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  1. https://www.washingtonpost.com/health/cluster-headaches/2021/04/02/66ac73f0-8cdc-11eb-9423-04079921c915_story.html Great, in-depth piece yesterday that brings visibility to Clusters, our battle, and the struggle for acceptance of psychedelics as a treatment. Thanks to Bob Wold, Dr. Emmanuelle Schindler, Dr. Larry Schor and others for their continued support and pushing the message for the benefit of us all
    9 points
  2. 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
    8 points
  3. P.S. I also wrote this in response to @Dipper, in case it helps your friend: Also in the meantime via Amazon... you may be able to alleviate some of indo's side effects by using herb / spice extracts. I know that might sound silly but I'm taking indo now and ginger has actually done the trick, at least at low doses. Turmerin is another I'm going to try, and I'm waiting for Marshmallow Root (coats and soothes the GI tract, guards against heartburn), plantago major / Greater Plaintain (counters irritation and inflammation in the stomach and bowels, combats gastritis, #3 :O, and
    4 points
  4. You guys are seriously great! You're such an encouragement to me, with all your help and your support. I feel like @Chris Moore said he felt after he had found you and this forum. I really, really appreciate you. Thank you @CHfather @spiny@Bejeeber @Chris Moore @jon019, and a thousand blessings to you for treating me so kindly and taking a newbie under your wings!
    4 points
  5. trjoas, Bless you a hundred times for your perseverance and your positive mindset.
    4 points
  6. .....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
  7. I’m piping in here as well. I’ve been episodic since 2008 and was very excited when Emgality was approved. I go into cycle every 1-2 years, and while my cycles began as a 6 week period, over time they have lasted months and been difficult to shake (some of that is my fault, as I am generally impatient with verapamil and prednisone due to the side effects, and trying other medications has historically made me sicker). I went into cycle in October 2019 and immediately began Emgality. I took it for 3 months with absolutely no noticeable side effects, and by mid January of 2020 my cycle
    3 points
  8. Personally, I wait two weeks after I attain pain free status to do 'the beer test'. If there are any shadows, I don't partake. But, when my cycle is over, I can imbibe all that I want to!
    3 points
  9. Hi @Tony Only, Also, I just came across this today: Oral glutamine attenuates indomethacin-induced small intestinal damage https://pubmed.ncbi.nlm.nih.gov/15128285/ This study was done on rats, not humans, but it still might be worth a try. Here's an L-glutamine supplement from a brand I like (generally less fillers than others) on Amazon: https://smile.amazon.com/Pure-Encapsulations-l-Glutamine-Hypoallergenic-Gastrointestinal/dp/B000VYZG0O
    3 points
  10. @trjonas, busting does work for my hemicrania continua. It seems to require a rather aggressive dosing schedule, like many chronic CH suffers. I had minimal to no response to indomethacin. But I am resistant to NSAIDS. I can’t comment on the boswellia, because I was already mostly pain free by the time I heard about it.
    3 points
  11. @Bejeeber@spiny@Chris Moore@jon019A quick update... after working on it every day this week (since Sunday; today is Friday) to my surprise and delight I was able to talk my neurologist via MyChart into a prescription for indo! She didn't like the idea at first but I kept asking and today she agreed to let me try it. I am so happy!! I wrote on another thread that either it will be effective (which would be WONDERFUL WONDERFUL) or at least I'll know I don't have HC or any of the other indo-responsive headaches. I understand from @CHfatherthat a person can actually take a while to respond t
    3 points
  12. Hey Bilal, I'm familiar with your problem. Spring pollen lets the CH beast try to open a big ol can of whupass on me If I let it. Fortunately with over 10 years experience with the anti-inflammatory regimen and lots of data from fellow CHers in the same boat, I've found loading vitamin D3 at 50,000 IU/day to 100,000 IU/day with the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 for three to five days and doubling my maintenance dose from 50,000 IU/week to 100,000 IU/week with the D3-50s for at least a month keeps the CH beast away. Since the pandemic started, I've also titrated the
    3 points
  13. 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
  14. 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
  15. Happy and successful busting to you xBoss. May the bust abide indeed - good one jon.
    2 points
  16. 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
  17. 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.
