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'Brain Pain'

Discussion in 'Pain and Inflammation' started by Camille W, Aug 13, 2012.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    That can get better if you treat it, it is wonderful when it is no problem again. My brain used to feel like breaking glass with any noise at all.
     
  2. Camille W

    Camille W

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    Thanks for the welcome from everyone, as well as the responses! I wasn't expecting quite so many, but I am pleased :)

    General notes:
    As to why the D.O. put me on anti-virals for only a week... he said in his experience, some patients could be on them for up to a month and have the same crash afterward, so if it didn't 'work' after a week, it wasn't really worth pursuing in his estimation. At the time, I was happy with that answer, and didn't push the issue much. However, now that I have continued to stay at the same or worse level of energy, my parents are finally taking a 'whatever it takes' approach to getting my health back on track, even if it is costly.

    Nielk - thank you for the recommendations. I've found heating my neck does sometimes help. Since its summer at the moment, that has been more uncomfortable than anything but as it gets cooler I will try it more. My mamma bought me this pillow that's supposed to be good for neck/back, but I personally find it supportive but uncomfortable, so I only use it about 50% of the time. Maybe being more consistent would help.
    I think I remember reading you or someone else say that before, about it being impossible to feel pain in the brain. Pain in the brain what it *feels* like, not saying actually something *is* clenching my brain. Just to clear that up. Inflammation is my hypothesis, too.

    Shell - I have thought of dark glasses. I wear prescription glasses, so wearing sunglasses over top is a pain, but I might try it some time anyway.

    nanonug - thanks again for mentioning inflammation. More support for my hypothesis. I will check out the thread you mentioned later. Curious to know what a 'mast' cell is/means as well as more information! Oh, and the mono is gone, I am pretty sure; I've had blood tests for mono done several times over the course of the past two years. The antibodies from the IgG blood test are 'slightly elevated' according to the drs, but still normal.

    Sushi - The doctor I am planning to see soon (Dr. Edward Conley in Flint, MI) pursues a more aggressive approach with the antiviral Kutapressin, and since I responded so well to an antiviral treatment before, I am hoping this will also help me. I've looked it up on here before and a number of doctors seem to use it. I am hopeful!

    @Marlene - How funny you should link to Dr. Lerner's PDF! I've read it a few times. I actually almost made an appointment to see him, but I'm going to a different doctor that is a few miles north of him. Some of your other suggestions (gluten-free, milk-free diets) are things I am doing right now as well. Since the headaches and even more so the brain pain come at all times of day (regardless of what, or if, I've been eating) I don't think they are being caused by something I'm eating, but it's a good thought. By the way, I love your name :)

    Dainty - Hi, friend! :) That sounds immensely painful.... In some ways, it does seem similar to the brain pain I've been having. If/when I find a cranial osteopath in this area, I will most certainly see what he/she says about how structural issues with the bones in my neck/head could be contributing to this brain pain. I haven't been to my chiropractor in a few weeks, but I might even ask him next time I see him. (And I will respond to your e-mail later. Possibly after a nap.)

    @Tania - Wow, thanks so much for your reply. It was very helpful. I'm sorry to hear you had the same thing happen during college. It's so frustrating. I've always been a very disciplined person. I even graduated from high school when I was 16 in high hopes of getting college done sooner, but of course that has all changed. I think at this point I will be forced into taking your advice of cutting back on classes because I've simply run out of money and have no way of earning any in order to take the class I need and afford the spring semester (let alone travel across the country and live the life of a college student!).
    And... I think I'm the hare... taking a nap on the side of the race track. =P

    peggy-sue - Whoa, that's amazing! Unfortunately, I've been taking sublingual B-12 since April, and the brain pain didn't even start until a month or two after that. But the brain suffocating, vacuum-sealed, stuck in a pressure cooker is a great analogy that I will have to save and use as an explanation later.

    sally - I expect my cortisol levels will be getting tested soon, so hopefully that will reveal some of the adrenal/stress problems. I know they are there, just no idea how bad.


    Thank you, everyone who has posted. All of your replies have been helpful. This forum truly is amazing :)
     
  3. Marlène

    Marlène Senior Member

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    There was a time I had the same feeling 24/7, even without noise. I used to say my head felt like a breaking crystal ball.
    What did you do to stop it?
     
  4. Sparrow

    Sparrow Senior Member

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    Yes. Absolutely I have that. An ice pack helps a little sometimes, but only to take the edge off. Sorry you're having those limitations. That's been one of the hardest parts of all of this for me, because it robs me of so many activities and so much social contact.

