1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Burning on Head and Spine is driving me crazy

Discussion in 'Peripheral Neuropathy' started by lnester7, Apr 18, 2012.

  1. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    To all,

    The Burning on Head and Spine is driving me crazy! I feel like Acid is pouring out of my skull into the skin inside of head. Is in the top both side front lobe, in the spine is in the neck base but today more pronounced in the middle between the shoulder blades and lower back. Does anybody know how to stop this???

    Thank you,
    7
  2. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    378
    Virginia, USA
    I think an appointment with a neurologist is in order. Better be safe than sorry.
  3. Desdinova

    Desdinova Senior Member

    Messages:
    272
    Likes:
    124
    USA
    Yes I have recurrent bouts of it may last hours, days, weeks or months. 2 months one time nearly took everything from me on many levels.
  4. Googsta

    Googsta Doing Well

    Messages:
    391
    Likes:
    156
    Australia
    Sorry 7,

    I saw my Neuro recently & he prescribed an anti-epileptic which is often used to help nerve pain. A primary care doctor should be able to prescribe you something for nerve related pain whilst you wait to see a Neuro.
    They are usually low dose, but it may interract with other meds you are on so discuss it with them.
  5. Timaca

    Timaca Senior Member

    Messages:
    414
    Likes:
    70
    I used to tie a bag of frozen peas to the top of my head because the pain was so bad. My family nick named me "Pea Brain". I did see 4 neurologists. No one knew what was causing my problems. I do think you should see a neurologist however to rule out anything that they can think of. The pain has lessened, but I do have burning, sparking, crawling nerves all over my body....

    Best, Timaca
    ahimsa likes this.
  6. maryb

    maryb iherb code TAK122

    Messages:
    2,704
    Likes:
    1,681
    UK
    Like timaca I too put frozen packs on my head which does relieve it somewhat. The neurologist I saw didn't even examine me:(, just said I need to go for an MRI scan, he thought it was coming from my back, which I agree it probably is either pressure or inflammation. Please get it checked by a neurologist first though, you need to rule out neuro problems.
    I haven't been well enough to get a scan yet but mine is so much better, the thing thats worked for me has been Japanese acupuncture, very difficult to find a practitioner, they are like gold dust, but what a difference she has made to me.
    Also look at how you sit, we get into bad habits especially with computer use, your neck muscles and back usually suffer most. Hope you find something to help its a nightmare symptom, like most it does seem to wax and wane though.
  7. Jill

    Jill

    Messages:
    51
    Likes:
    52
    Auckland, NZ
    I get this - more now just in the top of spine - base of skull, and down spine and it radiates out to my leg nerves as well. I used to describe it as the brain frying. Like the others I'd recommend Neurontin or Klonopin if you aren't already on them. I know I'v completely overdone when I get this now and feel it is part of the illness that should tell us something .It flares in me when I'm having a flare. I lie with a wheathie bag on my neck and on the lower spine too. It really feels like the meninges of the brain and spine are inflamed. I usedto hate it so much. I really feel for you. To me it feels very viral.
  8. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    113
    as someone said you need to see your doctor if you havent alreayd, i have alot of burning on back of neck and shoulders was told from fibro and nerve damage..it hurts really bad..

    hope you feel better
  9. Sparrow

    Sparrow Senior Member

    Messages:
    662
    Likes:
    758
    Canada
    I call this "brainfire". I find it torturous.

    For me, it comes from trying to think too much, or do too much processing. A long conversation, or too much tv, etc. can trigger it. If I am strict about rationing those kinds of activities, I don't get it. ...Though I seem to be more prone to problems when my physical body is run down too (e.g. too much physical activity).

    I get a lower-grade "fuzzy," uncomfortable, pressured feeling along my spine between the shoulder blades, and up into the front sides of my head as well. This happens without fail when I do too much mentally without enough rest - again, tv, computer, talking, planning, etc. Some days it takes much less than others to trigger it. The only way I know of to get rid of it is to rest and only rest for a while, then avoid those kinds of activities for some extra time for good measure. The worse it is, the longer I need to wait before trying something like that again. Otherwise it just comes right back.

