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  1. .....yeah, an albuterol trigger wouldn't surprise......damn steroids are so active! if so, stinkin' thing is you did nothing wrong....an appropriate action to deal with your needs.......one that any NON clusterhead could do w/o a second thought or consequences......sheesh. ....try some antihistamines (old school work for me) for spits and giggles too...it IS springtime! ....may the "bust" abide j
    3 points
  2. Hi ifb, glad to see you got the super expert advice from CHf! sucking ice cubes (especially when placed on the CH side of the roof of the mouth) has worked for me as a helper for aborting attacks when I'm not in in a high raging phase of a cycle, but it's been an adjunct when also breathing freezing cold air at the very first sign of an attack. In warm weather this can be done by going out to the car (if you have one), blasting the A/C, sticking your shnozzola up the the vent, and doing some serious nose breathing. Then around the time a gloriously delightful in comparison ice cream type
    2 points
  3. Welcome, its'. As we say, sorry you have to be here. First things first. It will make a difference. Sounds like you had a useless system the last time. What is the current flow rate? It's rare for a doctor to prescribe more than 15 lpm, but most people find that flows higher than 15 lpm make for better aborts. Throw down some coffee or an energy shot as you start of the O2, use a good breathing technique, and your life is gonna start changing. Consider getting the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&
    2 points
  4. Happy and successful busting to you xBoss. May the bust abide indeed - good one jon.
    2 points
  5. I use a lot of O2 and the only time I thought it was not effective is when the tank was near empty. I don't know why, but the first O2 from a full tank is much more effective than the bottom.
    2 points
  6. Hello friends, The first 10 days of my indomethacin trial are behind me. I started to take it 10 days ago when a new barrage of attacks started. I was advised to take 150 mg/day when they started and continue for 14 days. When they started I took 100 mg and normally when they start, the intensity is ramping up one after the next and the background pain as well until it becomes unbearable and need Zomig to temporarily abort it or oxygen to make it livable. I can stand the entire thing without abortion for a maximum of 4 or 5 hours. I am usually on one 10 min attack every 30-60 min non-stop
    1 point
  7. Hello friends, I usually take 2-3 days/week indomethacin to combat my CPH. Somewhere between 50 and 150 mg per day. With this regimen, I haven't had an attack since July (I then ended up in the ER because I skipped it) and it feels weird. Previous week, I started to believe it was really gone and was in for an experiment - no indocin this weekend... Well it didn't end well. Friday was OK but in the evening I felt something I recognized from in the past. Saturday morning 8 am attacks came in full force, 7-10 min per unit and after an hour I had already 3. Incredible pain like so
    1 point
  8. Hi, this is my first post so take it easy on me :-) I have suffered with CH for about 20 yrs, but was only correctly diagnosed about 6 yrs ago. I had an addiction to Advil Cold and Sinus pills as a preventative measure for about 10 yrs, 3 extra strength with breakfast and 3 before bed. Looking back, I don't think they worked very well. I had an Ear/Nose/Throat specialist perform Sinus surgery to try to alleviate the pain, to no avail. My GP, after diagnosing me, prescribed me Zomig nasal sprays and as a preventative measure, Verapimil Slow release, 120mg/day. 2 yrs ago
    1 point
  9. ....hi IFB...welcome....you've heard great stuff already...if i repeat, oh well... My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use. .....some go (much) higher to find relief...don't limit yourself ...the script is just the "ticket to ride"...we each find the best flow that works...nobody else knows or cares what that is. a non-rebreather type is vital...just make sure you are not out running the bag....better yet would be a demand valve or direct from a tube. there are various breathing techni
    1 point
  10. Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them. Some people credit other ingredients, such as taurine. I'm not persuaded about that. So straight strong coffee might work, as it does for some people. A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night. A non-rebreather mask is fine.
    1 point
  11. So. I wrote that blurb at the office and I appear to have skipped over some things. My original scrip for O2 was 8-12L /min, as was prescribed by my neurologist. My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use. My Verapamil was increased last year to 240mg slow release. I was taking so much Zomig, that my benefit plan started capping it. Here in Ontario, Canada, the cost is $28 each spray. When I got below 3 boes (of 2). I would literally start to panic that I wouldn't be able to fin
    1 point
  12. This is interesting. I will put a little piece of paper towel or tissue with Frankincense oil on it and press it to the roof of my mouth for about 3 minutes to help abort an attack. Used like a 5hr energy drink along with the oxygen and it does seem to help me. My wife found out about this on some essential oil website a few years ago.
