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Everything posted by Icantdance

  1. Yes, I do believe that will be my final shot.
  2. I just injected my 4th dose of emgality. No positive impact. Still causes many side effects for me, including fever and achey joints, upset stomach and constipation, a feeling of closed in. Also, increased intensity for hits several days after the shot.
  3. i took the Emgality loading dose a few weeks ago. Got a fever, rash and am experiencing constipation issues and weight gain. Had zero effect positive or negative on my cycle.
  4. Do any of you have Spotify? I often listen to spotify playlists that I created or that I follow when getting hit. Usually something either relaxing, dance or chill tracks. Maybe we can create a list and share it there with everyone's suggestions? If you are into the relaxation stuff, here is a youtube playlist that is supposed to be the most relaxing songs. The first one by Marconi Union "Weightless" was supposed to be scientifically proven as the most relaxing song ever ... lol!
  5. @CHfather I am for sure a rare one. Have you ever watched a drug commercial on TV? At the end when it says really fast that 1% of people...blah, blah, blah ... I am the 1% lol. I am even super affected by caffeine as one cup keeps me up for hours and hours.. I have tried O2 every cycle for 21 years with every mask or attachment imaginable, and it does not work for me. I keep trying though. Unfortunately, I am allergic to triptans. Nearly died from a reaction to imitrex, but the doctors did not think it was from that until it happened again with Zomig. Thanks for the info, I will look into that. At this point, I have nothing left to lose.
  6. Thanks for the encouragement. I am on my third neuro. I have tried nasal ketamine and am on Batch’s vit D protocol. Doc said Emgality is the only thing left besides vagus nerve stimulation. I have not tried busting for fear of legal repercussions with my job. Mm seems easier to obtain or produce myself, and I am looking at all the info here about that and plan to move forward. Thanks again. Now to get growing and starting my online store.
  7. I exercise to mostly tolerate / make myself focus on something else during hits. Rarely aborts them for me. I walk/run/other if it is below kip 8-9. Walked 22 miles total combined in a 24 hr period a few days ago battling 7 of 9 hits.
  8. If I nap, I get woke up with a hit and will generally continue to get hit at that time for the duration of the cycle. Never tried changing times and staying awake does not stop hits for me. How about daylight savings? Does that wack everyone’s cycle and hit times? Will you have the same hits just an hour earlier? Last time I went through a clock change, my cycle got worse and the hits adjusted to the same basic times after a week or so… weird shit.
  9. This topic is relevant to me at the moment as well. 21st year as a cluster head. The only treatment that has ever worked for me was high doses of prednisone, but does not work anymore and caused me to become diabetic. I am episodic amid get hit the same time every year with 3 years being mild and manageable and the fourth being a battle on every level. I am two months in to a bad cycle 7-9 hits a day with 2-3 total hours of sleep. I just took emgality with no effect, in fact, I think a couple hits are more intense since the injections and I had a mild allergic reaction. I work as a high school assistant principal and athletic director. Have not worked since the start of the cycle. FMLA gives me 12 more weeks before I lose my job and insurance. Hoping the cycle ends before then, but if the pattern holds, it won’t end until May/June. I obviously am not safe to perform my duties and can’t do them from home. So, the added stress of potential income and insurance loss sure does not help my efforts to battle these things. Looking for options at the moment, but it is going to have to be a home business that I manage as no one else is going to hire me at my age (53). Was thinking about disability, disability retirement and the like, but it is so difficult to get. Actually, it is easier if you have migraine, tension headache or anxiety. I have 2 of the three with cluster cycles, but still too difficult to get. Unfortunately, I too have had negative thoughts. I thought about getting a little better life insurance policy and having an accident so my family would be taken care of. Honestly, I think about that at least two times a day/night during kip 9-10 attacks. I do not have the courage to follow through. There are so many things I want to see/experience and I know what it is like to have a parent commit suicide as my father did when I was 4 yo. Anyway, maybe all us clusterheads should band together and start our own business of some type…lol Sorry to ramble, thanks for listening. It is 2:30am and I am between hits. Have a good night y’all.
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