[Clairemc]

Hi, I'm 25yr old TN sufferer. I was diagnosed in Nov 2008, although I have suffered for over 8yrs prior to diagnosis- having many root canals and teeth removed before they realised what my pain was!!! I have been put on Gabapentin 300mg three times a day and can add in tegretol 200mg 3 times a day when it gets bad. I had an MRI scan in Feb and they said I had some blood vessels quite close to my nerve, but they weren't seen to be pressing on it. I don't want to be on my meds for the rest of my life and wondered if anyone else had a similar diagnosis to mine and has had surgery. I just want to be pain free and drug free as my medicines are already losing their effectiveness to control my twinges etc. Thanks, Claire

[JudyM]

I have had TN for 6 years and was on Tegretol that made me so sleep and dopey...

I spoke with my neurosurgeon and I had a "balloon compression" done over a year ago. Immediately after the surgery, I had no further pain and, having to wean myself off the meds, I've been medication free since then.

There is a 40% chance the pain will come back - If it does, I will go back in and have the surgery done again. They insert a large hollow needle through the outside of your cheek - insert a balloon - inflate the balloon so that the nerve is compressed.

I've been pain free for over a year now. It was a God-send to me...

Take care!
Judy

Originally Posted by Clairemc

Hi, I'm 25yr old TN sufferer. I was diagnosed in Nov 2008, although I have suffered for over 8yrs prior to diagnosis- having many root canals and teeth removed before they realised what my pain was!!! I have been put on Gabapentin 300mg three times a day and can add in tegretol 200mg 3 times a day when it gets bad. I had an MRI scan in Feb and they said I had some blood vessels quite close to my nerve, but they weren't seen to be pressing on it. I don't want to be on my meds for the rest of my life and wondered if anyone else had a similar diagnosis to mine and has had surgery. I just want to be pain free and drug free as my medicines are already losing their effectiveness to control my twinges etc. Thanks, Claire

[Burntmarshmallow]

Hi Clair
There are lots of others who have become pain free and med free from different surgeries.
Has your Doctor mentioned any surgeries that may help you like balloon or gamma or m.v.d. ? Any of those may be the answer for you as those have helped others.
Everyone is different and what helps one may not help the next one. Most time a doctor will try a different combo of meds and another and if nothing works they stat looking into surgeries that may help.
there is a few good stories with happy ending here like Nanacats and others if you scroll down the page and read some other threads here.
Keep us posted and know we are all here if you need us and we are wishing the best for you .
PEACE
BMW

[curvycarly]

hi claire,
i have also just been diagnosed with TN and am on gabapentin, thankfully for me the gabapentin as working and if the pain starts to get strong i have co-codamol with it aswell.when ive been researching into TN i have also considered going straight for the surgery.im 22 and ive read most people who get it dont get it till over 50,so getting it so young like yourself i dont like the thought of being on meds for years to come! i just want to try and get my life back to normal.it would be interesting to know whether you choose to go for surgery so please keep us updated.
take care and hope your ok
carly

[thedspeth]

Originally Posted by Clairemc

Hi, I'm 25yr old TN sufferer. I was diagnosed in Nov 2008, although I have suffered for over 8yrs prior to diagnosis- having many root canals and teeth removed before they realised what my pain was!!! I have been put on Gabapentin 300mg three times a day and can add in tegretol 200mg 3 times a day when it gets bad. I had an MRI scan in Feb and they said I had some blood vessels quite close to my nerve, but they weren't seen to be pressing on it. I don't want to be on my meds for the rest of my life and wondered if anyone else had a similar diagnosis to mine and has had surgery. I just want to be pain free and drug free as my medicines are already losing their effectiveness to control my twinges etc. Thanks, Claire

Hi CC.

I'm now 42 and suffered with TN since 2002. Over the years as the pain progressively worsened, I tried everything. I tried diets, herbal remedies, acupressure, acupuncture, chiropractics, and then on to the meds, Tegretol and ramped up all the way to 1600mg per day. Once the meds quick working I had reltively few choices as I wanted a permanent fix.

On September of 2008, I had a gamma knife procedure performed. Unfortunately, it only gave me about 60 pain-free days after the it took affect. I recently (4/3/09) had the final procedure done; MVD surgery. Yes, it was scary. Yes, it was painful for a few days. I woke up from surgery having NO pain strikes at all and haven't had any since. It feels quite miraculous!

I was like you in not wanting to spend the rest of my life on drugs. Tegretol is extremely hard on your liver not to mention fatique, muscle soreness, bad short-term memory and so on. I know there are several other options other than the MVD surgery like the 'balloon compression' etc. If my surgeon had read my MRI back in '06, I would have opted for the MVD back then and saved myself thousands of dollars on other temporary treatments and tons of suffering.