    1 point
  13. Let me start off by saying, I was a big skeptic of essential oils. I have a family member that I have joked with for years about her belief in it. Today, you can call me a believer. I first started getting CH 12 years ago and it has always been a 2-4 month cycle every 1.5 years. I started my cycle in December 2020 and did all of the usual things that I know work. D3, busting, etc. Still, I'm in month 5, which is not normal. One thing that has happened in the last 30 days is the frequency and pain level have decreased dramatically. So much that during the day, I only have shadows,
    1 point
  14. I witnessed something similar this cycle, never had that before in terms of workout. I have not worked out (at all) for around 10 months and the same day I started again some weeks ago, my cycle started. (which is over a month late then usual, I thought I passed a cycle again this year) I did not start out with intensive training, I know what I am doing in terms of very slowly getting into lifting again after a longer pause. Seems this time I angered my CH - I have since tried again to workout on 2 more occasions with very moderate units in the morning, the hits the following night where
    1 point
  15. ....favored m60 and e tanks....found the the m's a workhorse, just crank and breath, thankfully no thinking involved... ....the e's took a bit more "finagling" (a word my dad favored). as the volume dropped (especially below half) the lpm's would follow...i was constantly adjusting the flow upward to maintain adequate lpm. got to where i went by sound, as reading a stinking dial when being hit was not user friendly. in my case, it meant volume left was not a consideration and i used to leave a little in several tanks as a "reserve".....like a scuba diver. the horror movie scenario of a f
    1 point
  16. Intriguing stuff, tmac, I'll be following your updates with interest.
    1 point
  17. .....are you using caffeine/energy drinks to aid the O2?....I found it improved effectiveness dramatically if powered down immediately when a hit felt.. ....i am also one of the advocates of hitting the oxygen immediately and paid the price often if i could not get to the tank soon enough....BUT, over the years there were cycles where i HAD to WAIT until the hit got to a Kip 2 (not 1, not 3+) for it to work...and it would. strangest damn thing that i found by accident, after much panic that the o2 wasn't working any more. I have absolutely no explanation for it, but I do know that cluste
    1 point
  18. Update: I was at the peak of my cluster-headache phase. I decided to take psylo-cybin twice. Once 1.5g and once with 2g, two days in a row. Next day, massive cluster attack. I then decided to go with Wobenzym. (German name for this three enzyme compilation which has a strong anti inflammatory effect). Best thing about it, it is over the counter. 28 EUR for 100 pills and natural...just enzymes! (used against inflammation of vanes, bladder, tendinitis, rheumatism a.s.o) Making sense everyone ;)?! Wobenzym Plus I have been feeling awesome with no clusters for 12.5 d
    1 point
  19. Late to the party but figured to response as well in case anyone stumbles upon this post. I looked into wobenzym years ago as well as I knew about its strong anti inflammatory ingredients (had it prescribed because of an inflamed knee, worked wonders) Just to state, this isn't any kind snake oil it's a very well known and reputable brand around here, often prescribed for any kind of joint / limb etc issues by doctors. I don't think it's available in the states for whatever reason (it was not back then, maybe it is now or under another brand name) I didn't try for CH myself as I want
    1 point
  20. I am soooo excited to announce that Clusterbusters is going camping July 23-25, 2021 in the Shenandoah Valley! We hope that you will join us. More information and registration can be found here: https://cureforclustercamping2021.planningpod.com Please don't hesitate to reach out if you have any questions. I'll try to check in here, but also feel free to email me at eileen@clusterbusters.org.
