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You have to fake it to make it……

My story. I am 56 yr. old. I have had migraines and daily headaches for 47 years.

12 years ago I developed a rare form of migraines. In one weekend of this new migraine I developed tinnitus, hearing loss, diplopia, loss of smell, receptive and expressive language difficulties, balance issues, chronic fatigue and short term memory loss. I had a mini stroke and that caused all the permanent damage. I have had many mini strokes over the 12 years.

I spent a year going to Diamond Headache Clinic and from there they sent me to Mayo Clinic in Rochester. Mayo couldn’t help me, big disappointment! We went to their library and found one paragraph on this particular migraine, which tells me not much research has been done. I eventually went from full time work to part time and then with encouragement from family, on to disability. I was eventually diagnosed with fibromyalgia and I had never even heard of this. It seems one thing leads to others. This past year I started passing out. In February I passed out and broke my left ribs. When we got to the hospital my blood pressure was 80/50. So now we know I have hypotension, low blood pressure. I had all the tests and heart cath that showed admoralties. I’m on 2 more meds for that and it hasn’t raised it too much, so I have to monitor it every day and see a cardiologist every 6 weeks. I was hoping that finding this heart problem and correcting it might solve the migraines, so far it hasn’t. My migraines can get so bad if there was a gun in the house I would use it. This is no way to live day after day.

I live one hour at a time, I can’t plan or commit to thing. I don’t know what to do, yet I do what I can and put on a brave face. My mom has Alzheimer’s and might becoming to live with me. Probably not a good idea in my condition but she will need a nursing home very soon because she is so far gone. What happened to the golden years?????

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Comments

  • karenjacks
    6 years ago

    can’t believe you had headaches for 47 yrs.I’ve had mine for 10 yrs everyday.I also have been to Mayo & they did nothing but run alot of expensive blood & exrays,ct scans.Dr told me it can’t be too bad or I would be dead by now.That was about 4 yrs ago.I also had to go on disability.I just can’t cope with much & have lost the brighter side of life.I’m 58 now & yes,where is the golden yrs?2 yrs after my headaches started,I also got diabetes,fatty liver.Life goes on

  • Dr Whyte
    6 years ago

    By definition, “mini-strokes” (which is a horrible term anyway) don’t cause permanent damage. Where do you live? I can help direct you to the right headache specialist.

  • Maggie
    6 years ago

    I am sorry to hear of how bad it is for you right now. Living hour to hour can be rough. Giving up work is rough too, since often we define ourselves by our jobs. I hope things get better. Perhaps the heart problems are at the root of your issues and resolving them would lead to a better quality of life. Wishing you well.
    Maggie

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