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Re: Need a lifeline
Jan 22, 2011
I too go nuts due to constant nerve pain. It hurts to breathe, eat and walk. My problem stems from a brain malformation called Chairi. I damage to nerves from lack of csf flow to the back of my neck (C1 - C3).

This will get crazy long... disclaimer!

january of last year I started slurring my speech, the world was spinning, I didn't know how to get out of a store I was in - and didn't know where I was at.... plus I couldn't use the left side of my body. They hospitalized me to rule out a stroke, and put in my final report to the insurance company that I did. Since that incident, my husband swears that my pain and issues got worse. That is also about the time I began to take topamax. My pulse consitantly ran in the near 100's for a LOOOONNNGG time (June of this year) - I don't know, A lot of what has happened since this I cannot remember, have blocked out or just don't understand mentally what has happened.

I started seeing a new Neurologist in Feburary... he like the other neurologist pegged it first as severe status migraines. I went thru every imaginable treatment for migraines around. I even had infusions of meds out of the hospital and for 4 days in the hospital. The meds HURT to go in, burning my viens and making them unusable... they did not help the pain. After the LAST thing he could do for the migraines, he determined that it was not migraine realted that I did have nerve damage. Novemeber he did a (think EMG??) the sonogram looking device... on my knees down on both legs. He found several nerves that were not firing. He ran a huge (27 vials) blood panel. He tested me on every thing from Vitamin and Minerals to heavy metal toxin screens. THe only thing that had a problem was my Vitamin D, B6 and iron. Severely deficent in all three. I have started supplements and see him on Monday.

I now (as of October/November) take 2oomg of Lyrica, 400 mg of Lamotrigene, 75 mg of Indomethican, and .25 of a parkinsons med that I cannot remember the name of right now - daily to control pain. These meds have made it more manageble, but due to the risk of liver issues, he does not want to take me higher on any of them. I now have tylenol 3 for major breakthrough pain and can call his office if that doesn't work to get dilad shots or morphine. (he determines when I get there) - Upon all of this, I have sleep apnea and RLS - he thinks these are also caused by the nerve damage.

I can feel your pain, my entire life has been torn upside down by the never ending cycle of pain. I have a friend that has Fibro, she states common symptoms as you with pain and firing and stops then comes back... feels like brusing...

I forgot, do you see a neurologist for pain management? If not, you need to find one... that would help wonders. He narrowed down faster than my PCP could have - or a hospital. I happen to like the one I have now, but did not care for the one I had before. To my surprise he doesn't do a full tickle kill the bottom of your foot workup like the last every time you come in. I asked, he said there was not a point unless I had a progressive diease, otherwise it wouldn't do us any good. (he also has a sense of humor too!!) -

Do you have some sort of support system? I am going to start counseling as soon as I can remember to call to find one. I have the list, which I keep misplacing... I always remember at 4 in the morning when I should be sleeping but can't due to pain. The one thing now that hurts I cannot do half of what I could before.... it's not a "i don't want to" it's I physically no longer can do it. I have to clean house in VERY small bursts... with 4 kids, well.... it almost wants to make me give up on that. I still cannot will myself to let some of the things that make me feel more "independant" but I feel in time this will get the best of me, and I will finally give in.

I know it seems just ONE more day and it will all go away... it hasn't for me, therefore I too have become REALLY despressed I feel inadaquate as a person, as a mom and wife. That is the worse personal let down, I think I can deal more with the pain... such as when I had hope it would go away majicaly in one day... poof!! But now the pain of feeling like a failure is just more than I can handle with pain or not (lucky!! I get both!) . It seems every test that is run they find yet another thing to peg me with. I would like to believe that if I just ignored it, it would go away... that doesn't help at ALL. I have started taking antidepressants to boot now. If you are not currently on one, I would seek out someone who might be able to help you.

The zanax for me (after decompression surgery) didn 't help with the pain, it just made me completly where I couldn't remember. (hospital documentation of my crying in pain... but I do not remember the entire stay. I had zanax at 10 mg every 4-6 or 6-8 hours (once agaiin with the memory!! Swear I am not going to remember how to feed myself by the time this is over... )

Please update to see progress... I know how it feels to be hopeless, pushed aside.... My husband teases me that they will discover a new disease and they will call it the Michelle Disease....

Well, I would put one of those cool animated hugs on here for you... but I cannot remember how at the moment. Sending you word hugs instead. It helps me to focus on the "good things" - hopefully with counseling and antidepressants I will be able to not force my self to think about the good things, they will just flow as before.

I am off to try to sleep... again.

Keep positive....

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