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Everything posted by Freud

  1. Any thoughts on Emgality? Haven’t seen much from chronics and Emgality here let alone episodics. @BostonHeadacheDocany thoughts?
  2. Update bad news. Saw new Neuro today and he doesn’t use ketamine like his office staff said he did. I’m up the creek w no paddles. Getting my self used to not having any aborting options other than the 4 M tanks I’ve been saving for the days you just want to die so hopefully I don’t enter that head space. instead the new Neuro wanted me to try Emgality. This was after me telling him I’ve had CCH since 2017 w only one month break in the first year from mm but couldn’t repeat results. He then says @are you sure you have CCH you get 6-10+ attacks a day? “. I almost lost it. This was after listing all the failed treatments I’ve tried and the ones I won’t try. He gave me a garbage bag full of Emgality (small bin) full of migraine starter boxes. So that’s 2 120mg auto injectors that I have to play w one to only get half a dose out of and into me each month. I have not heard anything good about success in CCH Pts. They abandoned the CCH arm of the study for Christ sakes. He didn’t want to hear it. Says so I guess I’ll see you in 3 months? And he took an empty troche packet w my script. To talk w his partner about but wasn’t hopeful. the hunt fir non psychiatric at home use Ketamine continues. Purdue Pharma Feck U. Screwed up all of pain management. Freaking infusion only clinics are everywhere. I’d try it if I could afford it.... got my oh shit helmet on!
  3. I will hire an attorney if I get rejected but as you said it’s not enough to live just at or above the poverty line. I have no doctors now, aside from the ketamine and psych meds I have no major issues other than a bulging C5. I have no medication side effects. So no doctors to fire. I just moved and have an appointment w a Neuro listed on this site. I don’t need a change to my meds except increasing my ketamine/ adding intranasal. Sounds like you’ve been through the ringer. I think I’m going to look for a job training dogs. I apprenticed a dog trainer years ago and it seems like from all my options that would be the best w my CH. I have had 3 good days in a row. Slept 12+ hrs 3 days ago. First time I’ve slept for more than 5 hrs in 4 years. It’s usually 30-60min at a clip abd I get whacked. I think it’s bc I used up my ketamine early and suppressed my CH. I really want to try an infusion but that’s unaffordable.
  4. Freud


    I have a cluster friend who has constant shadows. For her oxygen can abort them most of the time as well. Have you tried that?
  5. Freud


    For the hits that ramp up quickly and don’t respond quickly I have noticed as others have pointed out that technique plays a huge role. If you’re just getting hit and ramping up rapid shallow breathing is fine. But when the beast is raging it’s important to take big deep breaths and hold them for 5-10sec. Forceful exhale all the way, big deep breath, hold....repeat. That works for me most of the time for the stubborn hits.
  6. My prayers and thoughts are with you! I pray you find a good surgeon and are alleviated of this problem all together. My heart goes out to you @Dallas Denny
  7. Thank you all, I reached my destination today. South East FL... it was a rough trip on me and my pup but we made it...
  8. Hey @FunTimesim traveling cross country for the next couple of days. Call me when ever. Seems like we have similar patterns. I successfully got the house ready for closing. By bye north east. Hello Cough cough Florida. On the road w my pouch. Any one want to catch up the phone lines are open. You get all the venting you want absolutely free. Act now. If you don’t have my number but want to talk send me a msg.
  9. There is an upside, no guessing when you’re going to get hit.
  10. How are y’all getting the YouTube to show up in the post and not a link like mine?
  11. Id replace the “ 25 of “to “15-25LPM.” Otherwise you need a diagnostic code on it and you’re golden. Please don’t forget the code they will refuse to pay. It’s called a ICD 10 code.
  12. I know a Female CHer from here who doesn’t post much but turned chronic last year and has the constant shadows but no major hits.
  13. PS 7LPM is way to low. We recommend at least 15 lpm w a nonrebreather mask but 25 lpm is most effective for most of us.
  14. Lactation safe! I know @xxx has several grand kids whose mommas were on his regime or a variation there of...
  15. And best part is there is no side effects except for may be drying you out. Although I fell asleep in my long post hit phase last night, and got a little dry. It’s the exception for me. Unless you have severe COPD and you live at a saturation in the 80s there is no such thing as over use.
  16. I give up, I can’t find it. It was a country song about CH. a Neuro played it fir me at my first CH visit. He was just tickled pink to find it on his phone and played it for me. It was on iTunes but I can’t find it. I’ll call the worthless doc or stop in and see if he can tell me what it is.
  17. Also interesting rid bit found when searching: https://www.rollingstone.com/music/music-news/bad-brains-h-r-raising-money-to-combat-rare-headache-disorder-182309/
  18. Nor music but amusing and found on YouTube when searching for this country song about CH. https://youtu.be/7GadfaskoH0
  19. PS, please look into Oxygen. I put it off for the first year I had CH and even though I have some stubborn CHs that it doesn’t always work for it’s truly a godsend. If you want to see if it works for you go to the ER during a hit aka attack and see if it helps. It has to be high flow, at least 15liters per min. Preferably 25LPM, but most ERs don’t have a regulator that goes that high. With a nonrebreather mask. sorry if I sound like a broken record...
  20. Busting isn’t part of most peoples abortive agent. There are some that try the SPUT (Small piece under tongue) and have reportedly gotten relief, but that’s not been true for most that have tried it. When we say busting aborts CH we mean aborts the cycle or gives you CH free time for chronic CH sufferers. I highly recommend connecting w @xxxand try the D protocol.
  21. Aside from the Vitamin D protocol which has a similar success rate to busting, oxygen will be your best friend. It’s worth the money! Are you sure insurance won’t cover it? CMS approved it and insurance cos usually follow suit. Unless you’ve tried to get it in the last 6 months I’d try again. There is a trusted Dr list in the general board. May be one is close to you and you will get real help. Where are you located? My heart goes out to you. I couldn’t imagine how hard this is on you.
  22. @eeeHave you tried anything else from this site like busting? Or the vitamin D protocol? They are more of a Jesus shot if you aske me than some doc who won’t disclose what he’s using.
  23. Thank you @Rod H I’m fighting the good fight. Did manage to get a little nasal spray for my trip and to bridge to a new doc. However one ketamine clinic I spoke w told me at home ketamine nasal spray is illegal in Florida. I’m not sure if that’s just for Esketamine for depression or all ketamine. I’m going to be devastated if they were right about the law. I really need the oral troches and then the spray if the troches and oxygen don’t abort. Less than a week till we move and I’m shitting bricks about not having oxygen if Apria won’t fill my tanks while I’m “on vacation “ until my health insurance gets switched. Thank god CMS approved oxygen this year. Thanks to all that pushed for it all these years.
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