[anon1028]

doesn't make sense. thalamic stroke which caused post stroke pain that was lousy, but bearable.
Then accidental precipitated withdrawal was awful that night but is only supposed to be only be one night of suffering. (wasn't an addict, doctor made a mistake in meds)
why did it set off such a terrible series of events? seven years of burning terrible pain in head neck spine arms shoulders tailbone and now outside of legs. don't know who to see or what to do anymore.
no one believes how bad it is and no help is on the way. on Neurontin and Cymbalta which help a little.
same old, just hoping someone new might look and have a suggestion because I don't leave the house anymore, between the dizziness and the pain.
crazy thing, left side of face turned red after prec with and never turned back. and always burns.
have NEVER heard or read of any of this after prec with.

[PamelaJune]

Mark have you checked out the CRPS/RSD Forum? What you describe could very well be RSD and it may be worth while following up on. Big hug, sorry it's so badly stuffed up.

Originally Posted by markneil1212

doesn't make sense. thalamic stroke which caused post stroke pain that was lousy, but bearable.
Then accidental precipitated withdrawal was awful that night but is only supposed to be only be one night of suffering. (wasn't an addict, doctor made a mistake in meds)
why did it set off such a terrible series of events? seven years of burning terrible pain in head neck spine arms shoulders tailbone and now outside of legs. don't know who to see or what to do anymore.
no one believes how bad it is and no help is on the way. on Neurontin and Cymbalta which help a little.
same old, just hoping someone new might look and have a suggestion because I don't leave the house anymore, between the dizziness and the pain.
crazy thing, left side of face turned red after prec with and never turned back. and always burns.
have NEVER heard or read of any of this after prec with.

[Diandra]

hey Mark,
I did not know what thalamic stroke was so looked it up and found this q&a and thought it may interest you:

http://www.caring.com/questions/post-stroke-symptoms

Also, I think I have mentioned in the past, Elavil aka amitriptiline works for my bad neuro pain. I have very weird neuro pain from untreated Lyme Disease and at this point there is no fixing it. Some days I can do quite a bit but when it flares up, I'm kind of a mess. I take Elavil to tamp down the head/neck pain when nothing else is working but it does render me mentally spaced out but it does help the pain.
I also take Esgic which is
Butalbital/Acetaminophen/Caffeine or sometimes the imitrex for what we rather loosely call migraines.

I sometimes finds docs amusing in their need to label what you have when so often the pain is often inexplicable or has multiple sources. I know they have to code it for insurance but I am blessed with a pain doc who just gets it. He trusts me enough to load me up with all the ammo I need and knows, I know what will work for my current pain.

Am I making sense? I feel like I am blabbering.Sorry Mark....I just feel for you. Trying to think of something that will work for you. Bring in NY I would imagine you have a host of really good pain specialists at your disposable or does insurance make things difficult?

Thinking of you, Diandra

Originally Posted by markneil1212

doesn't make sense. thalamic stroke which caused post stroke pain that was lousy, but bearable.
Then accidental precipitated withdrawal was awful that night but is only supposed to be only be one night of suffering. (wasn't an addict, doctor made a mistake in meds)
why did it set off such a terrible series of events? seven years of burning terrible pain in head neck spine arms shoulders tailbone and now outside of legs. don't know who to see or what to do anymore.
no one believes how bad it is and no help is on the way. on Neurontin and Cymbalta which help a little.
same old, just hoping someone new might look and have a suggestion because I don't leave the house anymore, between the dizziness and the pain.
crazy thing, left side of face turned red after prec with and never turned back. and always burns.
have NEVER heard or read of any of this after prec with.

[anon1028]

Pamelajune and Diandra thanks
Pamela..the skin does not burn, the actual spine feels like its burning, or something, cant figure out the word for it.
Diandra, I will ask about that medication as I have read it several times helping people.
the pain doctor In new York is the one who gave me the really bad combo and got me more sick. but I do know very good doctors now and have to see them again.
I am beginning to accept at some level that this pain is permanent barring some great discovery.
untreated lyme disease symptoms sound close to the things that bother me the most. I guess it's all central nervous system damage.
I guess we must keep moving forward trying to be as comfortable as possible.

[Strhuntrss]

Originally Posted by markneil1212

doesn't make sense. thalamic stroke which caused post stroke pain that was lousy, but bearable.
Then accidental precipitated withdrawal was awful that night but is only supposed to be only be one night of suffering. (wasn't an addict, doctor made a mistake in meds)
why did it set off such a terrible series of events? seven years of burning terrible pain in head neck spine arms shoulders tailbone and now outside of legs. don't know who to see or what to do anymore.
no one believes how bad it is and no help is on the way. on Neurontin and Cymbalta which help a little.
same old, just hoping someone new might look and have a suggestion because I don't leave the house anymore, between the dizziness and the pain.
crazy thing, left side of face turned red after prec with and never turned back. and always burns.
have NEVER heard or read of any of this after prec with.

