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Old 08-16-2015, 05:34 PM #11
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Quote:
Originally Posted by bradpete3 View Post
Is there a possibility she has atypical trigmenial neuralgia or atypical facial pain?
Hi bradpete,

None of us here are qualified to dx others, we can only give opinions, and TN really does not present like this, nor is it affected by standard meds. I did suggest a possible dx of Neuropathic Facial Pain, often permanent, coming in many forms, as I have below my TN.

Whatever the name, facial pains are amongst the worst we can suffer.

Dave.
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Old 08-16-2015, 11:32 PM #12
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There are a lot of similarities to what happened to this original poster and the type of pain she describes and what I have. I don't even concern myself with my dx anymore, although it is a facial neuralgia of some sort. It happened after a dental procedure. I had no pain prior to the procedure.

After three years, there is at least some improvement.

I am on five medications. Three in my compounded cream and two tablets by mouth.

It is by far the most horrible pain I've ever had. It might be minor improvement, but I am thrilled. And i seem to have more control of this pain of late. Knock on wood and throwing salt over my shoulders.

Karen Sue...please see a neurologist and if you are not satisfied, see a different doctor. I had to try lots of meds before I got relief. Meds and time have given me much more control of this monster. There is light at the end of the tunnel.
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Old 08-17-2015, 09:28 AM #13
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bump to the top thanks everyone for helping eachother . low pain and PEACEBMW
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Old 08-17-2015, 12:50 PM #14
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Exactly, Vowel Lady, what's in a name here? TN, ON, NFP - all are torture on an industrial scale.

I forget your meds, are you on an anti-convulsant? Topiramate for my Cluster Headaches help my face 25%.

Dave.
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Old 08-17-2015, 10:07 PM #15
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English Dave...well, maybe I should say I'm on six meds.
I was already on Topamax for migraines when my facial nerve pain happened. But I only take 50 mgs. I never felt the Topamax helped me much.

In my compounded cream is: Gabapentin, Lidocaine and Capsaicin

By tablet, I take Baclofen and Desipramine. Desipramine is like Elavil.

So....something like five (or six) meds! I think the cream helps me a lot, as well as the Baclofen. They all do, really. I'm blessed to have found a good mixture for myself.

That first year after it happened...OMG!!!!!!!!!!!!!!! I so appreciate Burntmarshmallow and all those who helped me. Freakin hell.

After three years and this routine, I'm feeling better and have more control.
I still have unexplained crazy pain. For example, we went on a tour in a trolley car and I had a horrid episode and thought I would die. Out of freakin no where. I don't do trolley cars anymore.

If I forget my meds...I'm in trouble. If I sleep on my right side....trouble. I am very careful and NEVER forget my meds anymore.

I also now have a Occipital Neuralgia. I have a bad spot on my upper back and some pain going into my shoulders. I put a little cream there too.

I feel fortunate that these meds are helping me.

Don't give up!
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Old 08-18-2015, 04:54 AM #16
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Hi Vowel Lady,

Topamax - Topiramate - is my med, too, and from the increase in dose/decrease in pain side effects I had at the beginning of the year, I know it works. But then, I am on 2x 100mg a day.

I cannot use creams, I used to use capsaicin and Voltarol cream on my neck, but it made me nauseated.

It is strange the things that trigger attacks, it must have been the rattling of the Trolley Car that caused it. You are right to avoid them now.

Keep on with the regimen that works, hope for respite.

Dave.
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