    1 point
  21. This so well written! Wow. I especially love this part: But the whole thing is really awesome!
    1 point
  22. Thanks MaxHead for posting the article. Yeah it turned out pretty good. It was great that the author interviewed and quoted a lot of good qualified people like Dr. Schindler that gave the treatments and clusters in general, the respect they deserve. The author is a Pulitzer Prize winning author so she carries quite a bit of weight and the article is getting a lot of attention for clusters. Thanks for everyone here that has helped keep these fires burning all these years. Its been a team effort. Way to go team ;-) Bob
    1 point
  23. I encourage everyone to read this. It's a great article to share with friends, family, and people that really don't understand what we're up against every day. It's amazing to have something recent from a nationally-recognized publication like the Washington Post to share. Please take advantage of the timing and relevance of the article. With 11,000 Clusterbuster members sharing this article we can help leverage the great work that Bob Wold and others are doing on our behalf. This type of media coverage is difficult and rare to achieve for our disease. This is a great community tha
    1 point
  24. You know, I’m really, REALLY fed up with this whole “war on drugs” rubbish! A couple years ago, the UK legalised cannabis for medical use. This meant any doctor who wanted to prescribe it had get up to speed with its use, and only expensive, private consultants did that. You can’t get it on the NHS like you can any other medicine. Someone recently came up with an ID Card (called a CanCard) that says you have a medical condition that you’re treating with cannabis, and the police have agreed to not arrest you or take your medicine if you have the CanCard and are caught with cannabis
    1 point
  25. ...yeah, i know, it aint gonna happen officially. we've pretty much always been on our own...or what's a Clusterbusters for? citizen science that DECADES down the line might get a mention like "yeah those alt medicine cluster folks were onto something".....................
    1 point
  26. My Google News feed keeps presenting me with confirmation bias stories on the subject : PsyPost: Rapid antidepressant effects of the psychedelic ayahuasca linked to changes in inflammatory biomarkers.
    1 point
  27. I was kind of going off topic a bit over at DMT - First time finding an effective abortive, so I'm moving my tangent touting psychedlics as anti-inflammatories over here. If I understand correctly, the anti-inflammatory effect of psychedelics is thought to be mediated through the serotonin 5-HT2A receptor. Article - Psychedelics as Anti-Inflammatory Agents Article - "Research has shown that psychedelics, such as lysergic acid diethylamide (LSD), have profound anti-inflammatory properties" Article - Scientists identify a powerful anti-inflammatory compound in psychedelic d
    1 point
  28. Yep. While it's been known to most. I'm sure the medical community (Doctors...) are light years behind in getting the memo. Right along with writing O2 scripts. Cheers, J
    1 point
  29. https://psychedelicreview.com/magic-mushroom-microdosing-nasal-spray-announced/ Silo Wellness, a Springfield, Oregon psychedelics startup, has announced a “magic mushroom” metered dosing spray intended for consumer microdosing. The company claims that the nasal spray will address some of the primary issues with consuming mushrooms including dose reliability, stomach upset and accessibility. Silo Wellness’ says their formulated product addresses an unmet need in the burgeoning field of psychedelics. “…we need to be able to give patients predictable dosing so they can self-titrate into
    1 point
  30. https://journals.sagepub.com/doi/full/10.1177/0269881120940937 I hope this brings you the full text. The file is too large to upload
    1 point
  31. Back in 2016, a fellow wrote this: >>.I mix and chug down: 1 Teaspoon of baking soda 1 or 2Lime(s) (Preferably organic) 1 cup of filtered water (Don't use tap water) Not only I have been able to reduce the intensity of an attack, but I have been able to abort it. It's worked several times.<<
    1 point
  32. Thanks for attaching the two articles. Nice info to have here.
    1 point
  33. I've had cluster headache for about 4 years now. I've tested a range of different treatments, both from the doctors and some more experimental, but nothing's helped much. I was travelling to India for work about six months ago, when I was recommended an ayurvedic doctor who had been successful in treating an acquaintance' migraines. Although I was a bit skeptical, I thought 'why the hell not' and went. The doctor had mixed a range of different medicines for me, and I went there for three days for a treatment that consisted of warm oil being dropped in my forehead and rubbed in to the skin arou
    1 point
  34. First of all, I have to say as far as I know, when treating illnesses, Ayurvedic approach does not aim to treatment, it aims to curing the condition. I had to make this post when I saw people making fun about Ayurveda in Facebook Cluster Headaches group. I think a great place for more serious discussion about this would be here in Clusterbusters forums. As a personal opinion, I think Ayurveda would have a lot to offer for CH patients and I have seen some of this potential myself. This is something we would seriously need to look into. I have heard wiser people than me say that Ayurveda might h
    1 point
  35. 1 point
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