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Maryo52

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Everything posted by Maryo52

  1. Dallas, the moment you got in the car and just needed to sit, I've had several of those moments this year. There's stuff you can handle, stuff that's hard to handle, and then overwhelm. My year started with running over myself (not kidding) and then 4 or 5 things unrelated to that. Lots of overwhelm. Bunches of people wanted to help but there was nothing they could do. It's a great feeling knowing people are rooting for me. And so I appreciate your request for prayers. I'm not a praying person, but I'm a caring person and will hold you in my thoughts. One thing I will mention, as a nurse and a patient who has had too much surgery. What you're facing is a really big deal and if it were me, I'd feel better about the direction of things if it came from a team of doctors, but if it's one doctor saying this, you might consider a second opinion (from someone in a different medical system). This will buy you some time to get used to this new reality and give you confidence in your direction. What else can I say?
  2. I once had a side effect to tramadol -- my heart rate dropped into the 30s -- and at some later point, a doctor blew this off as impossible. But I looked it up and bradycardia was listed as a "rare side effect." Your reaction is your reaction, and it's a message saying that it's probably a good idea to explore other options, such as the Vitamin D anti-inflammatory regimen (which by the way gave me, a chronic, five and a half years of total peace). There's also a new drug, Emgality. Even without the bad reaction, triptans are not great for our bodies. I noticed that I had more and more palpitations and gave them up for that reason. Whoever prescribes your sumatriptan needs to know about your reaction.
  3. Maryo52

    Intensity

    First of all, the "pain in my head constantly" may be what we refer to as a "shadow." Clusters are referred to as the Beast. Makes sense, huh? As to your other point, I have to remind myself at bedtime that if I wake up and wonder am I having a cluster attack, I am, and I should get right on the oxygen. The abort is easier. There are some documents on this website under patient resources about how to make the most of your oxygen experience (doesn't that sound romantic!). Also, Four cycles in nine years is, as you point out, lucky. I used to be episodic, one episode a year for 6-12 weeks with headaches only every other night (sleep and alcohol are my triggers). Slowly over 41 years my cluster disease has progressed, and now I'm chronic with 3+ attacks every night year round. Lots of resources here, glad you found us. We are, I think for the most part, people for whom the medical world has not really made a place (although thanks to Clusterbusters and others that's getting better), and we are each our own guinea pig, experimenting to find remedies and prevention that work. All the best!
  4. @Freud Because of my predicament I feel as if I gotta at least try this. I cannot see staying on it forever but if it works I'll be definitely making some long-term adjustments. Nothing to lose. Tomorrow is Day 1 for me. I'd say "I feel your pain" but I have plenty of my own (ha ha).
  5. Just came across a study done in Italy testing keto diet on CCH not responding to other treatments. I'm going to give it the old college try. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/
  6. 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
  7. I wish I could participate but my brother who had CH is deceased.
  8. 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!
  9. 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.
  10. 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
  11. 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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