    2 points
  18. This so well written! Wow. I especially love this part: But the whole thing is really awesome!
    2 points
  19. You’re so right that the results have to come from the forums, as the results of the med trails are always statistical and most of the times not first hand by trail participants. I’ve been in the Aimovig trail in 2019 and Emgality trail in 2020. On both occasions trying to break my cycles as the meds (verapamil, naratriptan, sandomigran, prednisone, D3) I took were not sufficient anymore while the beast was jumping very ugly 8-14 times a day with kip 8-10 very often. I had 5 rounds of Aimovig and it did not break my cycle. It was only when I upped my verapamil from 600 to 720 that I noticed in
    2 points
  20. Back in February of this year my neurologists decided to try me on emgality at 300 mg each month for 3 months. The first month I took the medication I had zero migraines at first then as the weeks went by I started getting cluster headaches totally off season for me since my cluster headaches are every three years for approximately 18 weeks and I had them last year. The clusters brought on by this drug were not normal for me in other ways too. My normal clusters hit hard level 10 last about an hour without medication (imitrex) and I get them multiple times over the course of each day and nigh
    2 points
  21. That is wonderful!! Thanks for sharing this with the group.
    2 points
  22. @Tony Only I'm very glad you found it helpful! I also greatly hope this will be helpful for many. I so want to help anyone (including me!) with HC, clusters, and anything like them. They are so hellish and disabling. One note / update: on another forum it was mentioned that Gliacin is taking an extra long time to arrive due to COVID. These folks (they have HC) said to expect this and if it works for you, to make sure to order your next bottle(s) far ahead of time. They didn't give a time frame but I have the impression from the way they wrote it that it was a matter of extra weeks, not j
    2 points
  23. Thanks to everyone who have replied ! And thanks @trjonas - I have known Boswellia serrata to be used for CH but this is the first time I heard it's this much beneficial compared to indomethacin for treating hemicrania continua. I sent a link to this discussion to the patient in question and also shared this on Facebook, I think many may benefit of this !
    2 points
  24. A lot of episodics such as myself return to normal life, with triggers not an issue, unless we're feeling some indications (like shadows) that the CH is lurking again and ready to pounce. I won't presume to speak for otherwise chronic clusterheads who have busted out of it though.
    2 points
  25. I feel compelled to post this so maybe it may help someone. I have suffered with Episodic Clusters for 25 year. My most recent attack started 2 months ago. I have been on emgality, verapamil, and divalproex. To break the clusters I went to 150 milligrams of prednisone, stopped taking divalproex, and started lithium. I was unable to break this cycle. As I started to titrate off of the prednisone I became desperate. For 25 years I have drank diet coke and diet pepsi. I stopped drinking diet coke/pepsi and in addition started taking apple cider vinegar with a little bit of honey and water twice a
    2 points
  26. hi Leo...welcome to the boat.... ......aspartame is vasoactive and a distinct trigger for me... same as MSG in all its ubiquitous, mostly hidden forms.....none of the other artificial sweeteners, like sucralose, but folks with sensitivities to such would not surprise me..... ....have always believed a log of CH hits and cycles...recording timing, weather, location, and what you were doing and ingesting preceding same... can be determinative in narrowing down one's particular triggers. know of one doc who uses as a diagnostic tool the fact that cluster patients seem to do logging almo
    2 points
  27. @trjonas, yes, I have what my neuro has described as a weird HC, because I have all the classic symptoms, but little to no response to indo. A few people have contacted me on FB recently regarding HC and busting. Are you one of them? My first name is Jessica. I am pretty much pain free with psilocybin. It took several heavy doses (5G) once a week to get the headache broken and pain free, and weekly doses of 1 gram keep me here. The pain free time only occurs at about a week at a time.
