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  • inpain
    So I have chronic pain in my back, the whole thing from the base of my skull to the tip of my tailbone. Very few actual medical problems there though a few but not enough to account for the pain. About a year ago I relized that I also have horrible nerve pain. I had been on neurotin for psychological reasons and ran out, the pain was a 10. So I went back on Neurotin it got bumped up to 1200mg 3 times a day. And about a week ago switched to 150mg of Lyrica 3 times a day. I have only ever been able to dull the nerve pain. Mine is the kind where light touch can hurt. I was diagnosed with MS almost 2 years ago but I think I was just in denial about it as I only recently accepted it as I believe it is the root of my pain. I do have the lesions.

    Last month I had my 1st attack. It starts out amplifying my normal chronic pain from a 6 to a 7, and my brain starts to hurt in the frontal lobe about a 7 or an 8. Three days in my body pain is a solid 10 and my brain is over that number probably a 12. That goes for two days then on day six it is just gone no brain pain and my chronic pain back to where it normally sits. 30 days later the process begins again but this time I am admitted into the hospital. I am given an IV with steroids and dilauded both every 4 hours. Day three a neurologist comes in and tells me it is a migraine. Now I am given my morphine for pain with dilauded for breakthrough. The steroids are being tapered down and toradol is added to the mix. Something stops it from getting worse and it ends. Maybe the toradol maybe the steroids.

    That was the 8th - 10th now three days ago my brain has started to hurt again. Nothing like that attack thing just around a 2 or a 3. But very bothersome. I have searched for this headache I ended up at The International Headache Society website website and systimatically ruled out 17 different headaches and their sub-categories. So it would actually be an unclassified headache at best. I go for a new brain MRI at the end of this month and a lumbar MRI at the begining of next. I am starting to think that I have a new lesion on my spine as my legs hurt me. Worse at night.

    I need to do something more for this nerve pain I am at the end of my rope here. My neurologist wants to start me on Betaseron before the new MRI's. Do you think that this will help? I have been put back on steroids at home by my new family doctor who convinced me that this is MS.
  • bubbadog66
    I've only been diagnosed with RRMS since last Dec neurologist knows that given MY MS as viewed on my three MRI's this past year i've had MS for at least a decade if not two. In the past two plus years my progression has only gotten worse....someone forgot to tell my brain and spine that there is supposed to be a "remission" part to this MS thing i struggle with daily. There is never a day that passes that doesn't fail to remind me that i have MS.

    Enough is enough MY body said a couple few months prior to being diagnosed that forced me into "early retirement" in the middle of a 30 year life and financial plan....grrr. Didn't see that kinda progression coming, especially with all my difficulties being "all in my head" and the like....panic attacks and/or stress & anxiety, well ... DUH ... i got MS, it is ALL in my head (& spine)!!

    Guess all that's left is to be grateful it isn't worse as i attempt to change the things i can.... eventhough those "things" often baffle & elude me due to lack of knowledge and experience....ugh.... who really "plans" for rating the chronic pain on a scale of 1-10, and rating it above a 5 daily as i do my best to keep the 10's away DAILY!
  • alex21
    How beautifully all the feelings have been conveyed through writing.africabusiness
  • inpain
    The reason I say not a migraine is I have 40 years of expierience with them. There was no "Premonition", vomiting, sensitivity to neither light nor sound and no after headache. Nothing in common at all not even the type of painor the area that I always have them. Spot never changes. What I do think it might be is Dysaesthetic extremity pain and Central neuropathic pain attributed to MS. Does anyone have expierience with any of these? Tegetrol (carbamazepine) / Brand Name: Dilantin, Chemical Name: phenytoin / Brand Name: Elavil, Chemical Name: Amitriptyline?
  • abishag
    Oh, thank you very much for sharing your experience here. I will be telling my friends at the site about this as well. They would love to know about this.
  • inpain
    bubbadog66 thank you for your response. It just took me a little bit to figure out I had to respond to my original message to post anything in the thread. You have a very good outlook on this better than me. I find it very uplifting and admirable.
  • maria1
    The brain does not feel pain, so it ahs to be the nerves and muscles around you skull. How tense are you? 
  • inpain
    Thank you Maria I have read that that is correct about the brain, however it sure feels like it feels pain. I do not believe it to be a tension headache or any other of the primary headaches. I think that if a headache it is than it would be a secondary headache caused by MS. If you look up secondary headaches with MS apperantly it is not that unheard of. Though not how I explained it. It is kind of what is consuming me right now so I have been trying to find the what and why of it.
  • maria1
    Re: Pressure headaches ahd Treatment is a post under Symptoms of MS, it has a proccess for eliminating headaches. It works!!!
  • anywhereoutofthisworld
    I was diagnosed in late July of this year after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. I do get headaches ranging in various severity. I don't take anything other then ibuprofen if I take anything or I simply lay down for awhile. I have had bad headaches and not sure I'd call them migraines. I would just address this again with your doctors and tell them whatever you're being given to relieve the pain isn't working on a consistant basis and maybe there's different tests they can even do that haven't been done.