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Showing content with the highest reputation since 11/18/2020 in Posts

  1. Yesterday I heard from my neuro that SUN is working on a 3mg auto injector next to the normal 6 mg. Might be a possibility for folks that now have to split the 6 mg auto injector manually. Keep you posted on when it becomes available, here in Europe-Holland. All the best
    3 points
  2. Keep tabs on those randoms. There was a trigger that made them happen. If you can ID the triggers you can avoid the random CH and then get to work on the episodes.
    2 points
  3. Thanks Denny for sending me a note. Hi Fern. My doctor is Alyssa Lettich at Intermountain Health Care. 801-507-9800 at the hospital in Murray. I think she is good. Her first order of business will be to get you an O2 prescription. It amazes me the struggle many people have with that no-brainer. Appointments are usually a couple of months out. But, she tells the receptionist to get CH patients in immediately. Not all receptionists receive the memo, so ask them to check with the doctor and call you back if they keep telling you 2 months. I like that you're planning ahead. I ne
    2 points
  4. ....agreed with everything Pebbles said...doubles or triples supply therefore lowering cost, side effects and rebounds. the tiny insulin needles are less scary (tho not to everybody) and painful compared to the stat dose....and if prefilled, just as convenient (i used to carry such in a stat dose sleeve). until i found zomig ns to be superior in all aspects (save price) this was my last resort abort... ....insurance companies should actually be pushing these for all the above reasons.... but seem ignorant of the product in multiple ways...which is bizarre since the money aspect alone seem
    2 points
  5. You will find it more cost effective and less painful to just get multidose vials and draw up yourself. You can get 2-3 doses per vial using a TB or insulin syringe. There is considerable cost savings with the vials if available and for some reason that prescription sometimes skirts quantity limitations insurances impose. You can bet there will be no savings in a reduced dose auto injector.
    2 points
  6. This study is being conducted by Dr Emmanuelle Schindler who has been a speaker at several clusterbusters conferences and who also is conducting the psilocybin for cluster headaches trials! https://newatlas.com/health-wellbeing/psilocybin-migraine-psychedelic-clinical-trial-promising-results/
    1 point
  7. There is also D3. I started it last fall and then stopped. I don't know if I was part of a small percentage of people that have a bad reaction, or if it was a coincidence, but I had a big spike right then. I know it helps a lot of people. I started taking it again after my cycle wound down and still am. I'm hoping it may stop or delay the next one. Anyone else, do you take the D3 regimen all the time, in cycle and out?
    1 point
  8. Just read an announcement on the clusterbusters Facebook page for this conference to be held in Milan,Italy in May of 2022!! DD
    1 point
  9. Vader, I hope in your research you've at least become encouraged that there are treatments for CH, such as are outlined in CHfather's overview link, and also touched on by FunTimes above. Some of us really do find significant relief, and while there can be a bit of luck involved regarding who is going to respond to what, my money is on you finding your way there too.
    1 point
  10. Check the links in the description Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus... Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches
    1 point
  11. It does suck.. Welcome to the club! Like yourself we have all gone through this same type thing. You will find people that have had teeth pulled, nerves cut, tried all sorts of different medications and a few operations done to try to solve this. You will want to read up as much as you can here starting with the link that CHfater sent you, get oxygen as soon as you can to abort your attacks try a 5hr energy drink at the first feeling of an attack coming on can help buy some time and sometimes abort the attack on its own. read up on busting and the Vitamin D3. Oxygen is the best treatment for
    1 point
  12. Hi VaderXanth, That sounds terrible ! And it is a terrible story ! I always think this must be one of the worst. People that never got a headache before in their life and then at later age, suddenly get episodic or chronic CH and have do deal with this entire mess from the one day to an other... "from zero to hero..." I am sure you will find your way with the support and the help you will get here. CH father gave you a good starting point. All the best ! siegfried
    1 point
  13. Beautifully (and sadly) described, Vader'. You can manage this thing. I'd suggest you might read this file for an overview of possible ideas. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The great people here will be alongside you with as much guidance as you want.
    1 point
  14. Hello everyone! I'd like to introduce myself and talk about what I go through. First off, I'm a 46 year old male from Northeastern Wisconsin and I work a wicked "southern swing-shift". My work days are always 12 hours, being either 6am to 6pm (Days), or 6pm to 6am (Nights). My schedule has me working: 4 Nights, 3 off, 3 Days, 1 off, 4 Nights, 3 off, 4 Days ending with a 7 off stretch. Then the cycle repeats. About 4 years ago I was woken from a sound sleep by what seemed to be a headache. INSTANTLY. WIDE. AWAKE. I didn't know what was going on, seemed to me weird that a headache coul
    0 points
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