Trigeminal Neuralgia
Yes - I have trigeminal neuralgia. (T.N.) It was diagnosed in the summer of 2003. I was very, VERY fortunate that my dentist recognized what was happening and sent me to my primary doctor. He could have just started pulling teeth - which has happened to many sufferers of this hellish affliction before a correct diagnosis was made. It is also known as 'tic douloureaux'. One of the doctors I spoke with says it means 'pain of the devil' - but I don't know if that is a true interpretation as I took Latin in school - and not French.
We had no health insurance at the time as both my husband and I were both on unemployment. We had COBRA'd the benefits which (of course) had just run out right before this all happened. Being fortunate to live in America I managed to get my diagnosis and treatment with no insurance at all. The generosity and compassion of my doctor and a neurologist friend of his was how it all worked.
The treatment for this affliction is normally anti seizure meds. Tegretol is the first pick - and I adored Tegretol but had an allergic reaction to it. So Dilantin it became. The cognitive problems caused by taking Dilantin are very frustrating. Loss of memory and whatever that thing is called when you can't remember a simple word usually when you're right in the middle of a sentence. It is hard but the pain - oh the pain - is debilitating. It is hard to describe - like labor but knowing that it won't end happily or possibly even won't ever end. The pain consumes. So the problems with Dilantin are dealt with (and with a grateful heart - I might add)
Anyway - I am putting up a link to the Trigeminal Neuralgia Association. It is a wonderful website with a lot of support and information.
As to the problems with homeschooling while dealing with this abominable affliction I have to say that I am definitely not as organized as I was before. My house is messier because Dilantin makes me feel sort of happy to just sit and not move at all. Of course I do force myself to get up off the couch and I find that once I start moving I'm much better. Overcoming the inertia is very hard. My kids understand that I am battling with the monster and find it quite funny when I screw words up. Such as saying 'clat' instead of 'cat'. Or accidentally calling the dictionary the bible. (Well - it's a big heavy book - you see?) We manage and usually with a happy disposition about it. We get it done even if not beautifully and gracefully all of the time. The flexibility is key. We can do art at 7:00 p.m. if we wish. We can start school at 11:00 a.m., 1:00 p.m., 3:00 p.m. - whatever works for us.
Many people are horrified - You don't have a schedule! We do have a schedule it's just different from most and it's very flexible. For instance the kids bedtime is 9:45, but the older one can read quietly in her bed until 11:00 then it's lights out. The younger one goes right to sleep and is up around 8:30 - 9:00 a.m. The older sleeps until about 10:00 a.m. That's how it goes every day! See? A Schedule!! As far as school goes - a basic plan is there and sometimes we only do part of it but many times we do much more! Everyone in the house has to be able and ready to deal with what needs to be done. Some days it just aint happenin'. Other days we're on fire!
Anyway - I'm thinking about getting gamma knife surgery for the T.N. I'm fixing now to consult several neuro. guys and gals about it. (Yes - we have very good insurance now!) If anyone has any feedback about the gamma knife surgery I would much appreciate it.
Off to beddy bye for me! Sweet dreams!
We had no health insurance at the time as both my husband and I were both on unemployment. We had COBRA'd the benefits which (of course) had just run out right before this all happened. Being fortunate to live in America I managed to get my diagnosis and treatment with no insurance at all. The generosity and compassion of my doctor and a neurologist friend of his was how it all worked.
The treatment for this affliction is normally anti seizure meds. Tegretol is the first pick - and I adored Tegretol but had an allergic reaction to it. So Dilantin it became. The cognitive problems caused by taking Dilantin are very frustrating. Loss of memory and whatever that thing is called when you can't remember a simple word usually when you're right in the middle of a sentence. It is hard but the pain - oh the pain - is debilitating. It is hard to describe - like labor but knowing that it won't end happily or possibly even won't ever end. The pain consumes. So the problems with Dilantin are dealt with (and with a grateful heart - I might add)
Anyway - I am putting up a link to the Trigeminal Neuralgia Association. It is a wonderful website with a lot of support and information.
As to the problems with homeschooling while dealing with this abominable affliction I have to say that I am definitely not as organized as I was before. My house is messier because Dilantin makes me feel sort of happy to just sit and not move at all. Of course I do force myself to get up off the couch and I find that once I start moving I'm much better. Overcoming the inertia is very hard. My kids understand that I am battling with the monster and find it quite funny when I screw words up. Such as saying 'clat' instead of 'cat'. Or accidentally calling the dictionary the bible. (Well - it's a big heavy book - you see?) We manage and usually with a happy disposition about it. We get it done even if not beautifully and gracefully all of the time. The flexibility is key. We can do art at 7:00 p.m. if we wish. We can start school at 11:00 a.m., 1:00 p.m., 3:00 p.m. - whatever works for us.