    This is a sign for me that I'm going overboard in doing too many mental activities (reading, watching TV, conversation, computer, etc.). If I manage to limit how much I do those things more, I can prevent it from happening.

    As a side note, once I've triggered the symptoms, it takes very little to set them off again for a while, and I have to do basically no thinking at all to get it to go back to "normal". At first when this was happening to me, I was constantly going over, so didn't even realize that I could get it to go away completely.
     
  5. Marlène

    Marlène Senior Member

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    Camille, thank you for starting this thread (and your compliment). I have daily headache for 35 years now and have never been able to explain what people have written here. Brain pain, breaking glass, suffocating, vacuum packed, ...

    The only thing I have been able to say is that certain sounds like objects falling on the floor, slamming doors, blabla and applause on television, whistle, salsa music, running water, cutlery, shouting people, etc drive me nuts, extremely irritable. It is as if I put my hand on a hot plate, the reaction in my brain is the same. Stop!

    The brain pain is different and always present for 35 years now, a burning sensation. It has become less after two years of GAPS-diet and Topamax 100 mg medication.

    When I was very ill, it felt as if my brain collapsed as a pudding. The worst period were electric shocks in my brain, these started at the back of my skull. I only needed to turn my eyes or think about something, that was horrible. Luckily it only lasted for a few weeks. My brain has never recovered since then.
     
  6. nanonug

    nanonug Senior Member

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    Well, maybe it's not too late to get some Wellbutrin XL and leave the fags alone... :D
     
  7. warriorseekspeace

    warriorseekspeace

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    I have terrible vision problems that now an eye doctor is finally attributing (after I started wondering) to Topomax I've been on for years. FYI. I thought it was a drug from heaven, but alas, bad effects from that one too.
     
  8. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello just wanted to say welcome to the board...i didint read all the responses but looks like you got alot of good info...hope that you find some answers...

    not sure if this is what you are talking about but i get very bad headaches and migranes...and it feels like my head is going to explode it hurts so badly...i get sensitive to light, sounds, movement, cold towels on head neck face and dark room help some...and i take migrane medications also..

    take care and again welcome
     
  9. Crux

    Crux Senior Member

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    Hi Camille W;

    Although adding potassium and magnesium has helped my headaches pretty well, zinc has proven to be the most effective for the migraine types. I would include brain pain as a description of these headaches.
     
  10. lnester7

    lnester7 Seven

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    I get brain burning and Pressure like, when it hurts is a burning, stabbing needles, acid burning type of pain. The CPAP (don't ask why) is helping mine, also Ice but not for long periods of time.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Camille,

    I also take Kutapressin (now called Nexavir). It is not strictly an antiviral (it doesn't directly kill viruses) but it works in a way that targets viruses. However, it is only known to be helpful with certain viruses--EBV, CMV & HHV-6.

    It takes quite a while to notice the difference, needs to be injected at least 3 times a week (according to most doctors) and a few insurance companies will pay for it--it is expensive.

    If you want to know more about it, look for me on chat or start a conversation.

    Best wishes,
    Sushi
     
  12. Camille W

    Camille W

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    Considering trying to get on some kind of migraine medication for it... I'm just still not completely sure it is a migraine. I guess I'll see what the dr says about it. I finally know when my appointment is (August 27th). So hoping for some answers and relief. I've noticed stress is a major trigger and, as Sparrow suggested, I'm trying to limit my mental and otherwise activities to see if that helps, but... it's so hard when you've nothing to do to get off the computer or stop reading.

    @Marlene... I can't even imagine. 35 years..... Oy...... Praying for you.

    Crux - I have been taking those supplements you suggested since January. For some reasons, although I am hopeful they will work eventually, they have only provided a small amount of relief so far.

    Sushi - looking forward to chatting with you :)
     
  13. peggy-sue

    peggy-sue

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    Somebody else I know didn't have any success with B12 for this brain suffocation - but did with NADH.
    NADH can be an awkward one - I did try it, and I turned into a prickly itchy beetroot. Then I read the small print, which warned about this, if the dose is high - the tablets were high dose. :rolleyes:
    You can get non-flush stuff, but it's more expensive.
     
  14. Camille W

    Camille W

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    Hey, peggy-sue, what is considered high dosage? I found it available here in 5 mg to be taken every couple of days.
     
  15. peggy-sue

    peggy-sue

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    I'm fairly sure it was 200mg. I threw it out.
     
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have never heard of NADH made with a doses that high. Usually, 20 is the highest. I used to take half of a 5mg.
     
  17. peggy-sue

    peggy-sue

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  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Oh Peggy Sue, I thought you were talking about that dose of NADH! ha. That was HIGH.:)
     

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