I recently upped my Tegretol dosage (100mg tabs) to 6 pills a day and the other day I was driving and fell asleep and hit another vehicle. I stayed awake late the night before, but the accident occured in the middle of the day around 1 pm. I'm wondering if it's the medicine or what is the reason.

The pain levels I'm feeling are in the 9-10 level range and I'm scared as hell. I need to find another neurologist, but I am just in so much pain and have so much fear right now.


------
Each step makes me regret walking on my feet,
since the lighting shocks on the left side of my face dance to their rhythm.
Each bite makes me wish to starve for life,
Since the pain of starving couldn't compare to the pain of taking a bite.
Each attack while talking makes me embarassed beyond belief,
because I stop amidst a sentence, as I watch the questions fill their mind.
Each day that passes I grow weaker just wish for relief,
because each day I wish to not think before I eat.

When with family or with friends I see their eyes when i'm in pain,
they feel sorry for me, but don't comprehend the pain.
While their lives continue, mine is spent inside my brain,
each second waiting for an end to this excrutiating pain.
Yet with each passing sencond I spend awaiting relief,
another passes with the chance of causing me more grief.

I haven't quite decided which symptom I found worse,
living with the pain, or dealing with the curse.
I feel a burden was thrust upon me, a burden I must bear,
a burden that is successful at tearing me apart from the world.
The pain might linger for a minute,
but the shame of living with this curse can never be lifted.

When I am faced with attacks that never seem to end,
my mind sinks into sadness ... self pity kicks in.

For fearing eating, or brushing your teeth,
or just walking for that matter,
is a challenge for even the strongest wills alive,
but as the realities of responsibilities add in stress,
the pain is amplified.

Tegretol once masked the symptoms I've described,
but after a year, the dosage has multiplied.
Never feeling myself, the medicine was not my choice to take,
but it was the best alternative to answering to my fate.
But as the dosage upped to 600 mg a day,
I missed the drowsiness it caused until one fateful day.
A day I won't forget, a day that will live with me,
the day I fell asleep and my car plowed into the car ahead of me.
I awoke to the impact, my mind was so confused,
my eyes were shut for seconds, my ego was the most bruised.
No deaths occured, or pain that can't be fixed,
but fear is all that's left.
Why did this happen, was it the medicine?
I feel like an uncontrollable mess.

Hugs to you allfor
Welcome to Neuro Talk and our T.N. forum.
Way sorry to hear why your here . Your right this "illness" is scary but dont lose hope.
You can most always get a second view of thing i.e. options medications , treatments etc seeing another Neuro is a good idea . Do you also see a pain management doctor? I would recommend seeing one if its possible.
Have your been on any other medication for trying to "control" the pain?
I am glad you didnt get injured in the accident!! It could very well have been the meds and upping the dose. You need to let yourself adjust and see how body reacts to the increase. Just like when you start a new medication. or add a medication. I wouldnt drive .
Your verse is a treasure THANK YOU so much for sharing that.
Do not lose hope.
There are lots of options out there . I recommend going threw the stickies at the top. You will find lots of info . and also getting the book "Striking Back" it is our T.N "bible".

Can I ask how you got T.N.( if you know how you got it ) ??

Keep me updated on how you are doing and if you need anything I / we are here.
Sending low pain wishes to you.
PEACE
BMW

Hello, Allfor,
This is my first time ever to write on a forum. Maybe you will get this message after the screening process is done.

There is hope. I had TN for 13-1/2 years until microvascular decompression (MVD) this past April. It started out as just a twinge of pain one Fall day in 1995, which I thought was my wisdom tooth. I had started working at a very stressful job about 6 months before this episode. No more pain after that until about 6-8 months later when there was a short attack of about 10 seconds in the same place. Subsequently, I had short attacks every now and then, so I had my wisdom teeth removed in 1996 or 1997. The attacks seemed to improve, and I lost track of timing, but at some point I began having pain again, and thought again it was a tooth. I went to the dentist who was going to put a crown on one of my molars in the same area, but before that was accomplished I had very severe attacks and went back emergently, and the dentist decided to just pull the tooth, since my pain was so acute. But that didn't solve the problem; only made it worse, and I was writhing in pain after the numbness wore off.

That was when he realized I had something more than a tooth problem, and I was diagnosed with TN. My primary care doctor started me on Tegretol, which took care of the pain, but I didn't like the side effects, so went to a pain specialist who started my on Neurontin instead. I did very well on a low dose of that for several years.

