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ClusterBusters

Into Light

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Everything posted by Into Light

  1. Into Light

    BOF

    and i'll just chime in with: i saw the posts. and by another as well. i'm with BOF all the way.
  2. 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@EBMmedical.com @BostonHeadacheDoc @Pebblesthecorgi @Brain on fire @spiny @CHfather
  3. Into Light

    Stephen King

    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
  4. Into Light

    Stephen King

    chemo brain tbi intuition chiemo brain fog and getting slammed without a current medicine source what was i going to do?
  5. Into Light

    Stephen King

    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.
  6. Into Light

    Lithium or Occipital nerve block

    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.
  7. Into Light

    Oxygen help

    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...
  8. Into Light

    Severe headache

    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.
  9. Into Light

    Severe headache

    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.
  10. Into Light

    Severe headache

    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
  11. Into Light

    Severe headache

    Medicare now covers oxygen
  12. can we unfollow a topic? @CHfather @ThatHurtsMyHead ?
  13. Don't hijack my thread to COVID links.
  14. @Brain on fire please don't let one ego harass you off of the board. Please.
  15. 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."
  16. 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
  17. Into Light

    exercise and sex

    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
  18. Into Light

    where/how i get oxygen - FLORIDA

    I'm in Sarasota and have been well-treated. Apria is the company and least they take a self-pay amount that I find very reasonable. The delivery guys are your friends. Be good to them and life is good.
  19. Into Light

    Kings of pain

    is that the funny oblong ball?
  20. Into Light

    Kings of pain

    agree. but then i watch no television at all. noxious tool of the devil.
  21. hello all, i want to introduce my dear friend @spikeinthehead. he just registered yesterday; i've sent him the url to the readme banner, ahem, @CHfather. i know he'll develop his own connections, but i want to specifically introduce @Brain on fire, @spiny @Freud @dmlonghorn @ThatHurtsMyHead. Also, @Batch, perhaps you could pm him with the link to the D-3 regimen. thank you all! lux
  22. Into Light

    introducing my friend who just registered for the board

    information: tranceplants.net will not ship to florida.
  23. Into Light

    Females and O2

    according to my neurologist, who tried to prescribe the vials. and they are no l longer available. i get zembrace which is 3 mg subcutaneous. haven't used it.
  24. Into Light

    introducing my friend who just registered for the board

    karen, i'll be back wednesday. oral sumatriptan is worthless. takes an hour to kick in. the sbucu injectors are the best emergency relief. if there hasn't been an abort via o2 which is the best. after he gets the o2 script i already sent a link to the correct o2 mask for us. get two. he will, hopefully sooner than later, have Mtank(s) at home and he can do what many of us do and keep an Etank on the car. 5-hour energy drinks are reputed to work much better than espresso. hang in there. this is an amazing support group. one of a kind. with cluster knowledge in aggregate that far surpasses the information that almost any other doctor or neurologist has. into light
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