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  • Central Pain Syndrome, Is It?

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    Old 11-11-2008, 08:50 PM   #16
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    Re: Central Pain Syndrome, Is It?


    I generally do not have too many problems with sleep other than it is very hard to fall asleep, and the vibrations, although no more! (yet). Once I do, I do sleep well, I think. The psychiatrist thinks the hallucination,(it only happened once) is just another example of my CNS not working properly. He has advised me to ask my nuerologist for a sleep study with EEG to see about my REM sleep.

    He also gave me the following terms to research that may or may not apply -reticular activating system, narcolepsy, cataplexy, hypnagogic and hypoapompic hallucinations (or states of mind)

    I have already had an at home sleep study ordered by my ENT because of my severly enlarged tongue, he thought it would cause obstuctive sleep apnea, but it doesn't, I think because I sleep on my stomach. I do have a history of sleep walking and possibly sleep terrors (I think that's what he called it).

    So many symptoms, and I know, LYME!

    The mother of the other post, do you want to send her to this thread to see if it helps her? I don't know how to do that.


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    Old 11-12-2008, 07:11 AM   #17
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    Re: Central Pain Syndrome, Is It?

    It's good to hear you don't have too many problems with sleep...I am familiar with the sleep conditons you have referred to but again, I suspect your problems are secondary in nature...that is to say if you are experiencing those sleep conditions, it is caused by the something else. Some people with Lyme have sleep problems, others do not.

    I thought the sleep thread may be of interest to you because of the psychiatric similarities...if you wish, you can "visit" with the mother on the other boards.

    It's very likely I'll be leaving the boards for a I do want to wish you the best in your search and in your health.


    Old 11-29-2008, 03:58 AM   #18
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    Re: Central Pain Syndrome, Is It?

    Hi patrice,

    Me too new,,,,,,,,just joined today.I m here for my father.He suffered
    stroke in July'08 and since Oct'08 he is feeling shooting pain in entire
    right side of body and sometimes in isolated parts of right side.He
    too has same of kind of burning sensation,pricking pain.Our doc
    said its Thalamic synodrome,which is an post stroke pain...

    I suggest you go for brain scan and consult neurosurgeon.

    Hope it works..praying for your speedy recovery...GOD Bless.


    Originally Posted by hpatrice View Post

    I am new here and also new to posting so sorry for the long one but I need help understanding what is happening to me.

    About 2 1/2 years ago, I had a tooth that cracked that required a root canal and crown. Soon after, I started experiencing slight jaw pain in the mornings and a few bad headaches. About 2 months later I was in a very minor rear end accident. Within 15 minutes, I had neck pain around C5/C6. Dr. said whiplash, fine, neck was sore but not too bad.

    About 2 months later, went back to dentist saying tooth was not feeling good, she said tooth was fine but noticed that I was showing severe signs of TMJ, I was having daily headaches and neck still hurt. Went to TMJ doc and started treatment for that. After about 1 year of that with no headache relief, I started seeing a chiropractor while continuing TMJ treatment. Chiropractor did relieve some neck pain but headaches continued. Then went to neuorolgist. He did basically no tests and diagnosed chronic tension headaches and put me on basically the same meds the TMJ Dr. had me try.

    Then May of this year I found a lump in my throat. I was a 4cm thyroid nodule that had to be removed. (benign) During the stress of this, my TMJ, neck pain and headaches increased to the point that I was taking vicoden daily.

    I got married Aug 2 of this year. On Aug 8, I joined the gym to get in shape for our Hawaii honeymoon. (despite my pain I was motivated!)Well, I injured my knee. This is the 4th time in 6 years this has happened, the first time diagnosed as a knee sprain but it took 2 years to recover so for it to happen now, I was pretty devastated. So this time after 4 Dr.'s and 2 MRI's, the new diagnosis was a bulging disk L5/S1. I guess the fact that I could not straighten my leg, move my foot, toes and my whole leg was burning didn't clue them in earlier.

    Since then, things have gone downhill. I went to the chiroprator that I had seen for my neck injury to help with this low back one. Well, that did help the leg but aggrivated the neck pain and also a previous thorassic injury(unknown). Now I have pain radiating into both arms, most severly though into head, I have tremors, muscle twitches, Chills, night sweats, hot flashes, skin sensation changes on face and back, pins and needles in back of head, memory problems, and now, chronic sinusitis and a double ear infection. Also many other neuro problems that keep creeping up every day. They did a brain and c-spine MRI which showed disk bulge C5/C6 and Pavlov cyst C6/C7 but they don't think that is causing any problems. (yeah)

    I have been to so many Dr.'s trying to figure out what is happening to me, many which just look at me funny or tell me to go to a psychiatrist, so I did. He thinks that I have a "post concussion syndrome" however I have only one memory of having a concussion 6 years ago with slurring speech for 6 mo.

    My chiropractor sent me yesterday to a new Dr. who she trusts and she diagnosed me with central pain syndrome. I am not sure this fits and she did not have time to go over with me what this acually means yet so I have been looking online and what I find scares me. I am now on so many meds that I feel like a zombie but without the pain relief. Does anyone out there have experience w/ this? I could use some help sorting this out.

    Thank you for any help!!!!

    Old 11-29-2008, 07:10 AM   #19
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    Re: Central Pain Syndrome, Is It?

    so sorry your dad has to feel this crap too. i have central pain syndrome too,it is also called "posterior thalamic syndrome"(i have this in my signature at the very bottom of my post). it comes as a result of something affecting either the thalamus(i am assuming this is where his stroke was?)or as in my case,the spinothalamic tract inthe spinal cord.

    the best advice i can offer you as far as treating this stinging burning hell is to see an actual pain doc at a good pain clinic(this really is some killer pain as i am sure you have seen). they treat all kinds of pain there and they DO know the best types of meds to try and hit this crap and knock it down. the anti siezure meds are usually the first line of treatment for this. also,the drug lyrica? this was the ONLY actual med that even touched my central pain and my RSD knee as well. unfortunetly i had some side effects from it that made me have to stop it. but that doesn't mean he would. everyone is very different as to how they will respond to any given drug,so it always good to at least give things a try.

    another thing that i rely very heavily upon is the lidocaine patches? these little wonders actually numb an area so you simply do not feel that pain. i place these at the worst spots when this crap really flairs on me(you plce them in the areas that are radiating out the most pain). they DO help alot. if you have any questions about this syndrome,i will try and answer them for you. i really am sorry he has to feel this. marcia
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

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