My high-stress job just got worse and worse, along with stress of raising teenagers, and loss of sleep due to both, which added to my stress. Consequently, my TN pain came back. About four years ago I sought help for the TN, read a lot of literature since I worked for a neurosurgeon, and came to the conclusion that the MVD would be the way to go--if there was an artery or vein compressing the trigeminal nerve in the brain, then it could be decompressed and patient would end up pain-free (at that time they said for life--but now they say not necessarily), and no side effects such as numbness would happen.

But due to a suggestion from the neurosurgeon that I worked for I went to another neurosurgeon who specialized in balloon compressions who said that the balloon compression was a good way to go initially because it was a less invasive procedure. He said the balloon compression, gamma knife, and MVD were all "interchangable"--that after you had one of the procedures, you could have the same one again if the TN came back, or choose one of the other options, etc. . . He said about 85% of his patients who chose balloon compression did not have side effects such as numbness (which is probably the most severe side effect).

So I thought I should surely be in that 85%, so I agreed to have the balloon compression. When I woke up after the procedure, in the recovery room I moved my jaw and immediately had an attack. It was an outpatient procedure, and after going home I had the worst pain that evening that I had ever had--even the wind blowing across my face caused attacks. Every movement of any kind caused attacks. So I went back on Tegretol and called my surgeon the next day. He begged me to come back and have a second procedure--that he would not charge me for it--so I did after two weeks. Well, that did work pretty well for a year and a half, but then the niggly pains began coming back, and I had to go back on Neurontin, and took small doses for another couple of years. But I had irritating numbness on that side of my face from there on out. It got worse in hot weather, and sometimes itched.

In December of 2008 I had a terrible, severe attack one weekend when I was away from home. I had only taken enough of my Neurontins with me for the weekend, so could not double up, and since I hadn't seen a neurosurgeon for almost a year (since my pain was controlled very well), the neurosurgeon on call would not help by ordering a Rx of a few pills until I could get back home. This time it was like a continuous attack--never let up. It hurt so badly that I could not even speak through my teeth, I could not move my jaw, and could not bear to swallow my saliva. I had to blot the saliva as it seeped out, which hurt to have kleenex against my skin. I truly had the "tic dolorosa (sp?) --mad dog disease!

So I went to see a neurosurgeon in the same group the next day I got back to town (the balloon compression guy had retired) --who specialized in the MVDs. He started me on Tegretol, which in the past I had to take when it got real bad, because Neurontin is good for pain, but not for a LOT of pain, and we got the pain under control.

Then I deliberated with myself for four months to decide if I wanted to go through with the MVD. Finally I did, and that is another whole story, but the short of it is that my pain is gone.

However, due to my former balloon compressions and numbness and itching following that, the neurosurgeon had to manipulate the trigeminal nerve so much that I still have terrible numbness and itching, much worse than before the MVD. (But no pain!). I wish so much that I had just had the MVD first, since in the neurosurgery books it is stated that the MVD is the "gold standard" procedure for TN. I would not have had this numbness and itching most likely AT ALL.

In the balloon compression they go in and damage the nerve so that it will quit having symptoms. That damage is evidently what caused the numbness and itching. In the MVD they get the offending vessel off of the nerve and clear out things in there so that hopefully there will be no more rubbing of veins or arteries against it.

In my case it was a vein lying against it, and it was so tightly against it that they just cut the vein at either end and stripped it out (said it was one I didn't have to have).

The reason that I got on this forum last night was to find out it anyone else had numbness and itching that was driving them crazy? The Neurontin controls it a lot, but one reason I had the MVD was so that I could discontinue Medicines! Yesterday, I decided to just quit taking it and see if the symptoms were all that much worse than when I am on the Neurontin. So far, it is worse, but I'm going to ride it out for a few days and see what happens. When the medication wore off after my MVD, my whole right side of my face and head, including my scalp was very numb. Half my lips, nose, teeth, tongue, one eye and right up the middle of my face is numb. Now it has been six months, and the only part that has let up is the bottom part of my chin and bottom lip. Even half of my nose and half of my tongue are numb, my eyes are numb and itch all the time, and sometimes I cannot sleep at night because just breathing causes my nose to itch terribly!

My recommendation to you is that whenever you decide to have a procedure, consider just having the MVD first. There are many people, however, who say that one of those "minor" procedures took care of their problem with no side effects. I was not one of these lucky ones. But there are many who have their TN come back. It is hard to tell how one given person will respond to a procedure. The neurosurgeons can only go on what we tell them--no way yet, it seems, for them to get this down to a science, since it is mostly subjective.

