It seems as though the Tegretol isn't working as well for me. I've also moved recently and the new family doctor, although seems that he knows alot about TN, does not think that I require a neurologist . I am also unemployed and have medicaid coverage, which I'm not so sure how much they'll cover or not... I'm not sure what to do :(
Following this coughing from the flu, it seems to have the TN worse for me. It's like there is very little relief. I have a constant knife above my eye, and the electric shocks have been pretty constant. I can't cover my head, because when I touch my hair, the shocking is worse. Washing my hair, has been a nightmare, and even talking anything loouder than a whisper is painful. Being new on this site - I just haven't been able to find advise as to which way I need to turn.Can anyone be of help?? Is surgery the only answer? How does one know, which road to follow??
I am so sorry you are suffering:( Reading your areas and types of pain is like reading the way I used to feel. I, also, was on tegretol (Carbamazepin) and i would have breakthrough pains and have to up my dose. Anyway, long story short, I had MVD surgery 10 months ago and I am completely pain free and off meds. I have no idea about your insurance coverage or where you live, but I will say, my surgery was done at Johns Hopkins Hospital in Baltimore, MD by Dr. Michael Lim. People come from all over the country to see him. Go to their website and do some research to see if your insurance would cover surgery there - if you are interested. I suffered from TN for roughly 2 years. I am only 40 (now) years old and did not want to suffer and work with a cocktail of drugs for the rest of my life which is why I decided to take this big step. I am THRILLED with the results and totally have my life back. I wish you all the best and just can't say enough - don't be scared of the MVD surgery, even though it can seem scary. I chose this surgery because it has the best success rate. Good luck!!
http://www.livingwithtn.org/forum/topics/positive-thoughts-1. for the path i took, the neuroligist was not helpful but a required step in the insurance process leading to surgery. read up on this site to see what your options are then get your doctor to help chart a course. some people dont want any surgery and if you are one you need to get your meds adjusted to deal with the pain so you can function. good luck
We all know how you feel and how bad it hurts.And it gets real bad.I still can't enjoy a shower like i used to for worry of the pain strike.I am so sorry.What drugs are you taking?You may need to up your dose or try something else.A good GP can take care of you alright with drugs.Mine did.But finally recommended surgery (MVD)for me as he had another patient that had it done with perfect results.Turns out i had a AVM causing my problem(they think) and treated that with Cyber knife.I still had a bad relapse 6 months later so had Gamma Knife for the pain.Other than some tingly numbness around the eye,im good for now with no meds.But, a good Neuro is most likely to get to the problem and actually fix it.Have you had an MRI?Sometimes they see see the compression or another problem like mine.Also pain management docs can be useful.I don't know how any of that works with Medicare.Hoping your pain lets up soon.Lots of tips and support here so hang out with us and we will help if we can. ( :
I feel for you! I would make some phone calls to find out if MVD is covered. Sounds like your new doc feels like he can handle TN! Ha! How very confident of him or her! ( sorry for the sarcasm!)
Have you heard of the book- “striking back, the TN handbook”. I highly recommend it. (Library, or Amazon.com) Puts everything into perspective. There are several options, mainly because each case is different. There isn’t a one - size fits all solution. But none if the options are 100%. I had consults with 4 Neuros. They all said the same thing. The MVD is the most invasive, but in the right hands is the best long term outcome. I began my search for those hands! At the recommendation of someone at this site , I corresponded with Dr Ken Casey, in Trenton, MI, and had a consult. I am now 7 months post op, pain and pill free, and would jump on that Surgical table again in a heartbeat! I think the most important thing is dealing with a Dr who has a lot of experience, and is actively working with TN. Not just someone who has heard of it and is following the medical guidelines.
Be your own advocate, good luck and keep in touch!
Tegretol didn’t work for me, and sometimes it takes a combination of pharmaceuticals to get you to a comfortable place. Switched to Oxcarbamezapine , a sister drug to carbamezapine (tegretol). That change along with some other adjustments helped me, perhaps you’d benefit as well?
