trigeminal neuralgia
 

Hello everyone
This is now my second round with TN and it doesn't look like there is much help around the corner. I wasn't sure what was happening the first time I was hit with what felt like a bolt of lightening that dropped me to my knees but it scared the heck out of me and the pain that followed for 10 months was the worst pain imaginable. I suffered for those 10 months because I could not get a doctor to believe me.I went to Mcmasters in Hamilton and had an MRI but was later told by my nuero that I had TMJ which I know I don't. I had bilateral pain but never at the same time, it would switch form one side to the other without warning... I was later put on tegretol and neurotin because I told them I was giving up and I was at that point.I couldn't function any longer, emotionally or psyically.... The drugs were making me sick so after 6 months I slowly weaned off them and was doing great with only the occasional twich of pain and lightening strikes to my face and I was coping well... Two weeks ago I was once again struck with a jolt that dropped me to my knees and the pain has been with me since..I am back on tegretol since Monday and it is helping but will take time to build up to rid me of all the pain.... My problem- why don't they try to find out the cause instead of filing me full of drugs that turn me into what feels like a zombie....is it possible they missed something on the MRI? I've heard that has happened before..Seem they want to mask instead of getting to the bottom of what is causing this.....

I don 't want to live this way because I can't function on these meds and the longer I take them the worse I become..this isn't living and I am starting to feel depressed and how can one not when you are fighting the worst pain imaginable....I don't know what to do but one good thing that happened today was my daughter who finally got me into see her doctor this coming Monday..she's a investigator and gets to the bottom of things, quite different from my present family doctor..hopefully she can help me and thank god I am one stubborn woman or I wouldn't be here today..... sorry abuot my rant but I am feeling down and crappy and exhausted from fighting pain..hopefully this med will build up quickly in my system to give me some relief.....


BorderlineAngel

:grouphug: Hi, Angel! Hang in there. You are not alone. Unfortunately, you are in good company here. So far, I have managed to hold off severe pain. But, I can relate to the zombie effect of the drugs. It IS depressing, I know.

From what I understand, a compression of the TN nerve is the root cause in most cases. There are surgical options, but no guarantees. I think the lack of a promising cure lies in the fact that doctors just don't know enough about the nervous system yet. I hang onto the knowledge that ten years can bring great changes in the medical field. I think that in our lifetime we will see a cure.

It is promising that you will be seeing another doctor on Monday. Let us know how it goes. I hope your meds bring you relief any minute now.

Bluemom

HI Blue

Thanks for your encouraging words.I did have a MRI two yrs ago but the said nothing showed but the fact that tegretol takes my pain away must tell them that there is a nerve problem going on.Please excuse any typos but at tis point I can barely see straight and feel like I'm on a different planet.I don't like not being in control of myself, it's very frustrating and the thought of being on this drug for yrs scares me to death.I can't imagine going through life feeling the effects, it's awful but not as bad as the facial pain. I'll admit there have been days where I just wanted to give up and leave this world because I couldn't deal with the pain any longer but I am one stubborn woman and thats what has kept me plugging along.I just hope there is an end to all of this so I can get back to living my life, thats all I want.
I weaned myself of tegretol and neurontin after being on them for 6 months a few yrs ago and the pain was gone only too come back a few weeks ago and I believe the trigger was the cold air on my face while at the lake on a cold day. I did have twinges of pain during the time I was off the drugs but it wasn't anything I couldn't deal with. I also had three of my molars taken out when there wasn't a problem with them but I could handle the electric shocks any longer...is there an end to all of tis or will I spend my life fighting this paina nd being drugged and feeling like a zombie?

