Raynauds Phenomena, and Trigeminal neuralgia

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Raynauds Phenomena, and Trigeminal neuralgia

Postby Roseofsharon » Fri Nov 11, 2011 5:50 pm

Whatever next? In the the last few months I have been diagnosed with Migraine variants, Raynaud's disease and now Trigeminal Neuralgia. I really do not not know what else is going to come up. It's like in the last year everything wants to hit the fan! I would be very interested if anyone has any way of ealing with these three things, because I'm at the end of my tether with it all. Last night I was crying with the pain, it got so bad (Something that's unusual for me as I can deal with most pain.)
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Raynauds Phenomena, and Trigeminal neuralgia

Postby Bobbi08 » Fri Nov 11, 2011 7:00 pm

Hi, sending you soft hugs. I too have TN, and it was the most god awful pain I have experienced.. So I know what you are feeling.

Just to give you some hope, mine is under control by taking Tegretol 600mg which is a godsend works really well. If I run out then it starts to creep back so have to keep on top of it.

Also, I take 400mg at night and it's the best nights sleep I get!! So 200 mg during the day 400mg at night.

BUT that works for me and I don't take any other meds at night except my lupus meds.

Just hope you find some relief soon, something warm on the face helps as well xxx
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Re: Raynauds Phenomena, and Trigeminal neuralgia

Postby Roseofsharon » Fri Nov 11, 2011 8:09 pm

Thanks Bobbi08. I have only just been put on Tegretol 100Mg twice a day, so I'm hoping that it works. I must admit I've only had one dose earlier today so far, but the pain is not as bad tonight as it was the last couple of nights. If it works then I'll be happy, despite being on so many different meds that it's just one more on the list. I have tried putting something warm on the face, and to be honest it didn't help me at all. Oh well. That's life really. I'm just sick of hospitals and doctors for a while.
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Raynauds Phenomena, and Trigeminal neuralgia

Postby Bobbi08 » Sat Nov 12, 2011 1:40 pm

I know I seem to be at the docs or hospital all the time and trying to remember all the meds is a nightmare.

I started at that dose but had to increase when the pain started again and 600mg works well. I couldn't tolerate Gabapentin as this works with the Tegretol so had to have increases each time. So if you are on Gabapentin as well this may provide some relief for you.

Hope it does big hugs xxx
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Re: Raynauds Phenomena, and Trigeminal neuralgia

Postby Min » Sun Nov 13, 2011 4:30 pm

I have recently developed TN & would be grateful for any advice on coping with it, it's hell - the amitryptiline (SP?)
my GP gave did nothing
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Raynauds Phenomena, and Trigeminal neuralgia

Postby Bobbi08 » Sun Nov 13, 2011 10:42 pm

Hi,

Ami's won't help it, I take Tegretol which is an epilepsy drug but people with TN take it, start off on a small dose and work up until you find the right dose for you, sometimes they combine it with Gabapentin.

I take 600mg which works for me, but I can't run out as if I miss doses it creeps back quite quickly.

I found taking co-codomal and something warm on my affected side until I started taking the Tegretol.

There isn't much relief I am afraid so you really need to get back to the doctors and get proper treatment for it as it is the worst pain ever. I still get flare ups but not pain but burning cheek so I know I am stressed.

It was a miserable few months and felt so depressed, so I know how bad it is, I hope you get some relief soon xxx
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Re: Raynauds Phenomena, and Trigeminal neuralgia

Postby Roseofsharon » Mon Nov 14, 2011 2:58 am

I would second what Bobbi08 has said. I only started on tegretol on friday, but I'm on 50mg of amis at night, and like you they didn't touch my TN. Go back to your GP, and ask if he would try you on tegretol. For me it was the only thing that helped!
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Re: Raynauds Phenomena, and Trigeminal neuralgia

Postby Min » Tue Nov 15, 2011 10:22 pm

thank you Bobbi & Rose :hugs:
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Re: Raynauds Phenomena, and Trigeminal neuralgia

Postby karma » Thu Nov 17, 2011 11:09 pm

amitryptiline worked for me but only when i got up to 50mg (I apparently have atypical TN) the tegretol worked for the pain but interfered with my thyroid meds so i ended up like a total zombie so had to stop it! hope you get some respite soon it really is the worst pain x
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