Another recommendation: Get rid of the stress in your life. I have been under terrible stress until the past year, and I think that is what caused my TN. I would love to help in a research project that studies the relationship of stress to TN.

My neurosurgeon was very good, but saw me only one time (two weeks) after my surgery. I told him about my numbness and itching, etc, but he told me when he left the room that I didn't need to come back to see him. I guess he can't do anything about it, and so what is the use of following up? Does anyone else have this infernal numbness and itching?

I had an MVD that failed also.I was first admitted to the hospital here in my town. I was on a morphine pump for nine days, then transferred to Kansas city.I have no memory of being in the hospital those nine days. My daughter told me much later that I talked to people that were not there and saw ants fly by in little groups.
Directly after my surgery, while I was in ICU, I had a TN pain. I asked about it and was told not to worry about it, that sometimes it takes a few days. I Knew right then that it didn't work. A couple days later I was released and we went home. It didn't take long before the TN pain returned with a vengeance. The lightning jolts continued in the worst way. I lay on an air mattress on the floor. I wouldn't talk, I couldn't eat, and I was scared to death not knowing if this was all there was now for my life. I lost weight, became dehydrated. I wanted to cry, I wanted to scream, but the fear held me back. I had layed on the opposite side of the pain for so long my ear actually had developed a sore. This was truely the darkest days I had ever known. I hated to move and I would wait as long as I could. The neurosurgeon had talked to my husband and suggested a balloon decompression. They put a needle in your cheek into the base of the skull and try to destroy the trigeminal nerve. Over the next two weeks, I had three of these surgeries and to no avail. The hope I had held onto disappeared quickly and turned into despair.
My husband would sit by my side, hold my hand and pray for us to have the courage and strength to continue trying. I felt like I was the only one in the world who had this tormenting pain.
The last option that we knew we had to try was Mayo clinic in Rochester
Minnesota. We headed right for the emergency room at St.Marys hospital,which is a part of Mayo. I was quickly admitted and had two or three nurses and Doctors surrounding me. Two days later I was taken to surgery
again. The neurosurgeon was one of the best in the world. He explained to me that at this time, since everything failed so far that he was going to partially cut the nerve. He opened my head in the same place as before. When I got out of surgery the pain was very intense and had excellerated the pain to new heights. I was taken to the pain unit where I was watched closely. The nurse kept reminding me to breath as the drug I was getting slowed everything down. I didn't care if I breathed or not at this point.
They took me back to surgery again three days later as obviously That surgery had also failed. The Doctor explained before hand that he was going to sever the nerve and it would make that side of my face numb. It was hard for me to comprehend anything at that time. He opened my head in the same place as before. The lightning jolts stopped. I knew that this was the last surgery that could be done.
I spent three weeks at Mayo clinic. The trigeminal pain had ceased to be
but it was replaced by another pain.
You know I couldn't say the word TN.for several years. It had taken so much from me. I simply hated it all and was very bitter. The pain I have now is not a scarey pain like TN. but it is constant. I didn't even know it had a name.
One day I went to the computer and typed in T-r-i-g-e-m-i-n-a-l, almost closing my eyes.Somewhere in there I read about my new pain and it had a name. Anesthesia Delorosa. I found neuro talk and a brand new world opened
up. This is how I met Burntmarshmello and found out she has the same pain
that I have. I'm now writing to others and found a lot of people that are suffering from pain but are so positive. I have learned to let go of my bitterness and found I am not the only person that has TN or TN pain.I truely believe that when you see your Neurosurgeon, he will direct you down your own path with courage and faith. Meanwhile, you have many, many friends
at neuroTalk. You know friends are like stars, you don't always see them, but you know they are there. Everyone has a story.
Truely a believer, D. Bug7
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DoodleBug, I also have had two MVD's at Rochester Mayo. The first was 8/24/08, the second was two months later (exactly even, 10/24/08). There was a classic presentation of blood vessel/nerve for the first, but I did not have any relief. The second they treated a second site, and also 'sectioned' the nerve. (Partially cut through it.) I have numbness on the entire side of my face, but no pain. Occasionally I'll feel a tingling sensation on that side, like the nerve is waking up, but no pain. I'd be interested in knowing who your doctor was, if you'd like to discuss that, please PM me. I was very happy with mine, even if it took two surgeries. I believe he did the best he could for my circumstance.