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Old 03-02-2005, 12:11 PM   #1
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twisten HB User
trigeminal neuralgia

I just got back from the doc and she says I have trigeminal neuralgia. She put me on 100mg of carbamazepine twice a day and by tomorrow to increase it to 200 mg twice a day. Is anyone else on here familiar with this?
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Old 03-02-2005, 02:20 PM   #2
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Re: trigeminal neuralgia

Quote:
Originally Posted by twisten
I just got back from the doc and she says I have trigeminal neuralgia. She put me on 100mg of carbamazepine twice a day and by tomorrow to increase it to 200 mg twice a day. Is anyone else on here familiar with this?
Hi Twisten,
Unfortunately I am familiar with this problem altho I have never had it. It is aka tic douloureux a disorder of the 5th cranial nerve (trigeminal) . This can be a very shocky, painful problem and I am not sure what the treatment is. I wish I didn't have to tell you this. Nerve pain, and hard to expect it...it can seem to be jumping around. Did the Dr. say what caused this?
Sparkles

Last edited by SheSparkles; 03-02-2005 at 02:21 PM.

 
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Old 03-02-2005, 04:01 PM   #3
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Re: trigeminal neuralgia

No, she didn't tell me that. She did say I might always have it and that it may go into remission but then reoccur. I've been doing some research on the net. Most sites say it is one of the most painful conditions to have. Yup, that would be my luck lol. There are some surgeries for it but some go through the skull so no thanks to them.
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Old 03-03-2005, 07:03 AM   #4
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Re: trigeminal neuralgia

Hey Twist - Although I am not familiar with your newest condition, I just wanted to say how sorry I am to hear that you have something else that you have to worry about now. I wish that I had some really good advice for you but unfortunately that isn't the case. Please tell me that this isn't going to put a damper on our trip to Jamaica at the end of the month..... LOL! Anyway, I hope you find a way to manage the pain and keep it at bay. Let us know..... By the way - my doctor changed my meds from the duragesic patch to avinza, I have been on it before and am not really impressed with it. At least I won't have to worry about being in the sun with the patch now. Love - Kimberly

 
Old 03-03-2005, 07:51 AM   #5
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Re: trigeminal neuralgia

Hey Kimberley, thanks for the words of support, they mean a lot. Unfortunately it will put a damper on our trip to Jamaica LOL. The med she put me on I have to be careful about being in the sun. Looks like you'll have more room in your suitcase for clothes now that I won't be fitting in!! This just has me freaked out so bad. These pains are very scary when they hit. They are affecting my vision also, everything is getting blurry on me. Why did your doc put you on that if you didn't have luck with it before? There are lots of other meds that could have been tried. Do you see the doc again before you go?
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Old 03-05-2005, 03:41 PM   #6
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Re: trigeminal neuralgia

Hi twisten,

I was diagnosed with trigeminal neuralgia about six weeks ago now. I also started on 100mg of carbamazepine twice a day and 1000mg of cocodamol every six hours, luckily they started working about a week after i started taking them and i'm now pain free but it is a condition that never goes away and every time it comes back it's worse than the time before. Sorry to have to tell you that but i hope you feel better soon.

Good Luck.
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Old 03-05-2005, 04:28 PM   #7
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Re: trigeminal neuralgia

I have a few questions if you don't mind. I too have those pains, mine is mostly in my ear but in my jaw too. I was told mine was NOT T.N. because I don't fit the frequency of it but the neurologist wanted to do an MRI just in case, to rule out slow grow tumors. THEREFORE......if you have not seen a neurologist and you have not had an MRI I recommend another doctor. ITs important to rule out the tumor thing. Why chance it eh?
Now could you describe for everyone exactly how it occurs and what it feels like to you? You see from what I understand it effects everyone differently. My doc is thinking that scar tissue from a biopsy is causing my pain.

 
Old 03-05-2005, 04:37 PM   #8
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Re: trigeminal neuralgia

Hi KatKat,

This was the first time i had had any pain like this and was suffering for about 2 weeks before being diagnosed and was going between my doctor and my dentist and the only thing they tried was antibiotics because my dentist thought i may be getting an abccess needless to say they done nothing for the pain then the doctor gave me pain killers which worked for about 2 days then the pain got a lot worse and the only way i could describe it was like lightning hitting my top jaw and pain traveling into my ear and the whole left side of my face thats when the doc decided to try the carbamazepine and so far it has worked.

