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Into Light

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Everything posted by Into Light

  1. Our beloved Brain on Fire, who helped so many during her time here, died of natural causes June 5th, 2020, in the parking lot of an ER near her home. She made many laugh, a great boon to those of afflicted with the gift of cluster headache. She had been posting just before she passed; when a mutual friend was given her things, that friend changed her profile. This was done in the early stages of her dear friend's grief. I still miss her; we chatted almost every day. She had a great big heart, and a strong sense of righteousness. The only thing being born assures us of is dying. Godsp
  2. Wow, talk about a rabbit hole. I just opened every paper in a new tab. I'll probably create a LiquidText project to organize and distill them.
  3. If it works for you> hmmm...non surgically-maked emojis
  4. i just found out sleep apnea can be a cause of cH too.. interferes with sleep cycle and that messes with the hypothalamus which sets sleep cycle. it is thought [mea culpa, can’t remember medical citation] that CH often hits during transition feom or to REM.
  5. https://snoringhq.com/blog/sleep-disorders-and-the-cluster-headache-explained/ https://pubmed.ncbi.nlm.nih.gov/15186306/ https://mhni.com/headache-pain-faq/cluster-headaches/cluster-headache-sleep get a sleep lab studyw. then an Airfit10 CPAP. Try the nasl pillow mask with the tub entering at rthe top: you can toss and turn or cuddle your honey, or your dog if that's different. HTH, ad lux @Pebblesthecorgi 4) could be true anyway :)))
  6. Into Light


    and i'll just chime in with: i saw the posts. and by another as well. i'm with BOF all the way.
  7. thanks @Tony Only , i’m very sure i busted the ch on my third dose. issue is multiple comorbidities with similar symptom set: chemo, new chemo, newly diagnosed sleep apnea, head trauma in dallas and, temporarily, prednisone withdrawal after gout attack. i’m grateful that it’s obvious i busted the ch. lux
  8. chemo brain tbi intuition chiemo brain fog and getting slammed without a current medicine source what was i going to do?
  9. thanks @Tony Only. if you don’t mind, i can print this page, highlight the ch and leave it in his mailbox, if i can do so. he lives a few miles from me. geographically-speaking.
  10. i thought i’d need 40 but am fine withthe much less expensive wt farley 25lpm. i fill the optimask and after a bit can turn it down to 20. usually 15 won’t keep the 3-liter bag full.
  11. my neuro says vials no longer available. another option iszembrace...3mg sumatriptan sub-cu. i can’t stand that drug. have a ton of em lying around...
  12. ps rx must be written oxygen 15Lpm for Cluster Headache with the diagnosis code. If the doctor writes higher lpm than 15, and the delivery company has no regulators other than 15lpm (which more than mine don't I rexpect), you may experience, as I did, a refusal to deliver. Just take the 15 lpm rx, then get your own WT Farley regulator. Mine goes to 25 lpm and i need to start with that flow rate and then reduce it to where it keeps the 3-liter Optimask reservoir bag filled. WT Farley – steel and brass. I think I got mine on Amazon though you can use their website.
  13. Depends on where you are probably. Im in FL and self-pay Apria $79/month unlimited refills. Make friends with your delivery guy...s/he will be the lifesaver.
  14. hi @graci, medicare has only just started to pay for O2. Part of the covid-19 responses. previously they did not. I am trying to get the bills submitted to the feds rather than continue to self-pay, which was not an egregious amount until the pandemic laid waste to my art nusiness. i recommend that you check your policy. lux
  15. Medicare now covers oxygen
  16. @Brain on fire please don't let one ego harass you off of the board. Please.
  17. Thank you @igdc. My "bullshit-meter" is very sensitive, but I do like to get input from my family here before making final decisions. I will just say, "No thank you."
  18. Thank you @CHfatherand @Pebblesthecorgi. I’ve no desire to add anything to the mix that hasn’t been tested for ch specifically. though i have had to add severe ‘normal people’ headaches since the conference. Nomigraines, though. lux
  19. A neurologist in Bradenton, FL" has recommended the following formulary for me as a CHead. All the literature and the head of information at the company said there were no trials for CH Does anyone have any information on this. I don't want to take another thing. EBM MEDICAL Formulary for: EB-H4 EB-H4 ACTIVE INGREDIENTS: • Riboflavin…400mg (Active B2) • Coenzyme Q10…100mg (CoQ10) • L-methylfolate Ca…400mcg (Active Folate) • Magnesium Bisglycinate…350mg EBM Medical Contact Information EBMmedical.com Phone: 636-614-3152 Email: support@EBMmedica
  20. i don't try to abort with strength training, but i will go work out up through kip5. the pain goes away nearly immediately. and returns when i exit the gym. all the same, all different il
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