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The words sound like they are coming out of my mouth!

Posted , 3 users are following.

Rocketman
Rocketman

I am so relieved to find that I am not alone in this horrible pain and more. Don't get me wrong, I wouldn't wish this pain on my worst enemy! Migraines day in and night.

When I say in the dark...it is my house I am talking about. Keeps me most comfortable...and, odors can make me so sick! Smoke, perfome, some foods cooking...list goes on and on. My "head-banging" has been ever presant off and on for about 5 years....was much more when I was in menopause. Dizziness is frequent which brings me much nausea! I have had every test, MRI's,  Cat scans, even for meiner's disease. I do have constant ringing in my (R) ear. Can't tollerate flouresent lights and the waves they seem to put out, seems like I can feel it surging through my body. My life is all around what I can tolerate, which isn't much. I used to be so very social! I am married, my best friend, my husband is much support, but, some days things get to him too. I have tried dropping foods like cheeses, caffiene does not work! I can not tolerate migraine meds side effects are too much! Tried topomax, depakote(still take this)...percocet seems to help, but, not rid me of pain totally...All I do is take one day at a time...planning is out for me...lost some friends over this....do they believe me....well sometimes I question myself! I wonder if I am going crazy!

I will pray for us all....God Speed to all of you!exclaim

0 likes, 3 replies

3 Replies

  • margo19504
    margo19504 Rocketman

    Posted

    Dear rocketman,

    Just a short note (because I have water ingress problems that need solving) but  just to let you know your  symptoms are identical to mine and I have suffered with this for 24 years since waking up in an Australian hospital after brain tumour surgery. I also get aura and paralysi down my left side. when I get a H.M. attack.  I suffered alone for 20 years, working  out my triggers by trial and error. I cannot tolerate any medicine  except asprin but  recently UK doctors suggested B2, Magnesium and CoQ10 in high doses after having an attack flying to and from Europe (through 8 time zones). I have drastically changed my diet and lifestyle, but now live quite well within my H.M. boundaries. My 4 kids , who were small at the time , learnt what to do if I had an attack, and it was just part of their life.

    It has made them more sensitive, independent and no problem is too large to solve. On the other hand, my ex-husband  thought I was somehow making it all up because the battery of tests  revealed no stoke and expert opinions could not name it.  You can live "better" but it is hard work changing......... I have had 20 years practice.  I feel quite strange writing to "rocket man " about something so  deeply personal but I feel deeply for you  and I know the anguish and the thoughts  of "craziness" and despair you are going through...... I went through all of those.

    I'll help in any way I can. Margo

     

  • lorraine27735
    lorraine27735 Rocketman

    Posted

    I am at my witsend all the doctors nurologist think i am mad and say lose weight because i cannot handle appointments on a bad day or what i am describing is not present when i do see them they do not seem to understand in the slightest. when i go into a shop the fluresant light practically paralise me people think i am having a stroke. the headaches i get with the diziness and the immobility as well as the flutuating visual problems is a night mare but who do i have to see to get proper diaganosis this has been going on for 5 years I also have fibromyalgia and chronic fatigue. 
    • margo19504
      margo19504 lorraine27735

      Posted

      Hi Lorraine, If you know that fluorescent  lights are triggers, don't go  there.  If you have to, get yourself  properly protected.  Wear a hat with a huge brim and very dark glasses. With this condition you have to change your lifestyle.... start by owning your own health.
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