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help...meds needed for POTS migraines

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by charlie1, Feb 14, 2013.

  1. xchocoholic

    xchocoholic Senior Member

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    Florida
    Hi,

    FWIW, I've had 4 whiplash injuries and 1 concussion from landing on my head in 3 feet of water. The immediate pain lasted a few months ? while this area healed but the pain I get in those areas now is triggered by foods, meds like Levafloxin, lifting something too heavy and sleeping the wrong way. All my pain triggered by physically injuring the area now only last a few days. kow Doing laundry nailed me the other day becuase I lifted something too heavy.

    I got fooled into thinking that the constant pain I was in for the first 16 years of my ME/CFS/FM was just from ME/CFS/FM but it was actually from foods or meds I was taking. I only started looking at how foods and drugs affect our bodies in 2005.

    I've been mostly, 99%, of the time pain free since about 2008. I'm assuming that it took my body awhile to detox. I mostly used foods and digestive enzymes during that period. I never could tolerate the supplements used in the methylation program. FWIW. I don't believe the methylation protocal (it's just a theory) is necessary for everyone with CFS since my body detoxed itself while just eating healthy foods. Most of my symptoms vanished by 2008. I've been healthy at rest since then. IMHO, at this point I'm just dealing with OI and the symptoms associated with hypoperfusion. Dr. Peckerman explains this.

    Finding out what's triggering what is a real pita. Trust me, I know ... been there done that. Still doing this ... I just had to give up oranges because the skin is burning my mouth now.

    Bacon and tomatoes trigger my Fibro pain but that doesn't mean they will trigger anyone else's. It's a shame too because I really like bacon and tomatoes. :aghhh:. FWIW tho, I'm eating Classico pizza sauce nowadays and I'm still pain free. KOW

    Dr. Myhill recommends the paleo diet to her PWCs. It's just organic meats, fruits and veggies so it eliminates known toxins and most food intolerances. You can still have problems with these foods tho. I can't eat poultry without getting sleepy.

    hth ... x
     
  2. meadowlark

    meadowlark Senior Member

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    Hang in there, Charlie. I have had an 8-hour migraine every single day since 1983. How I got this far without shooting my head off I'll never know. A doctor tried me on topomirate in about 2000 without results. Two months ago, I was put on a complex regime of topomirate and novo-methacin by a different doctor and the migraines disappeared completely. Unfortunately, so did my ability to sleep and I felt like I was on speed, then like I was going insane. BUT ... I was genuinely amazed that something out there could deal with that migraine. I had actually forgotten what it felt like not to have one. Now I'm hopeful that they will find something else, on the theory that if it happened once, it can happen twice. (Unfortunately, like most people, I can't afford botox, which has a very high success rate--but also a very high cost for three or four shots in the skull a year). I repeat, hang in there. A solution will come for both of us. (And yes, as IHPA says, magnesium has a great reputation.)
     
  3. charlie1

    charlie1

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    @ meadowlark- thanks for offering encouragement! Since writing that original post, my migraines occur much less often.

    One thing which likely is contributing to pain relief is the 75 mg/day of lyrica . I have gone from 12 migraines in January to 3 migraines in May :) My headache frequency has decreased as well.
    It's hard for me to comment on the success of magnesium for pain relief as I've taken 700mg/day for years (needed for gastoparesis) yet have had lots of pain issues. Perhaps without out it, head, muscle and joint pain would have been even worse. I don't know....

    But I'd say the biggest reason for my migraine relief was that it's been discovered that most of my pain is caused by neck and skull muscles overcompensating for extremely lax ligaments and other soft muscle tissue. I've always been hypermobile but when the worst symptoms of POTS passed, and I was able to start getting out of the house again, my flexibility increased 10 fold. Perhaps that was b/c I had been so inactive for so long that my muscles became useless at attempts to help keep things in place..

    The physiotherapist office is down the street from me and I was able to go there 3x week, now usually 1x wk. Every single time, the PT (a Godsend of a man) found I had dislocated either one of my elbows, shoulders or wrists and had occasionally sprained my ankle. My pelvis is often needing adjustment as well. Most of this misalignment is cause by very little movement, often in my sleep. Regarding the migraines, he showed me that when I dislocate my elbow, the bone (ulna?) jams the wrist out of place as well as affecting my shoulder. (I physically can see in the mirror one arm hang 2"longer than the other one when I've dislocated the elbow. The misalignment pulls my cervical spine out of place although my poor muscles are trying (unsuccessfully) to hold together.. Result is very tight sub-occipital, scalene and trapezius muscles which cause the migraine (and of course elbow/shoulder pain). Each time I see him he pops (horrible sound) things back into place. He only has seen one other patient that dislocates like me.

    With gentle muscle building on the Pilates Reformer at the physio rehab centre, I am SLOWLY training the correct muscles to be recruited when needed instead of a variety of muscle groups trying their darnest to help me out. Kind of like too many unskilled cooks in the kitchen! (too many untrained, weak muscles trying to come to my rescue). Having stronger muscles will not necessarily stop the dislocations but re-training them is helpful. Although it still happens, dislocation is less often now. If I wasn't so fatigued with the POTS, I could exercise (Pilates) more often so I must accept that this is going to be a long road. My scoliosis, motility issues, stretchy skin, dysautonomia and of course the hypermobility all suggest EDS which I am now looking into having diagnosed.

    If hypermobility doesn't affect you, perhaps a trial of lyrica will? I hope you find pain relief soon.
     
    ahimsa and taniaaust1 like this.
  4. meadowlark

    meadowlark Senior Member

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    I will certainly ask about lyrica. I am also sending you a PM in a minute or two.
     
  5. Sea

    Sea Senior Member

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    So glad to hear you've found some answers that has brought you some relief Charlie
     
  6. charlie1

    charlie1

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    Thanks Sea - Here's to hoping the pain relief lasts!
     

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