But the pain is not there all the time it just arrives out of the blue and it doesn't build up slowly either it just wacks you thats why i'm never sure if it is away completely.
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Old 03-05-2005, 05:27 PM   #9
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Re: trigeminal neuralgia

The pain you describe is like mine although mine is mostly in my ear. For that reason and also that mine starts with a dull ache that builds and builds....if I cough or touch my ear or pull on my neck or face the lightening pain shoots through me. It feels like a ice pick in the ear, then it all goes away within a few minutes. Sometimes it comes back later that day or maybe not for another 7 months.
I hope with time your meds side effects will not bother you. My doc gave me neurontin since it is fast acting and I woudn't have to take it everyday, only when it acts up.
In the mean time please have the MRI to rule out a tumor as the cause of your TN.
good luck

 
Old 03-05-2005, 05:33 PM   #10
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Re: trigeminal neuralgia

Hi KatKat,
As my pain is now under control my doc will not do the MRI only if the meds did not work and it severly affected my usual everyday activities in saying that just recently started being able to eat properly was on a soft diet for about 6 weeks.

Good Luck
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Old 03-06-2005, 10:27 PM   #11
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Re: trigeminal neuralgia

I do not have it, but my mother (and now my sister) do. I have do a ton of research on it and would be most interested in discussing Micro Vascular Decompression (MVD). IMHO that is the only thing that looks like a real "fix" to me. However, it is brain surgery. Meds have their issue too.

The reason why I would find out about MVD is if the TN progresses you will know if it's a real option. The other thing is if your TN does not go away with age, you will reach a point where doing a surgery like that is too risky in the elderly.

I'm tired tonight - but the treatments seem to break into meds - anti seizure (Neruotin, etc.), pain meds. then cut/deaden the nerve - cutting, electricity, gamma knife, alcohol injections, etc. and surgery MVD.

 
Old 03-07-2005, 03:34 AM   #12
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Re: trigeminal neuralgia

ok when we thought that was what was causing mine pain I thought about the surgery for like two seconds. lol The thought of anyone cutting into my brain is totally out of the question!
To be honest it would have to depend on what the frequency of the pains were and how well the meds worked....also what side effect you had for taking the meds long term. I took Neurontin for more than a year and the longer I took them the less effects it had on me. The other med has worse side effects (long term) but its supposed to work better I think.
god bless and good luck to anyone who suffers from this horrid pain.
How often do they get the pains?

 
Old 03-08-2005, 09:17 AM   #13
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Re: trigeminal neuralgia

I think everyone is different on how often they get the pains. Right now mine have slowed down and I'm only getting a few a day. From what I read though it does progressively become worse. I can't take the meds she put me on for it. The side effects are too bad and I can't function like that. At this point I won't consider any brain surgery either.
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Old 03-08-2005, 10:42 AM   #14
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Re: trigeminal neuralgia

Let me give you some advice about the meds. Start by taking it for one week at bedtime only. If you have to take it more than once a day slowly work up to it. The first time I tried taking Neurontin the side effects turned me away but the nerve pain was so unbarable I tried again, I had to work up to 1800 mgs per day. I started taking 300 each night for a week...then I added 100 in the morning, then 200 in the morning at weekly intervals. Slowly work your self into the right amount so your body accoustoms itself to the drug.
good luck

 
Old 03-12-2005, 06:49 AM   #15
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Re: trigeminal neuralgia

Quote:
Originally Posted by twisten
I think everyone is different on how often they get the pains. Right now mine have slowed down and I'm only getting a few a day. From what I read though it does progressively become worse. I can't take the meds she put me on for it. The side effects are too bad and I can't function like that. At this point I won't consider any brain surgery either.

Twisten,

I was just asking about you. So I'm reading what I've missed and I read THIS! Gosh darn it! (not what I wanted to say) But, poop, I can't believe, one MORE thing for you to deal with. And it sounds painful when it flares up.

And did you say, you weren't taking the meds your doc prescribed you cuz of the side effects? I can understand that. Sometimes the side effects are worse than the condition itself. Is there anything homeopathic you can do for this? I've never heard of it, so it's all new to me. I will look it up on the web though, just to help me understand what you are going through.

And your trip to Jamacia? Cancelled? Well, THAT stinks. Can you still go, just stay under an umbrella? I believe you deserve a vacation. Do you prefer to go to a warmer climate, maybe you could go to Alaska or some place like that. I've heard it's beautiful. I just hate the thought that you plan to "get away" then this pops up. You'll be like me, sit here and wait and just KNOW there have got to be better days to come. There's just got to be!

Again, I'm so sorry. I know what you have already is not a walk in the park, then to add this to the mix, and to know that it's going to be with you for the rest of your life, gotta be frustrating. But I believe you'll handle it. You have a strong spirit. Go and get one of those "punching clowns" that you blow up, and clock it a few times! You know, just to relieve a wee bit of stress! LOL

I agree with you on the brain surgery tho. You may change your mind later, but for now, if you feel uncomfortable with it, then you shouldn't be doing it if you don't have to.

Well, keep us all posted, and I will be keeping you in my thoughts. You are there already, but now I'll just shove some other stuff to the side and make more room for you.

(((((((twisten))))))

smooches,
tk

 
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