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Long term sufferer 50 plus years

I always have migraine problems following anesthetics.
I would like to know how many others suffer with Ataxia. I react to anesthetics, and have had migraines constantly since December last year, with Ataxia, which includes head tremors. A suffer hemiplegic migraines and weakness on my left side and nausea ongoing. Also "believe to have had night seizures" many years ago. It takes my memory, ability to read, and interact with others. Prior to this severe non stop episode, had episodes brought on by any exertions, the neurologist I saw at that time felt it wasn't to do with migraine, which I TOTALLY DISAGREE WITH. I have been a chronic migraine sufferer since 8 years old, now 65, with migraines worsening. Simply can't stop this latest onslaught. My day is spent in bed or short periods sitting up. I just missed my daughters wedding which was devastating, to miss such an important event. This isn't living, more like slowly losing my life.
Playing sport as a child, teenager and young adult ALWAYS resulted in migraines, (exertion = migraines) summer months were horrid for migraines, humidity, a real killer, plus certain foods but more importantly ANY CFHEMICAL GAS smells, ALL PERFUMES, petrochemicals, fresh laid asphalt, or heat on asphalt on hot days giving off smell. Household cleaning products, clothes washing products, fly sprays, bathroom deodorisers/cleaners. Having to have so very many anesthetics during my lifetime have reeked havoc causing cluster migraines for months at a time, unable to walk at times at all.
At 65 I'm ready to just give up, I'm a good case for assisted dying. My family history of migraines is extensive, my aunt didn't "outgrow" her until into her 80s, others died first.
Every time my migraines reevolved with new symptoms, I was shocked, as no-one tells you what can happen, slurred speech, unable to stand thinking you're having a stroke.
It is ridiculous over all the years, I am telling neurologists what's happening next, not the other way around.

I'm always fumbling in the dark, with no-one having enough migraine knowledge, or unwilling to share the our knowledge. It is simply just not good enough.
If not for extremely caring GPs who I have sought out, wherever I have lived, I don't know how I would have survived this long.
Neurologists need to lift their game, and start treating complex migraine sufferers with compassion, and if they DON'T know enough about migraines, say so.
Thank you,
Sorry for the rant

  1. , I hear how much you are struggling, how much migraine affects your quality of life. I was sorry to read that you were unable to attend your daughter's wedding. Yes, while there are many great healthcare providers, some leave a lot to be desired, I would agree. In terms of your question about finding others who suffer with Ataxia, I wanted to provide these search results, because there are a few community members and/or articles where Ataxia is mentioned, and I thought it might be a good place to start: Let me know what you think. Warmly, Melanie (team member)

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