    2 points
  28. Hi @Siegfried, I'm sorry for cross-posting this, but from my response to another person with HC taking indo on another thread, in case it helps you too... * I too thought I had cluster headaches but other kind and knowledgeable people on this forum suggested I might have HC, so who knows... yet. I'm trialing indo now, but I wasn't actually sure if I'd be able to get it, so I looked up alternatives. I found a really good alternative that medical studies have shown could be as effective as indo, but without the side effects, though it takes longer to take effect. It's boswell
    2 points
  29. Hi, I know I'm late to this thread but if it helps I just wrote an answer to a post by @Dipperabout Gliacin, a specialized extract of boswellia serrata. I believe they will ship it internationally from the US. It is an alternative to indo that does much the same thing as indo, but takes a bit longer to work, and most importantly has FAR fewer side effects. Here's my post: I found a really good alternative that medical studies have shown could be as effective as indo, but without the side effects, though it takes longer to take effect. It's boswellia serrata and there's a doctor in
    2 points
  30. What CHf just said! With the determined and open minded approach you're taking I'm feeling confident you are going to find yourself in a much improved place.
    2 points
  31. ...sorry you need to be back....but we all appreciate check ins to let us all know how family is, motivation to maintain vigilance, and reports on methods of dealing... ....could very well be that chill (ill?) winds a trigger.....could be the weather changes that bring those winds. noticed one time that nearly every time i was driving to the O2 shop i was wearing sunglasses. initially thought it was the bright light causing hits or the cycle....turned out, it was the RAPID change in barometric pressure (Pacific NW) that brought that sunshine. Lo pressure or Hi pressure no problem.....it w
    2 points
  32. I will have to remember that.. in the past I didn't even consider busting, but this cycle that (I think is just winding down) was a real test on sanity. The panic attacks I used to get pretty much kept me from even looking into it, but if I have a life preserver (and I do have Xanax for when I do run into anxiety), it would make it way less stressful.. so between now and my next cycle I think I may start "educating" myself in case I decide to take the plunge! Thanks Bejeeber!
    2 points
  33. 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
  34. 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
  35. 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
  36. @MaxHead I love Asheville! Thank you for letting me know - that's only about a 4 1/2 hour drive from me. I was actually hoping, as part of knowing who is near me, to petition South Carolina's legislators to make psilocybin and LSD legal for medical use, as Oregon has done with psilocybin. Anyone who lives in South Carolina could join me to make our cause more effective. That is, if I can get rid of my current cycle!
    1 point
  37. 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
  38. marcianin, what did the doctor prescribe to you? It might be valuable for you to read this post, which will give you an idea of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would suggest starting a new topic in the "Theory and Implementation" section, with the heading "Newly Diagnosed" or something like that. That's how you'll get the most advice and have it in one place.
    1 point
  39. Got my first shot Tuesday, had a migraine when I went to get it and about 1 hour after the shot the headache went away. Woke up at 4:30 on Wednesday with a migraine that lasted to 12:30am. Today all is back to normal. Thank god it did not wake the beast! Second shot on April 27......... hoping it’s a non event. thanks guys.
    1 point
  40. Leo, do you mean a concentrator (makes O2 out of room air)? For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing. I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great. If not, a
    1 point
  41. I was unemployed for 8 months after I lost my job. The whole time everything just seemed hopeless. Nobody would even call me for an interview. Finally landed a job. Not a great job but in my desired field. The feeling of finally getting out of that situation was amazing.
    1 point
  42. Re: Ditch the Benadryl (and switch to Quercetin) – A little history and UPDATE When it was clear that a high percentage of CHers who were either slow responders or not responding to the anti-inflammatory regimen treatment protocol in early 2011, I began looking for reasons why. The common thread that emerged from all the feedback from CHers reporting this problem and searches of open source medical literature was a combination of allergic reactions and systemic inflammation. Both conditions involve the immune system. As systemic inflammation is common to nearly every medical cond
    1 point
  43. 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
  44. 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
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