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ClusterBusters

Blair

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Everything posted by Blair

  1. Blair

    New - Looking for Support

    I’ve been suffering for the past month or so from a particularly horrible cluster headache cycle and feel completely and utterly drained - emotionally, physically, and mentally. Feeling pretty alone and hopeless. I was diagnosed with episodic cluster headaches my sophomore year in college - little over five years ago - after I experienced a headache I thought would kill me. Ever since then, I have struggled with managing them. Typically once or twice a year I get a cycle, and it lasts for 3-6 weeks. This year, I had a cycle in January and again, most recently, for most of September and all of October. My cycles don’t seem to be linked to any season - I’ve gotten them at all times of the year, in all different places of the globe. The current cycle brings headaches at all times of day - when I sleep and sometimes randomly during the day, like earlier today. I’m on a lot of drugs now which leave me feeling lethargic, dizzy, tired, and sluggish - sumatriptan as needed (100mg pill), verapamil (x6), prednisone (a massive taper), depakote (x2). I also take CBD oil and some “preventatives” such as melatonin, vitamin b2, and magnesium, which I read could be helpful. I’ve also tried acupuncture and other “interventions” as well. The verapamil appeared to work earlier in January, but it isn’t working now, despite an increase in dosage (I now take 6 pills a day vs 2). The sumatriptan can help me get through a night, usually, but I’m limited in how many I have which is a constant source of stress. It also seems to never work fast enough.. As for the other medications listed - Nothing else I take seems to work. Not as far as I can tell, anyways. I’m struggling to deal with the pain. It’s impacting every aspect of my personal and professional life, and I don’t know what treatment I should go to next. Just would be grateful for a friend and some advice. -Blair
  2. Blair

    New - Looking for Support

    Started the D3 regiment this morning with the verapamil (40 mg x6) and Depakote (250 mg x2). I noticed that the fish oil was a little tough on my stomach, but I'll be better about eating more food. It's honestly hard to eat as much as I feel I need to consume to support this dosage of pills, vitamins, etc... Also working on finding a new neurologist - and more immediately - a script for O2. I bought a can of the boost oxygen from amazon which I imagine will do little, if anything.. But at this point I'm willing to try anything. I'll take your suggestion ChFather, regardless of its effectiveness. Thank you for the suggestion on other ways to get by without O2 - starting to incorporate those into the regiment. I am also identifying new triggers all the time. Perhaps the most consistent trigger - or perhaps more appropriately signal - for me has been extreme neck stiffness. When my neck begins to seize up, I know that a cluster is soon to follow. I also get ear pain, almost like a bad ear ache, when one is on the way.
  3. Blair

    New - Looking for Support

    Thanks everyone for the help. Yesterday was another tough day. Sorry for being absent. Spoke with my neurologist - he prescribed sumatriptan in a nasal form so I will try that for the first time. Only having 6 sprays a month makes me nervous. Do you recommend using just one spray per headache and using it on the side of the cluster? Or is it true I need to take 2 - one per nostril? Neurologist suggested I try O2 off amazon and, if it works, he can get a script from my insurance.. Does anyone have amazon recommendations? I also mentioned the D3 regimen. Neurologist didn’t know anything about it but said it couldn’t hurt. I picked up everything, except boron and K2 which I couldn’t find, but am a little nervous. My blood pressure was low before the verapamil, and I take 6 a day (40 mg each). Was thinking I should chat with my primary care physician who I really like to make sure my “levels” are okay.. and I’m thinking a new neurologist is in order at this point.
  4. Blair

    New - Looking for Support

    Thank you Chris. I’ll look for the D3 regimen. I’ve been on prednisone for about 2.5 weeks - 6 bills a day. I’ll take a look and chat with my neurologist. Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it. It sounds like it gives moderately faster relief, which would be a godsend. I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance.
  5. Blair

    New - Looking for Support

    Thank you.. it’s comforting to know there are others out there who know what it’s like. If there are treatments or medications you’ve found successful that maybe I should try, I’d be grateful for your advice. I haven’t begun perusing the site yet, but hope to do so tomorrow.
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