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Showing content with the highest reputation on 05/05/2022 in all areas

  1. Don't see the problem with it myself Music. If it bring more awareness to are condition I'm all for it !!!!!!
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  2. Some food for thought for me. I'm female and I started having migraines, chronic migraines (15+ days a month), and finally, clusters in addition to the migraines when I turned 34. Literally, the migraines started after my birthday and about 2 years in, I started getting clusters. My neurologist who I had been seeing for migraines was very reluctant to dX me as having clusters (female, migraine), but the clockwork 2x a day, 12 hrs apart, sharp icepick, and autonomic features plus the response to verapamil did it. (Edit: I had been screened for hemiplegic, idiopathic, stroke, MS, and carotid artery dissection before finally being dX as clusters.) Previously, I had had migraines before (that's what the doctor said, but when I think about it, he might have been wrong) which had started after a horrible ENT infection. I was 25, then, and I had it on a chronic basis before they just randomly disappeared after about a year. In addition to having clusters, I also have mood disorder (bipolar type II, mostly depressive) and have been treated for excessive daytime sleepiness as well. In both cases, my care team (neurologist, psychiatrist) have implicated circadian rhythm issues as a contributing factor for the headaches (pain and otherwise) and my neurologist implicated the hormonal changes in my body (perimenopause), weather changes (I'm a walking barometer, air quality analyst, and pollen predictor all in one), and histamine as three of the biggest causes for all of my headaches. I can faithfully take any and all useful maintenance or abortive medication, do a low histamine diet, keep my D levels up, try my best to regulate my circadian rhythm... But the hormones. The hormonal factor has made everything headache-related extremely resistant to treatment - triptans and CGRPs included, so yeah, I am and have been screwed.
    1 point
  3. Some notes that might be pertinent to some of this discussion. The predictable recurrence of CH cycles seems to have been greatly exaggerated. In Rozen's 2010 study, "Cluster Headache in the United States," of 1134 people with CH, he reported, "In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin." In that same study, 22% reported having just one attack per day. Regarding the effects of light, there was this interesting thread here a while back about glasses preventing CH: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/?tab=comments#comment-78836 In that same Rozen study, 6% of people reported having a father with CH. Hereditary data are all over the place, but overall, the chances that your daughter will have hereditary CH are very low. A JAMA 2020 report said "Across the 22 large cohort studies, the positive family history rate of cluster headache varied between 0% and 22%, with a median of 8.2%. The largest 5 studies had a positive family history in 18.0% (numerator not provided), 5.1% (40 of 785 cases), 10.0% (numerator not provided), 2.0% (12 of 609 cases), and 11.2% (56 of 500 cases), respectively. https://jamanetwork.com/journals/jamaneurology/article-abstract/2764341#:~:text=Meaning Per this systematic review,as well as environmental factors. [Note that this is family history, which could be anyone in the family. If you limit it to fathers, the percentages are much lower.] Since I have a daughter with CH (but -- for those who don't know -- do not have CH myself), I understand your dread, and I think Bosco' was right about the advantage she would have from your knowledge, in the very unlikely event that she does develop CH.
    1 point
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