My advice is to get a 'kickass' neuro surgeon (like mine) to read your MRI; not your primary doc or even a nuerologist. Only have a seasoned neuro surgeon read your MRI. They will help determine whether you are wasting time and money on useless remedies. I know this from my own experience and will gladly give you doctor's information if you would like.

Best of luck and I hope your pain is manageable.
Todd

[Clairemc]

Thanks for all your best wishes and support everyone, it's really good to talk to people that actually understand! I'm having a bad patch at the minute so I really appreciate it. My appt with my neuro surgeon is next mon, it can't come quick enough. I will definately come back and let you know how it went. Thanks again, Claire

[_Jen]

Claire & Carly,

I understand how you feel

I'm 21, I've had TN for last 4 1/2 years. Everyone tolarates meds and surgery differently. My opinion would be to go for surgery because you're young! I have had 2 cryosurgeries, 1 lot of glycerol injections and had an MVD in feb 08. My pain is re-occurring and I haven't yet had any luck with meds or surgery. I'm on the waiting list for a balloon compression and if there is not luck then I'll have a repeat MVD.

I had very bad reactions to tegretol, lamotrigine and baclofen. I currently take 4000mg Neurtontin & 400mg Epilim daily. You may find a med that works for you however it is often a matter of trial and error, there are the risks of side effects and it may not even help at all.

There are also plenty of alternative therapies that you may find help e.g- accupuncture, visitng a naturopath or chyropractor, homeopathy, physical therapy, cranio-sacral massage. Some of these are helpful however most of them involve facial contact so you need to weigh up the pros and cons.

Have you got a copy of striking back???

I hope you find relief soon, please let us know how you get on

Jen

[Jesus]

Originally Posted by Clairemc

Hi, I'm 25yr old TN sufferer. I was diagnosed in Nov 2008, although I have suffered for over 8yrs prior to diagnosis- having many root canals and teeth removed before they realised what my pain was!!! I have been put on Gabapentin 300mg three times a day and can add in tegretol 200mg 3 times a day when it gets bad. I had an MRI scan in Feb and they said I had some blood vessels quite close to my nerve, but they weren't seen to be pressing on it. I don't want to be on my meds for the rest of my life and wondered if anyone else had a similar diagnosis to mine and has had surgery. I just want to be pain free and drug free as my medicines are already losing their effectiveness to control my twinges etc. Thanks, Claire

Hi Claire,
I am 50 years old and have trigeminal neuralgia and want to help you. Please know and trust everything I tell you it is the truth. You are young and you can feel better without meds and surgery I do it everyday. It isn't easy you have to be a very strong person with strong faith and you will live every day life the best you can. There will be days you want to give up but by faith you will make it to the next. I was on meds for a short time and didn't want to live like that they make you sick and have allot of side effects. I have learned with much research that the meds do not work. (MVD) Micro Vascular Decompression I had and trust me you do not want this surgery it doesn't work and leaves you with very strong headaches from I believe the plate they use in your head. Also 5% can get a burn in your face which I have it never goes away it adds more to bare it's like a fire ball on your cheek. It is also a very high risk surgery I did it because like you I wanted to get off the meds and be normal again. I am a very strong willed person I try to walk 2 miles a day, take GOOD vitamins, try to eat healthy, do not smoke,get plenty of rest very important to help bare pain, and most important rely on God everyday for strength to be able to get up everyday and keep my mind in a positive state to endure everyday life. It is not easy there will be days you want to give up but keep praying and stay positive be strong in this area of your life! You will make it through the day it is much better than taking meds that are not good for you. It would be different if the meds were making you better but there not there is no cure at this point. I would rather live my life with my mind and body not messed up from all the meds and be a normal mother and wife to my family. This is my choice and it isn't for everyone most people take the easy way and just give into the meds then they become weak the longer they are on them and can't find strength to get off them. You have to be your own doctor somewhat and not do everything they tell you it is your life. The doctors do not really know the pain you feel only you do. Please let me know if any of this was helpful to you.
May God Bless you, Rosanne

[NanaCat]

Hello Claire.

I am sorry you are in pain. I 'get it' about not wanting the drugs forever, yet wanting the pain to be gone.

My MRI was normal, as was the 2nd one which was done with 'thin slice' technology (which apparently catches stuff the normal MRI doesn't).

I had extremely atypical symptoms. the neurosurgeon wasn't overly optimistic that the MVD would work, but he said to go for that one first as it gave us the best chance.

MVD was January 20, 2009. I now have no pain. No drugs. No more icepacks on my face, and scarves wrapped around my head. LIFE IS GOOD.

I hope you find your solution. There are many here with good advice and experiences. Trust your gut. And buy Striking Back (best $$ I ever spent).

Best wishes for a soon to be pain free existence.

CAT