Hi Mark,

Sorry to hear that you are in discomfort. Praying for relief so your body can heal.

Have you ever thought of Chiropractic? Especially Chiropractor's that deal with the neck and cervical spine?

I had a stroke of my right eye. Optic neuritis (swollen optic nerve) that left my eye with deficiency in my periphrial vision and haveperception issues.

While I have been told by my Opthalmologist that I had "ischemic optic neuropathy, the deficit is permanent, the pain in my neck, tingling and numbness in my face is possibly caused by the nerves in my face, hence nerves being pinched by the cervical vertebrae and arthritis in my spine.

Since I have been going to my UCC (upper cervical chiropractor) specialist, my pain and numbness is less than it was 6 months ago. I am optimistic that with time, and with his help to keep the spine aligned, that my body will heal itself.

Hope this helps and if you do decide to try a chiropractor who specializes in upper cervical impingements, let us know how it has helped you.

I never believed in chiropractors. But since I have a good one, I am a big believer of Chiropractic now and they do more for me than my dr's and their pills.

It makes sense, that if you step on a hose full of water, what does it do? It stops the flow and backs up. That is what your spine does when it has nerves being pinched and cutting off the oxygen and blood supply needed to nourish our bodies naturally. Once that pressure is off, things flow natually again.

Give it a try! Can't hurt. It does not hurt at all, the first time I went, I actually felt taller than when I went in. I found that I breathe better too.

Good Luck and God Bless you Mark

[booklover]

Originally Posted by markneil1212

doesn't make sense. thalamic stroke which caused post stroke pain that was lousy, but bearable.
Then accidental precipitated withdrawal was awful that night but is only supposed to be only be one night of suffering. (wasn't an addict, doctor made a mistake in meds)
why did it set off such a terrible series of events? seven years of burning terrible pain in head neck spine arms shoulders tailbone and now outside of legs. don't know who to see or what to do anymore.
no one believes how bad it is and no help is on the way. on Neurontin and Cymbalta which help a little.
same old, just hoping someone new might look and have a suggestion because I don't leave the house anymore, between the dizziness and the pain.
crazy thing, left side of face turned red after prec with and never turned back. and always burns.
have NEVER heard or read of any of this after prec with.

Hi Mark,
Re some meds to ask specialist about.
Agree with Diandra re Amitriptyline as one to consider, also add clonadine and baclofen. Clonadine is a bp medication which affects pain may help burning pain in face. I had 5 degrees diff when specialist measured it. Clonadine keeps it pretty even. Baclofen is a muscle relaxant which works on dorsal horn of spinal cord. Dampens down neural excitability and burning in spinal cord, worth considering if neuropathic med options aren't adequate or in a flare up. Down side fatigue.

good luck, Booklover

[Diandra]

hi booklover, mark, et al.....
I agree about the clonidine. it does tamp down the neuro pain a bit but I found if you don't have high BP, you have to be careful with the dose or it lowers your BP too much. My doc had actually given it to me yrs ago as I withdrew from OxyContin to help deal with withdrawal symptoms but went back on it recently.

I am also finding lorazepam is soothing the really sharp edge of neuropathy.
Also, it helps that awful feeling of anxiety/panic one feels when pain starts to veer out of control. Do you know what I mean? The pain gets so severe you start tremoring, shaking all over. Thankfully that doesn't happen often.

Thanks for Baclofen info. Have heard of it bit never tried it. Any other side effects than fatigue?
Diandra

Originally Posted by booklover

Hi Mark,
Re some meds to ask specialist about.
Agree with Diandra re Amitriptyline as one to consider, also add clonadine and baclofen. Clonadine is a bp medication which affects pain may help burning pain in face. I had 5 degrees diff when specialist measured it. Clonadine keeps it pretty even. Baclofen is a muscle relaxant which works on dorsal horn of spinal cord. Dampens down neural excitability and burning in spinal cord, worth considering if neuropathic med options aren't adequate or in a flare up. Down side fatigue.

good luck, Booklover

[booklover]

Originally Posted by Diandra

hi booklover, mark, et al.....
I agree about the clonidine. it does tamp down the neuro pain a bit but I found if you don't have high BP, you have to be careful with the dose or it lowers your BP too much. My doc had actually given it to me yrs ago as I withdrew from OxyContin to help deal with withdrawal symptoms but went back on it recently.

I am also finding lorazepam is soothing the really sharp edge of neuropathy.
Also, it helps that awful feeling of anxiety/panic one feels when pain starts to veer out of control. Do you know what I mean? The pain gets so severe you start tremoring, shaking all over. Thankfully that doesn't happen often.

Thanks for Baclofen info. Have heard of it bit never tried it. Any other side effects than fatigue?
Diandra

sorry can't remember others haven't used it in a long while. You could try CRPS thread. it's my CRPS specialist that uses it for bad flares iit's not addictive like other muscle relaxants.
booklover