Also I’ve had micro vascular decompression. I felt the sweet, sweet total relief of TN pain for three whole months (while I was recovering) then (for me) the pain returned. I found cold laser therapy which has been my only saving grace, the only thing that has given me any sense of hope. Check out Theralase.com then go to clinic locator. I wish for you hope.
I feel your pain! Took me years to finally see a neurologist and then have cyber knife treatment & I’m covered by Medicare. Pain free for over 3 years but have severe numbness on right side of face! I’ll take the numbness over pain any day! Good luck.
Please run, don't walk to the best TN neurologist doctor you can find. My nightmare with TN started a year ago but when it came it came on like a bat out of hell. It changed everything about my life until I was started on Tegretol by my family doctor. I did my homework, found a top notch TN doctor and made an appointment with him while I was feeling normal. He gave me all the information I was looking for and warned me about seasonal change being a trigger, he was right! When the Tegretol stopped working I knew I had had enough (TN is a progressive disorder) and opted for MVD surgery. I have never looked back. I have some issues from the surgery that are still in the process of healing but I CAN now talk, smile, laugh, eat, brush my teeth and live a life which I couldn't do before. I know surgery is not for everyone but when TN took over my life, it took everything away from me. I was a shell of a person living in constant pain and fear. I told my family I would rather die on the table then live the way I was. I choose MVD because of the long term success rate, my age and physical condition. The other surgeries usually only last 1 to 3 years and by then I may not have been able to have MVD. I will keep you in my prayers.
To Domelover: I had a Gamma Knife procedure done nov.7,2013,a l.ittle over 10 weeks ago.I am 90% pain free, and not taking any meds for TN.When I do occasionally have pain,it is bearable and doesn't last long,and the pain is in a different area of my left side of my face.For the most part I feel a lot better than before my GK procedure.I was on 800 mg of tegretol before the GK.I can talk and eat with no problem now and also shave and touch my face with no pain.I really wish you good luck and hope things work out for you.....take care....Dave W.
I can't speak of everyone but I had surgery 11 years ago this May and I've had no relapses. I thought I was having one a few weeks ago but was just being paranoid. There are all kinds of side affects from the surgery but every single one of them was worth. Even when I get a really bad migraine (one rare side affect of the surgery I got), it isn't a drop in the bucket to how much pain I was in before the surgery. I hope you get relief soon!
I was also on Tegretol along with Neurontin and DepaKote for the TN and living still in pain and in a fog. I found an excellent neurologist and, in turn, an even greater neurosurgeon. I had MVD on October 3, 2013 and have been pain free and off the meds. I can’t tell you how great it is to have my life back. I chose MVD because of its long-term success rates and the side effects didn’t seem to be as bad as with other procedures. Before my decision, I got informed about the other procedures available, especially, gamma knife. For some reason, that just scared me more than the MVD. As someone said, I would jump back on that table in a heartbeat. I understand your pain, as we all do, I couldn’t stand to wash or brush my hair either. I would just grit my teeth and cry whenever I had to do it and, oh my, using the blow dryer was even worse. My neurologist was Dr. Jay Acosta and my neurosurgeon was Dr. Luke Corsten, both at the Neuromedical Center in Baton Rouge, LA.
colliegal said it like i was thinking and saying to my family. the meds did not work well and tn was taking my life from me, so i would have rather died on the table then keep going that way, just waiting till it got worse. i had the mvd and that worked for me. i had a csf leak that was a bear to deal with, but all in all better than tn!!! i have no pain now, it is like it never happened, except for the knee jerk reactions when i go to blow my nose or something that would trigger it before...but that too is passing. if your healthy i say go for the mvd asap
Hi colliegal, How do you know how experienced a nuero is withTN or ATN? I have called several nuero offices and they will not answer me when I ask how many patienst they have treated with TN. They just say the doctor treats it. I don't even have a definite daignosis on what is wrong with me. Any advice on how to find an experienced nuero would be greatly appreciated. Gizmo
colliegal said:
Dear Domelover,
Please run, don't walk to the best TN neurologist doctor you can find. My nightmare with TN started a year ago but when it came it came on like a bat out of hell. It changed everything about my life until I was started on Tegretol by my family doctor. I did my homework, found a top notch TN doctor and made an appointment with him while I was feeling normal. He gave me all the information I was looking for and warned me about seasonal change being a trigger, he was right! When the Tegretol stopped working I knew I had had enough (TN is a progressive disorder) and opted for MVD surgery. I have never looked back. I have some issues from the surgery that are still in the process of healing but I CAN now talk, smile, laugh, eat, brush my teeth and live a life which I couldn't do before. I know surgery is not for everyone but when TN took over my life, it took everything away from me. I was a shell of a person living in constant pain and fear. I told my family I would rather die on the table then live the way I was. I choose MVD because of the long term success rate, my age and physical condition. The other surgeries usually only last 1 to 3 years and by then I may not have been able to have MVD. I will keep you in my prayers.