Hi Borderline Angel,
When I had my first MRI, the doctor said that it was 'clear' and showed no impingement of the nerve. Fortunately, the neurologist that did the MRI finally sent me to a neurosurgeon. The NS immediately sent me for a "Thin Slice Fiesta MRI" (I have no idea what the Fiesta means, maybe it's an anagram for something). The thin slice part means that the MRI will take pictures that are much closer together, so, say a regular MRI will take 30 slices - a thin slice will take maybe twice as much. (I hope that I am making sense). So anyway, when they did the thin slice MRI, they found compressions and immediately scheduled me for an MVD. Apparently the compression was 'hiding between the slices' of the normal MRI.
So perhaps this is worth a try.
Best of luck on your journey, and i wish you many no pain days.
Lily

Hi Lily
 

Thanks for replying to my post.I'm not sure if I replied the first time in the proper place on the board.I am in so much pain and my eye sight is very blurry so please be patient if I am screwing this up.I will mention to my doctor about a thin slice MRI...Right now I have break through pain and think I need my meds upped because I am only on 800mg's a day of tegretol and it is not taking the pain away...After the first round of TN I thought I was in the clear.It came and lasted 9 months then went away with only a twinge of pain here and there and I could handle that but it is back with a vengence...it is kicking my butt big time..Some days I just want to give up because I don't know how much more I can handle...good thing I am one stubborn woman.

Borderlineangel

True, it's a good thing to be stubborn with THIS disease. I am so sorry that it is kicking your butt right now, I have to tell you, since the weather moved in 4 days ago, it is kicking mine too!!! What hell this can be sometimes!
sending a hug your way, BA, :hug:
Lily

Thanks for the hugs, the more the better.I had a bad morning and spent most of ti with tears streaming down my face.My poor hubby doesn't know what to do other than listen and be here for me. he is out now buying me soup and yougurt because I find it too painful to eat anything solid. I figured out what brougth this attack on and it was down at Charles daily park where we bring our pups for a walk.It was a colder day and all of a sudden I had ear pain and the next thing you know it was full force face pain and everything went down hill from there.I should of know better than to go out in the cold unprotected but I thought after the first attack in 2008 it was gone forever, boy did I learn a lesson and now am paying the price big time.

By the way I am only on 600mg's per day not 800 like I said in previous post..wow am I screwing this up big time.Amazing what happens when your not in control of your body and mind. Not sure if these side effects are normal, specially the blurry eye sight.Think I will mention this to the doc on Thursday

I feel your pain in every word you have typed.

I was diagnosed, almost immediately, with TN over 5 years ago (3rd branch). I put up with the pain and meds for almost 3 years and I got to the point where I could barely function.

I also thought about whether I could put up with this for the rest of my life - it was debatable. If I had a cup or glass in my hand and I got a jab, I would drop whatever was in my hand and fall to the floor in pain. My family felt my pain, but they really had no idea.

Finally, when I found out I was going to be a grandmother (to the most beautiful blue-eyed, red-head 2 1/2 year old girl), I knew I wouldn't be able to give her "raspberries" on her belly unless I was rid of this incredible pain.

My neurologist sent me to a neurosurgeon and it was decided that we would do the Balloon Compression. That was almost 2 1/2 years ago. I was very fortunate to get in for the operation right away. After day surgery, I woke up pain free. I had to ween myself off the carbamazapene over the next month or so, I had a bit of numbness around the top of my lip, but all that has gone away. I've been pain free ever since.

Recently, I have been getting the odd little 'jolt' in the 2nd branch. Nothing that I can't tolerate right now, without the meds, but for me... the Balloon Compression saved my life. I know it doesn't work for everyone, but there is hope out there!

I'm sending my very good wishes and thoughts your way. Please hang in there. I hope you can get more answers next week.

Warm regards,
Judy

Judy M,
WELCOME! Hope you like it here :)
Lily

Thanks for the encouraging words Judy. I'll hang in and hpe they come up with a solution to my pain.I know there are different things that can be done so hopefully they will find the right one for me.I don't want to spend the rest of my life on these drugs that make me loopy..There are terrible and I find it hard to function but I'm hanging in and being the trooper everyone in my family knows I am...