seems sad and sounds hopeless, but only if you let it be that way. Being misdiagnosed for many, many years and now knowing that I have TN doesn't change what is. The pain sucks, but still life carries on for me and I will also bet for many others that check in here. We might moan and complain because we hurt (either a strong, omg stabbing pain, or that dull, relentless ongoing throbbing pain) but still, I think, most of us also love and laugh and work and play and make it through the days because we want to. The success for me is not in getting the pain gone (I don't think that will happen) but in enjoying my days as much as I can. And yes, I take time-outs to just breath and get through the pain. Perhaps you don't hear about the successes so much because when we are having good days we are often not on this site, but rather catching up on the things that need to be done. (please no offence intended to anyone with that statement). Hang in there, reach out when you need to and know that you are thought of and sent good wishes and vibrations. ~ Valarie
Glanpini,
I’m sorry that you have a Schwannoma, but I’m glad you now have an answer. It’s scary to hear the word “tumor” or “growth” but fortunately majority of these are benign and grow slowly. I have not had one but have 2 family members that have, not on the 5th CN, and had surgery. It doesn’t make me an authority in them, but I was with them through the process. Like with anything else it can be scary and confusing at first. I hope you are able to find the best course of action for yours and that you have great results. You have thousands of friends here to help you whenever you need.
Hello, While I am miserable currently, I want you to know that my TN has gone into remission for years more than once, like 4 times. So don't give up!
Sister, have you any theories why and how the remissions happened and what triggered them again?
Strange that you should ask as I have been thinking about this a lot lately.
When it first began I was a police officer in Tucson AZ,1995 or so, it was hot, I was very stressed most of the time and had no idea what it was. Had some teeth pulled, took antibiotics for sinus infections that were not really there- you know the drill. The attacks only lasted a week or so. There was a strong suggestion that I had Multiple Sclerosis but they could not prove it to my satisfaction. That scared me so I retired ,and I moved to Montana. Well darned if it did not come back- and now cold hitting my face seemed to be a trigger as well. Again I went the tooth, sinus route...it went )away but lasted a bit longer. Then a few years went by with only occasional zaps. Had another bad bout (now we are in 2008) that caused me to take two weeks off work and stay drugged out the whole time. Now I knew what this was and went back on the meds etc. Lasted two weeks and suddenly went away. Oh, sorry had a bout in like 2000 and again in about 2004. And of course now and this bout has lasted 6 weeks already and has been the worst yet. The only thing I can find is that each time my face caught fire was after I had a virus? Like usually it was a cold or flu. So I am trying to stay away from large groups of people during flu season from now on.
Brownkat,
Thank you for telling your uncle's success story. My MVD was 2 months ago and when I find myself worrying about the future and if or when the TN might return, I go back and read what you wrote about your uncle remaining pain free after 20 years. Your note was the only one I have ever seen that has an example of a really long
term success.
I hope we all have that story to tell someday!
brownkat said:
Glanpini,
I put up with TN for about 10 years. It took 4 years to get a diagnosis and I spent about 6 years on various levels of meds. I enjoyed many months at a time when I had no pain at all. It came and went in waves, but got progressively worse. I found out several years ago that my uncle also had TN and had had successful MVD surgery after going through years of being misdiagnosed, also. He advised me to have MVD surgery as soon as he found out I had TN. His surgery was done over 20 years ago and he is still pain free. I didn't listen and ended up in a situation where my MVD had to be done on an emergency basis because I was starving and dehydrated to the point of danger.
I was afraid to have surgery because I still thought my pain was caused by dental injury and that there would be no artery wrapped around a nerve when they opened me up. I was wrong, I should have listened to my uncle and had the surgery 2 years ago before it got to the point where my meds quit working. My surgeon did find a very large artery pounding against a very grooved nerve and was able to take care of it.
My uncle is still doing very well and has no TN pain at all. I hope to have the same long term outcome. I just wish I had listened to him and had the surgery sooner. You need to do your research and talk to various neurosurgeons about which technique is best for you when meds become less effective. That way you are prepared and empowered to make the decision when the time is right.
Sister, thanks for explaining the pattern it is so very confusing isnt it? Mine was triggered by a cosmetic procedure which in theory should not be a trigger...... but who knows. Yes stay away from any unwanted virus's and I will stay away from any further cosmetic surgery! Keep Well xx
Dear Sister:
wow, each time my Trigeminal Neuralgia seemed to emerge (but unfortunately have had no remissions) were after a sinus infection, usually followed by the flu or a cold. I still had the TN,but after the flu and sinus infection, it has been more resistant to treatments.
I do think there is a link here,since some research suggests it, as one possible cause, too. But it isn't related to any dental procedures, either, which can be the case for some. It seems to be more related to a sinus infection. Infact, it first started for me, after a sinus infection, that I couldn't get rid of for 3 months.
sister said:
Strange that you should ask as I have been thinking about this a lot lately.
When it first began I was a police officer in Tucson AZ,1995 or so, it was hot, I was very stressed most of the time and had no idea what it was. Had some teeth pulled, took antibiotics for sinus infections that were not really there- you know the drill. The attacks only lasted a week or so. There was a strong suggestion that I had Multiple Sclerosis but they could not prove it to my satisfaction. That scared me so I retired ,and I moved to Montana. Well darned if it did not come back- and now cold hitting my face seemed to be a trigger as well. Again I went the tooth, sinus route...it went )away but lasted a bit longer. Then a few years went by with only occasional zaps. Had another bad bout (now we are in 2008) that caused me to take two weeks off work and stay drugged out the whole time. Now I knew what this was and went back on the meds etc. Lasted two weeks and suddenly went away. Oh, sorry had a bout in like 2000 and again in about 2004. And of course now and this bout has lasted 6 weeks already and has been the worst yet. The only thing I can find is that each time my face caught fire was after I had a virus? Like usually it was a cold or flu. So I am trying to stay away from large groups of people during flu season from now on.
I know, it took me a long time to figure out what triggered mine as well. When I lived in MT I lived in a very remote place and did not have contact with many others. I also worked at a place that did not tolerate sick people coming to work or clients arriving sick for a therapy session. I did not do the grocery shopping and seldom entered any place where there were crowds of people especially children. Prior to 97 I lived in Tucson and worked as a police officer and was around sick people daily and had many bouts of TN that I thought were sinus or tooth pain. Ended up insisting on having all of my teeth pulled and had my sinus's flushed several times trying to stop the pain. I never was diagnosed in Tucson- It took a small town doctor in MT to put a name to my pain. I am so thankful to have the diagnosis and the availability of meds to at least try and reduce the pain. I do not know if I can afford to have the surgery through the VA or not but am checking on that now. All total I believe I have been suffering from this illness since about 1990 or 23 years.
Sister it is so bad that this goes undiagnosed by so many doctors. To suffer for so long and not know what the problem is, makes it even worse. Best Wishes for the future xxxx