It seems each patient responds differently. My experience with my first GK was very successful - immediate relief for 3 years. I then had a second one after Meds failed to control the pain, which was unsuccessful. I then had MVD. 6 months of less pain which has escalated to fullblown TN. I’m now back on meds. I’ve been told that the second GK effected the outcome of the MVD. But. As I said before- each case is unique in its response to treatment. Good luck and feel better…
I had gamma knife surgery April 2012 and the pain was worse after ... it is different for everyone ... you came to a great group for support/information ... best wishes
I am in Tucson Arizona - Dr. Sanan did my MVD surgery at Tucson Medical Center and I have my life back!! Dr. Teeple is the neurologists (4th one I saw over 18 months) and he read the MRI properly. The MRI report evaluation indicated the trigeminal nerve was not compromised. It never occurred to me to get another opinion of the report. Tegretol was working for me until I had a relapse in June 2013 (was on the drug for 16 months). I was thinking I was not a candidate for surgery because of the MRI evaluation. Dr. Teeple suggested to me to see a surgeon, of which I replied, "there is nothing wrong with the nerve." He said, "Well, let's take a good look at your MRI". There is was, an artery laying on top of the nerve!
Met Dr. Sanan October 1st, surgery was October 21st and I have never looked back!! Surgery total cost is about 65k of which insurance takes care of about 85%, the remaining monies owed, you can work out payment plans. $100 a month.
If you do not get the TN under control, you will have a difficult time finding a job!
You ask, how do you know if surgery is the answer......go to a surgeon you trust, they will give you the right advice. There are surgeons out there that are not just filling their calendar with surgeries for the $$$$. They want to help their patients.
The first time I had Gamma Knife it was wonderful... I was almost pain free for 10 years.. Then I went to a nuerosurgeon and I had the Gamma Knife again. it was the worse thing I could have done. He damaged the trigeminal nerve beyond repair . I will have to live with this pain and numbness forever even though I take a lot of medication Lyrica and nuerontin. If you can stay on tegratol it will help during the bad times. I will pray for you.
I found my neurologist on this website. His name is Dr. Daniel Pieper. He has now performed over 1,300 MVD surgeries. His offices are in Royal Oak, MI and Novi, MI. He has a lecture on youtube https://www.youtube.com/watch?v=1RrWUbbyAKk There's a much longer and comprehensive video but I can't locate it right now.
gizmo said:
Hi colliegal, How do you know how experienced a nuero is withTN or ATN? I have called several nuero offices and they will not answer me when I ask how many patienst they have treated with TN. They just say the doctor treats it. I don't even have a definite daignosis on what is wrong with me. Any advice on how to find an experienced nuero would be greatly appreciated. Gizmo
colliegal said:
Dear Domelover,
Please run, don't walk to the best TN neurologist doctor you can find. My nightmare with TN started a year ago but when it came it came on like a bat out of hell. It changed everything about my life until I was started on Tegretol by my family doctor. I did my homework, found a top notch TN doctor and made an appointment with him while I was feeling normal. He gave me all the information I was looking for and warned me about seasonal change being a trigger, he was right! When the Tegretol stopped working I knew I had had enough (TN is a progressive disorder) and opted for MVD surgery. I have never looked back. I have some issues from the surgery that are still in the process of healing but I CAN now talk, smile, laugh, eat, brush my teeth and live a life which I couldn't do before. I know surgery is not for everyone but when TN took over my life, it took everything away from me. I was a shell of a person living in constant pain and fear. I told my family I would rather die on the table then live the way I was. I choose MVD because of the long term success rate, my age and physical condition. The other surgeries usually only last 1 to 3 years and by then I may not have been able to have MVD. I will keep you in my prayers.