Many people are horrified - You don't have a schedule! We do have a schedule it's just different from most and it's very flexible. For instance the kids bedtime is 9:45, but the older one can read quietly in her bed until 11:00 then it's lights out. The younger one goes right to sleep and is up around 8:30 - 9:00 a.m. The older sleeps until about 10:00 a.m. That's how it goes every day! See? A Schedule!! As far as school goes - a basic plan is there and sometimes we only do part of it but many times we do much more! Everyone in the house has to be able and ready to deal with what needs to be done. Some days it just aint happenin'. Other days we're on fire!
Anyway - I'm thinking about getting gamma knife surgery for the T.N. I'm fixing now to consult several neuro. guys and gals about it. (Yes - we have very good insurance now!) If anyone has any feedback about the gamma knife surgery I would much appreciate it.
Off to beddy bye for me! Sweet dreams!
posted by Grizzly Mama | 01:35
9 Comments:
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I've had TN since 2001.
I take Cymbalta, Topamax at night.
When I get an attack, I take Imitrex nose spray and get on pure oxygen. The attack goes away quickly. Good Luck!!
GM,
Sorry to hear you have TN. I had my first episode in 91 while driving...hang on!! Mine was caused by compression over time. I worked on the flight deck of an aircraft carrier. I chose a really tight helmet to keep the noise out as i used a radio and could not use ear plugs so my helmet had to be tight. We were deployed for almost nine months. We were home about two weeks and I was driving to work when all hell broke loose. Talk about scared, i had no idea what had happened. Well it has come and gone a few times. This session has been onging since Feb 08. And as the Dr's said it gets worse. I now have a second problem of depression. Normally two tegretol XL tablets do the trick. While I was on antidepressants I was up to 6 per day 1200mg and was still having break through shocks. I've read about the procedure you are considering, let us know if you go through with it. If any other readers have expirenced problems with meds, TN and antidepressants and know something that works I'd be thankful for any info....
I was just diagnosed yesterday after a fearful night of having extremely painful electric jolt-like pain in my face with increasing frequency. I am saddened to hear others have had the same pain. I am also saddened to hear it does not go away in your stories. Kind of scary. Should I cut out coffee or soda or any foods to help with artery size changes?
Thom
I've watched my Mother suffer with TN since 1992. Meds didn't work for her because of the reactions. After two rounds of glycerol injections and a gamma knife treatment, she (we) finally found the courage to have the microvascular decompression surgery. It was a success! I wish it had been her first step instead of one that she tried to avoid. She went to Dr. Jannetta and Dr. Sekula at Allegheny General Hopital in Pittsburgh. It may not be the right answer for everyone, but it's worked for her -and she's 86 years old.
I sympathize your predicament with Trigeminal Neuralgia. I went thru (2) Gamma Knife treatments in downtown Los Angeles back in 1998. The results were just a slight temporary improvement in both instances. I tried acupuncture with no results. My tegretol dosage was increasing as the pain progressed. I was up to 2400mg per day and then I started feeling dizzy from the excessive dosage. I finally decided to go thru with the Micro Vascular decompression surgery. Like the previous post, it was a complete success. I have never had a reocurrence once since the surgery which was about 9 years ago! I had no complications from the surgery. Hope this helps with your search for a cure.
I had my first bout with TN in 1999. I fought it for over a year. Then it went into remission for over 9 years. Unfortunately, it has once again reared its ugly head. The first time I had it, I was in the middle of a divorce. This time my 10 year old granddaughter is fighting Hodgkin’s Lymphoma which is a type of cancer. I'm curious to know if anyone was under great emotional stress when they got their first attack.
I'm on Tegretol which is helping but I have discovered a few simple things that seem to help me so I thought that I would share them. First, I have started using a child's tooth brush. Secondly, my husband read somewhere that mint stimulates the trigeminal nerve so I am now using a non-mint toothpaste. It's hard to find but it is out there. Last but not least, Oragel PM does wonders when you rub it on your gum. As I massage my gum with it, I can feel the pain subsiding. I use it sometime before I eat and before I go to bed. I first started using it when I thought (prayed) that it was a tooth problem. Since it helped then, I continue to use it and it truly does help.
TN is the most painful thing I have ever experienced. Good luck to all of you and I will keep everyone in my prayers!
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