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  1. For whatever reason, it didn't like this paragraph:
  2. My clusters have seemingly evolved over the years. Like others, I was sure I was dying or had a brain tumor when they first started. Not knowing the first thing about cluster headaches. They started when I was about 16 or 17 years old, waking me at 3AM. Quickly peaking & lasting 3 hours at a horrid intensity. Idk if it's the meds over the years or what, but for the most part now, I'll wake with a shadow. & depending on the intensity of the shadow I'll either take a tablet or nasal spray. Since I only get 6 nasal sprays a month, I usually opt for the tablet first. It seems like there's some sort of intensity threshold there that determines the effectiveness of tablet vs nasal spray vs injection. I RARELY, if ever, have any nasal sprays left before it's time to refill. I MAY have a tablet or 2 left during a good month. I get 50mg tablets but usually try 1/2 first cause the nausea isn't so bad with just 1/2. & I hardly ever use all 4 of my injections I get a month. I'm sure that's still a pretty good bit of sumatriptan to be taking in though. Oh, & the nasal sprays are 20mg sumatriptan. I had looked into the d3 regimen years ago when I first found cluster busters. & I did request to have my vitamin d levels checked at my next dr apt. I believe it came back at 26ng/mL, which I've read that some consider low. I'll look into the d3 regimen on here further & hopefully get started on it soon. Sorry for the lengthy post guys. I've also been diagnosed with Idiopathic Hypersomnia (although, they didn't completely rule out Narcolepsy) in recent years. Dr wants to put me on Xywav, but I have concerns considering the reactions I've had to sumatriptan. I did read about a small study on 4 cluster patients who were treated with Xyrem that showed promising results. Just a tad weary of putting something else in my body. Thanks again yall!
  3. @CHfather, my neuro did write a script for O2 but there were insurance hurdles that I guess they'd never followed through with. It probably is time to seek another doctor instead of pushing it off. I feel like I manage way better than I used to so I've more or less just accepted my current treatments. I don't think I've experienced those reactions with just the tablets. The most recent time was after 2 nasal sprays - taken probably 2 hours apart. The injections DO always work. There have been many times I've not had any though & I usually try to give the other methods time to work before using the injection. My most recent script I picked up were the vials - idk why, but they kinda freak me out worse than the autoinjectors lol. But I'm also trying to use up my oldest meds before getting into those.
  4. Thanks for the responses everyone! I'm thankful (& hopeful) seeing so many finding some relief! Those side effects definitely seem familiar @Bejeeber. I did get my hands on some mushrooms a couple times. However, I didn't have the experience every one around me had. Maybe a mild euphoria but I did feel an unusual tightness in my jaw that I also get with sumatriptans. My best guess is I didn't wait long enough after taking sumatriptan. Haven't been able to find any more since then.
  5. Lol of course that one goes through..
  6. This thing is adamant about not allowing me to respond
  7. I'm a chronic sufferer & I've taken Sumatriptans for almost 10 years now. I've been taking verapamil for a couple years now, currently at 120mg 3x a day. There was a time, a few years back, where I'd used a sumatriptan injection & had a pretty bad reaction to it. I swore I had to have hit a vein or something cause I'd never had a reaction that severe, so I dismissed it. However, about a year ago, I'd woke up (after a night of drinking) with a strong shadow. I took a 25mg tablet & proceeded to work. 2 or 3 hours later, it was becoming unbearable so I took a nasal spray. I'd told my coworkers I was gonna go lay in my car while I fought it off. Not long after, I'd texted my coworker & asked her to come outside. My chest, back, mouth - all felt WEIRD/numb (for lack of a better word). I was hyperventilating. I could barely stand or walk & I couldn't talk right (assuming bc my mouth felt numb). My feet & my hands were all stiffened in an awkward angle. We both thought I was having a stroke. Seriously. She took me to a medstop, & once I'd managed to get in, the dr saw my condition & sent me to the ER. I ended up puking on the way there & felt like bambi trying to walk in. But by the time I was seen, most of my symptoms had subsided. They still ran some tests & an EKG, some things came back a little off but nothing too alarming cause I was sent home. Anyways, I've had this (all the symptoms as described above) happen a handful of times since then & was wondering has anyone experienced the same thing. The first time my husband witnessed it, he also thought I was having a stroke & wanted to take me to the ER. I just give it time to pass & it does, eventually. It's also worth noting, I've taken sumatriptan on many occasions since then where I didn't have these severe reactions. I've always said sumatriptans were a Godsend cause idk what I'd do without them, but they have always made me nauseous. My full-blown clusters last ~3 hours. Shadows can last for hours leading up to them. Usually, I'll take a tablet when I have a shadow. If it doesn't subside, I'll move on to a nasal spray. If it gets to the point of being full-blown, I'll use an injection & -to date- they've always worked. The injections, more often than not, make me puke but they work. Also, I did inform my Neuro of this. He sympathizes with me, hence the prescription for all 3 forms of Sumatriptan but he has a total of 3 cluster patients & he's pretty young so not very experienced on the topic. He sort of brushed it off & said it sounded like a type of dystonic reaction but he couldn't say for sure without seeing it. Anyways, like I'd said, just wondering if anyone out there had experienced anything similar. I thank you for taking the time to read this & hope you're pain free <3
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