I can't say if "everyone" benefits from Gamma Knife (GK) or Cyber Knife (CK). I can tell you this. I was having to continually increase dosage of Tegretol in 1999. In 2000 they did a GK. The worst part was the shots on the head to numb the effect of the tightening of the screws on the head piece. The GK treatment is painless - 0 pain. But fitting the headpiece put a LOT of pressure on the skull. Once it was all attached and the pressure evened out it was ok. They told me the GK treatment would take 8 - 12 months to take full effect. At 8 months I started reducing the Tegretol. At 12 months I was off Teg completely and pain free for 9 years. Then one day WHAM-O. Awful shocking pains returned. So they did a CK in Feb 2010. Afterwards there was a lot of facial numbness, crawling tingling, electric - like sensations in the face. But the BIG awful shocks were again gone. I had to go back on Tegretol. Then later added Lyrica for the neuropathy caused by the CK. But, that was done purposely to, in effect, damage the pain sensor segments of the T-nerve. Later I went to another neuro. She told me (quote) " I'm going to prescribe 1 pill (25mg) of Amitriptylin a day and see if you can get off some of that other stuff". I was previously on 1200 mg of Trileptal, 225 mg Lyrica, and now 25 mg of Amitriptylin (Elavil). I have cut the Trileptal IN HALF. So, I now take 600 Trileptal, 225 Lyrica, and the one pill of Amitriptylin. I feel better now than anytime since I had the CK in 2010. I rarely have a "bad" day anymore. Yes, the numbness is still there but not to the point it was right after CK. I am now far more alert than when I was at 1200 Trileptal. Did the CK work for me ? Yes, it did. It caused some other problems (neuropathy) but that is a far cry from screaming with pain....which was like someone sticking a spark plug wire to my face with the car motor running. It was totally unbearable. So, in my case, yes the CK did work as did the GK 9 years earlier. I'll say now...4 years after the CK was done I feel better than I did right after the CK. The doctors I had favored the GK and CK over MVD because of the invasiveness and brain surgery aspect of MVD. There were times right after the CK I wish they had chosen to do MVD, but they were pretty solid on not doing that. I suppose it all varies from one person to another. They told me MRI did not show any compression -- yet I was having all this TN pain. So, I assume that's why they did GK and CK -- since they could not see a clear cut reason for the TN pain. I've said a lot here in giving my 2 cents worth on question above "Does everyone benefit from a GK"? There are people I talked to on Chat on this site years ago that had really bad effects from the GK. Personally, at some point I didn't care one way or the other what they did if they could just stop the pain. If the radiation of the GK or CK killed me it was sort of like - so be it. I know a lady in church who had TN and she was told to do an MVD. She told me she didn't care if they cut her head off. That's a quote. Her MVD was 100% successful. No after effects. That was 2 yrs ago. I have heard the pain can come back even after an MVD. In fact I know of another lady in a nearby town who had 2 MVDs and was a basketcase. She was still having awful pain. I guess I'm glad I had the GK and CK because I'm doing good as long as I take the meds as directed. Would I rather be off them? Of course. Am I glad I have them available ? You bet. This stuff in my opinion is not an exact science. I think the doctors and surgeons just do the best they can under the given that its such a hard to deal with disorder. I will say this. If after a continued time, a long time, and you aren't seeing at least some good success do not be afraid to get a 2nd opinion from other neuros. That's what I did. And it resulted in a big big turnaround for me.....ONE little pill of Amitriptylin and a reduction in Trileptal has made a world of difference. Oh....one other thing. They prescribed a facial cream which I use occasionally to help out. Its mixed up at a compounding shop. It handles the days when things are a little too much for the level of meds I'm on. They just call it Neuro Gel. It h as a combination of many ingredients. On lesser days I use a facial cream Gallaxia. Its inexpensive and in my case does help the minor stuff. For stronger days I use the Neuro Gel. I might use either of these maybe once every 7 or 8 days or so.