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Old 03-22-2017, 01:40 AM #1
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Blush trigeminal neuralgia

The intensity of these pains is mind-blowing to me! So far, I've been given carbamazepine to fight the pain, which does help a lot. However, I've been fighting side effects of the medicine ever since I started taking it just over one month ago. I'm in a bad position.

Should I try to be put onto another medicine (hoping that it helps as well) or just continue to deal with the ongoing side effects? It's bad diarrhea...every day. Miserable.

Does anyone here have any experience with this illness?
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Old 03-22-2017, 02:22 PM #2
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Default Re: trigeminal neuralgia

trigeminal neuralgia

i sometimes get the prick of neuralgia, Shez,,, i don't know how you stand the pain of it being constant~
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Old 03-22-2017, 04:59 PM #3
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Default Re: trigeminal neuralgia

I get some moderate neuralgia with migraines. Yes, it is really painful. I would talk to your pharmacist or doc about the side effect of your med.
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Old 03-26-2017, 05:17 AM #4
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I have not received this diagnosis but it sounds like it's similar to the ice pick headaches I get mainly on my left temple and eye. It's so terribly painful and feels like I'm being stabbed over and over and over through my temple or eye. It's a pain like no other. I have moist heating packs I place over my face and it sometimes helps. I am so sorry you hear you have this constantly....I can't even imagine. What medicine do you take to treat it and how effective is it? Is it a preventative? I hope you figure out the med situation. (((Hugs)))
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Old 03-27-2017, 10:07 PM #5
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Default Re: trigeminal neuralgia

[QUOTE=ElsaMars;5549490What medicine do you take to treat it and how effective is it? Is it a preventative? [/QUOTE]

I take carbamazapine (Tegretol) twice per day. It does help prevent my TN pains from really striking hard. It works very well for me, in that way.
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Old 03-27-2017, 10:19 PM #6
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Quote:
Originally Posted by misscath007 View Post
I get some moderate neuralgia with migraines. Yes, it is really painful. I would talk to your pharmacist or doc about the side effect of your med.
Sorry to hear that you suffer neuralgia with migraines.

After some thought, I recalled these GI issues striking me back in December. That was before my TN was diagnosed and treatment began. *sigh* It didn't last as long back then...but it was around.

I finally get in to see my doctor this Wednesday, thank goodness. I am hoping that I get some answers and catch a slight glimpse of a rainbow.
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Old 03-27-2017, 10:23 PM #7
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((((((Gus))))))

These headaches are hell. Whether they last for seconds, minutes or longer it is still Hell! Thank you very much for being there for me
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Old 03-27-2017, 11:08 PM #8
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Default Re: trigeminal neuralgia

I have "atypical TN." I'm so sorry you have the full-blown thing. I take Tegretol without any obvious side effects. Yes, I hope your doc can help solve the "run" problem.
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Old 04-17-2017, 11:28 PM #9
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Thumbs up Re: trigeminal neuralgia

Quote:
Originally Posted by shezbut View Post
Does anyone here have any experience with this illness?
I do, I am 26, I started having ATN (atypical trigeminal neuralgia) 2 and a half years ago. If you haven't heard of it, Atypical sufferers usually have constant crushing, aching, and/or burning pain, rather than the sharp shocks. It is still severe, and it NEVER gives you a break.

I have officially tried a variation of every medication for treating TN, because many of them don't work well on atypicals, we get to try more before we find one that works. Technically I just started my last option so I can't give a good review of that one yet.

There are several medication "families" that treat TN.

Carbamazepine (and sister drug Oxcarbamazepine), Gabapentin, and Lamotrigine are all anti-seizure meds that I have tried. The first made me dizzy, the second caused me severe short-term memory loss and did nothing for my particular pain, the last I am still in a trial on but so far I have had no side effects, but also no pain relief, I am waiting to get to a higher dose before I pass judgement.

Lyrica was the only Fibromyalgia med I tried, but I know there are one or two others. I had the most AMAZING pain relief with this one, but within 3 weeks I was dangerously depressed and suicidal as a side effect, so I had to get off it fast. It also caused increased appetite so I gained a little weight, but after 6 months of not eating much and not sleeping that wasn't a bad thing, but it could have been long term.

Nortriptyline and Amitriptyline are old anti-depressants that sometimes dull nerve pain. I am currently on a medium dose of Nortrip. It makes me sleepy, and "hazy" mentally sometimes, but it has been the best relief for the least severe side effects so far. If my new drug works I might transition off it though so I can feel fully awake again. These two tend to work better for Atypical, but are still an option for regular TN patients.

My best advice is to talk to your doc, there are enough options that you shouldn't have to live with a bad side effect until you have tried several of them. Then, you can decide what level of pain, and what side effects you can live with. I had to try a new med every 2-8 weeks until I got on my 5th try, and decided I could live like that. Then it took 8 months to find the best dose of that medication. It may feel overwhelming, but I am sure it will be worth it!


for a lot more advice head over to Livingwithfacepain.org (I think that is the address, searching living with facial pain will get you there) It is a site dedicated mostly to supporting TN patients, and it was a life saver when I started out.

Good luck and I wish you pain-free days!

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Old 08-30-2018, 08:30 AM #10
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Default Re: trigeminal neuralgia

how is everyone on this thread
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