    It's interesting to me that your discomfort is in the same place. Suggests a common issue to me. If you figure out any more about it, please let me know.
  10. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    Thank you All!. I have seen neuro who sees nothing is wrong with me (except 5 small lesions), The cold helped!
    I rested a lot and cold to it and it is manageable now.

    I will ask my Specialist in next appointment, this doesn't happen this bad so often so I hope I can wait til my next appointment.
  11. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    70
    u.s.a.
    lnester--lesions in the mri-of the brain? if so when does that mean something?
  12. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    Well is only 5 of them, and I have had them for 5 years. They have not changed nor Have I gotten any new ones, so he doesn't suspect MS. He says some people just have them.

    I am afraid to end up yet on another prescription if is a symptom i get rarely but at the same time don't want it to be the begging of something that will get worse. This is such a hard disease, so many decisions, one flying solo and so lost!!!!

    FRUSTRATED!!
  13. Googsta

    Googsta Doing Well

    Messages:
    391
    Likes:
    156
    Australia
    I also have lesions Inester. My Neurologist took many months & several MRI's to rule out MS. He does however, beleive something is wrong & wants to continue treating me.

    I have the same problem. I get burning on the right side of my torso, it is indescribable. I also get crawling sensations on the scapl, limbs etc. Like you it comes in waves & unfortunately all the treatments I have been offered require daily use.
    Most of the drugs that are prescribed for these symptoms are low dose & have few side effects so it is possible to have them for a few weeks here & there. Make sure you research the side effects though.

    I think Lyrica works as a single dose? Maybe someone could advise?

    It's just a matter of weighing up the pro's & cons unfortunately.
  14. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    378
    Virginia, USA
    Nothing wrong except 5 small lesions!? WTF! :confused:
  15. Googsta

    Googsta Doing Well

    Messages:
    391
    Likes:
    156
    Australia
    Brain lesions occur in many diseases including M.E

    http://www.cfids.org/archives/2000rr/2000-rr4-article03.asp
    as this article points out, it is the location, size etc of these lesions that Neurologists are interested in. However, they are still learning & so cannot always give a definitive answer as to why some poeple have abnormalities. It is a shame they cannot freely admit this sometimes.

    There is also some argument between Radiologists & Neuros, with claims that Radios over-report abnormalities.
  16. Googsta

    Googsta Doing Well

    Messages:
    391
    Likes:
    156
    Australia
    Hi Inester, any improvement?

    I tried looking for an alternative nerve pain treatment late yesterday, all I could find were capsaicin patches (I hope I spelt that correct). I was a bit past it to really look into it.
    I saw Rich gave you an excellent explanation elsewhere ;), I hope that brought you some comfort.
    I wondered if you have had an MRI of the spinal cord.
    All the best :)
  17. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    nanonug:
    I know crazy right!! I am just so tired of Drs, I am sure if I keep going they will keep trying to test and find out!! I just get upset of how dismissive they are of my complains so I fired them all HAHAHAHAH (EVIL LAUGH)

    :) Just dreaming!!

    To you all: Thank you for the help Burning almost gone. Just rest and ice so far. I think is a new way of PEM because it goes away after laying down for a while, comes back after being upright for long period!! who knows, I bought ALA in the meanwhile.

    7
  18. Mary Jane

    Mary Jane

    Messages:
    20
    Likes:
    4
    Inester,

    Hi. Have you ever had a spinal tap before? Your neuro could determine if you should have one or not. Hope it gets better.
  19. hixxy

    hixxy Woof woof

    Messages:
    724
    Likes:
    106
    Russell Island, Australia

    Indeed. It is very rare to find a doctor that can say "I don't know". Instead of admitting their limitations, they always tend to find some way of blaming the patient.
  20. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    Neuron suggested Tap to rule out MS, which he doesn't think I have so he didn't recommend, I asked him if he could test for virus while in there like perterson do, he say we don't do that :confused:

    I am thinking on going to Neuro, is just that I don't feel them open enough, I would like to see neuro that understands ME, To be honest w you, I cannot start over with a Dr and explain all the crazy symptoms and be subjected to the looks and skepticism. So I am gonna wait to see specialist and see what/who she recommends.

See more popular forum discussions.

Share This Page