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Rainmaker

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About Rainmaker

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  1. Rainmaker

    My chronic CH are the result of a virus

    I will 'keep that in mind', although I am not sure how I am supposed to do that as I was only trying to help by sharing my personal experience. I think many here would agree that doctors don't know everything there is to know about CH, or vector borne diseases for that matter, and I was certainly not saying that all CH are caused by them as you implied, just that mine were, and on this, you are not qualified to weigh in. So please don't put me down, because as I stated in another post, I came to this site because I am in a very bad place right now and at the end of my rope. Being scolded for sharing and having my personal experience discounted by you isn't helping. I have read several of your other posts and I can tell you are a caring and compassionate person. Just not feeling it rn.
  2. Rainmaker

    Sumatriptan Injection Site (Low BF%)

    Hi CHFather You mentioned that you have a curiosity about Indomethacin so I thought I would weigh in that I took it for awhile with zero results on the headaches. You are correct that you must be careful about damaging the stomach lining however what doctors don't tell you is that the meds to protect your stomach can cause a nasty condition called SIBO. SIBO is an imbalance in the flora of your small intestine that leads to bloating, diarrhea, constipation and other gastric problems, and is very difficult to reverse.
  3. Rainmaker

    Amazon Smiles

    I just switched my Amazon Smile account recipient to be Clusterbusters Inc. Thank you for all you do for us.
  4. Rainmaker

    Emgality

    Here's what I found on this topic. "In controlled studies with EMGALITY up to 6 months (Study 1, Study 2, and Study 3), the incidence of anti-galcanezumabgnlm antibody development was 4.8% (33/688) in patients receiving EMGALITY once monthly (32 out of 33 of whom had in vitro neutralizing activity). With 12 months of treatment in an open-label study, up to 12.5% (16/128) of EMGALITY-treated patients developed" Translation - yes it can stop working but the incidence seems low..at least for the first year. After that, who knows?
  5. Rainmaker

    Emgality

    I have been afraid to try Aimovig because in some people it can make HA's worse. Honestly, I don't think I could endure that. Does anyone know if Emgality can have the same effect? I have been having trouble finding an answer to this and frankly, I believe what I read here among you fine folks more than anything I read anywhere else.
  6. I am writing this in the hope it is helpful for some of you. My headaches, and other symptoms were most definitely caused by a virus. Here goes. I was an exceedingly healthy and active child and teen. At age 15, I became very ill with what we thought at the time was an acute but typical flu-type illness. High fever, aches, chills, weakness, headaches. For a week or so, my mom would wake me up to hydrate me and try to get some broth into me and then I would pass out again. I was the only one in the family who got sick, so not contagious. I grew up in the woods in New Jersey in the middle of mosquito country. The year was 1975. I recently found out there was an outbreak of a particularly dangerous mosquito borne disease in New Jersey in 1975 called Arboviral Encephalitis, aka Eastern Equine Encephalitis, St. Louis Encephalitis, Western Equine Encephalitis, La Crosse Encephalitis and Powassan Encephalitis. "Many people who survive EEE develop residual, long-term, mild to severe neurologic deficits." Coincidentally, this past summer there was another outbreak of this in several US states. Here's more info on it for anyone interested. https://www.nj.gov/health/cd/documents/chapters/eee_ch.pdf The first night of the 'flu' I got a massive headache, like an ice pick behind my right eye (uh huh, yeah, I know right?) and yup, you guessed it, I have gotten them ever since. In my case, I have chronic headaches that occur daily at or around the same time; late afternoon, evening or night. The times are consistent every day but they tend to migrate over periods of months. My right eye tears like mad, my right sinus swells shut, my neck gets stiff, etc. After the acute phase of the flu subsided and my temperature went back to normal (low normal actually), the symptoms never went away. In addition to the daily headaches, I developed massive chronic fatigue, intense brain fog, fibromyalgia, food sensitivities, etc, etc. My life as I had known it ended that day. I had to modify my high school schedule so that I could take the classes I legally needed to graduate in the mornings, be home by noon, crawl into bed, wake up at 7 to eat and do homework and go back to bed. My greatest accomplishments will always be getting a college degree in that condition and raising two healthy, well-adjusted young men (neither of whom get headaches). Many years later I got a dangerous intestinal bacterial infection (C-dificil) that landed me in the hospital for 4 days on massive doses of IV antibiotics. This was a turning point in my life and went a long way to eradicating the fatigue, brain fog and fibromyalgia, but not the headaches. The headaches remained consistent but the other symptoms could be kept largely under control as long as I don't move much or exert myself (I am oversimplifying for the sake of brevity). As I mentioned, I am writing this in the hope it is helpful for some of you. Feel free to reach out if you have questions or if I can help in any way.
  7. Rainmaker

    Diet and Clusters

    https://clusterbusters.org/forums/profile/24003-clustercured/ Did your headaches stay away over time? Can you please update us?
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