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Maryo52

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Maryo52 last won the day on October 1

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  • Location
    Maine USA
  • Interests
    gardening, kayaking, vintage refrigerator restoration (really!), and lots of others

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  • Cluster Headache Community
    Yes
  • Migraine Community
    No

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  1. I'm chronic x 5.5 years now, which came after 36 years episodic. I'm OK with 3 attacks at night aborted with O2 but there are six attack nights, and the nights where the last attack won't go away until I get up and shower. I am just starting my busting adventure so have nothing to report. Currently I'm on verapamil and maybe if I took a higher dose I'd see some results but my BP is on the low side. My mantra when things look their darkest is, "This is temporary." Or, "If you find yourself going through hell, keep going." I did have five and a half years of bliss due to Vitamin D regimen but recent medical issues/antibiotic therapy seems to have busted my good fortunre. BTW I also live in the Northeast
  2. I wish I could participate but my brother who had CH is deceased.
  3. Not sure if I've weighed in but I also get pain in occiput, neck, shoulder and to the middle of my back. Oddly, my clusters first presented as "back attacks" which I noticed occurred at the same time every night. One day I had a massage, and that night they reverted to the familiar eye/head/shoulder/middle back attacks that I've come to know and not love!
  4. Hi there, my CCH tend to be most intense in the back of my head, and sometimes they go down to my middle back (same side). Clusters know no rules. The stomach could be a type of aura, or perhaps it's the cause. We each are our own puzzle.
  5. Thanks Spiny. I bought some energy shots today after discovering my M60 tank is nearly empty (or perhaps the regulator is faulty). I used it maybe five times each Fri & Sat nights for ten minutes or so/10 liters. I wouldn't think it would be empty but I fear it is, or is close to empty. I've loaded 100,000 iu a day for several days. My PCP gets a little flipped out about my levels when they're in the 90s. But I can ignore that. My PTH and calcium are fine. I suspect that my recent prosthetic knee infection + surgery and antibiotics is somehow interfering with the Vit. D. I've developed a tremor during my illness -- that's neurological, caused by what I wonder? And because of my antibiotic therapy I'm not sure I'm a candidate for a prednisone taper because it lowers immunity but I'll ask. I'll try to sleep head above heart tonight. I'll explore RC seeds. I appreciate any and every suggestion!!!! Thanks and love, M
  6. I've been living the blissful life of no attacks for five and a half years (Vit D regimen). But . . . Late July developed an infection in my artificial knee, surgery with antibiotic washout, IV antibiotics for six weeks, now on oral antibiotics for six months. So many medications were put into me. I got through it all and just when I started to see the light of day, the attacks returned. I have upped my Vit D well past the level that worked and attacks are horrible, four a night. No sleep some nights. Got back the big O2 tank, came with regulator that went to 8 liters, quickly phoned and arranged an exchange. No other abortives in my household (except ice packs). I've been battling pain/illness for seven weeks and have battle fatigue. I'm 69. My PCP gets a little overwhelmed with my cluster disease. I've arranged an appt. with my neurologist on Monday so that's good. Neuro has lots of books in his office. One huge book was simply titled "Vitamin D." I knew he was my guy. He'll come up with ideas and my PCP prescribes accordingly. So that works OK even though it's taxing to my PCP. I know about busting and had a failed attempt at growing fungi 5-6 years ago. Even if I got it all lined up, it would be weeks before I'd be able to try that route. And I would like to. Is there a handbook of some kind with all the necessary details? Is m-----ALT available anywhere in the US? Any other ideas to help me endure this punishment? Thanks and love
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