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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. 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
  7. 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
  8. 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
  9. @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
  10. @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
  11. 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
  12. I feel like many, many doctors (neurologists included) would be open to facetime/zoom appointments right now because of COVID. I had a zoom appointment with my regular doctor (not related to COVID) and it was pretty normal. I'd definitely spend the time looking up neuros that are covered by your insurance and just call their office and see if the doctor will see you via zoom. Worst they can do is say no. I really, really hope that your headaches can be treated with something as simple as indomethacin. That would be so amazing. Sending all my support <3
    3 points
  13. .....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
    2 points
  14. 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
  15. This so well written! Wow. I especially love this part: But the whole thing is really awesome!
    2 points
  16. 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
  17. 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
  18. That is wonderful!! Thanks for sharing this with the group.
    2 points
  19. @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
  20. 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
  21. 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
  22. 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
  23. 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
  24. @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
  25. 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
  26. 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
  27. 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
  28. ...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
  29. ...absolutely @Chris Moore!...and MANY thanks to @Bejeeber for pointing out the tele-med possibilities....i smack my head, well, more than usual, that it never occurred to me... ...these are the states Dr Ravitz covers: California, Colorado, Florida, Georgia, Michigan, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Texas. ...she's in Manhattan....do you know of any local clusterhead patients of hers.... and their thoughts?
    2 points
  30. 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
  31. Hi there you should consider making your own DMT. It’s honestly very easy to do. I learned everything on Reddit, and bought everything online and Amazon. mimosa hostilis root bark is what you need for extraction. It is legal and sold as a clothing dye. I vape a small amount with the APX volt set @ 2.8v and I can completely abort a nasty headache in 5-10 mins with no rebounds.
    2 points
  32. So, my CH cycles go ever 1.5 years and typically last 3 months. This last one started in December and it is now mid-April. Still having nightly hits. Now into month 4. One thing that is different is that I started working out for an hour 5 days a week. I've lost 35 lbs, however, I've noticed that after really heavy workouts, my hits get worse for the next few days. For the last 5 days, I stopped working out and the pain level has decreased each day. Honestly, I'm afraid to work out again. I've read online that those with higher vitamin D levels benefit when lifting weights and wonder if m
    1 point
  33. I had suffered from cluster headaches for for decades. The first time was in my twenties and now I am in 57. A few years ago my general physician recommended taking riboflavin (vitamin B2) daily as a preventative measure. I started doing that a few years ago and have not had a cluster headache since then. I understand that the effectiveness of certain treatments varies from person to person, but for me taking riboflavin has had a miraculous impact on my life with no side effects. Wishing all of you the best.
    1 point
  34. I'm curious to know too!
    1 point
  35. 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
  36. I tried to microdose. It just didn't work for me. I prefer the megadose! :p
    1 point
  37. Hi Rush. Concerned about panic attacks during a bust? I think everyone here knows exactly what rant I'm about embark upon once again - I'll try to keep it semi-condensed this time: Valium (or Xanax) can prevent those, and it isn't known to mess with the therapeutic aspects of the busting substance. Personally I think of it as insurance against a bad trip, and never leave home bust without it. OK I did try San Pedro Cactus powder for one bust and felt zero anxiety that time, so I skipped the benzo, but for vitamin M or vitamin L I find good old fashioned valium to be the shiznit (many othe
    1 point
  38. I dose all the time (about 15 times a year) and besides a dentist trip triggering I have skipped three solid years of cycles and counting.
    1 point
  39. 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
  40. Hi all, now that I have found relief, I thought I would circle back and post about it here. I am not a doctor but this is my experience and obviously is not advice. I got a terrible 'flu' when I was 15 and got lots of persistent symptoms including daily brain splitting headaches that lasted for 45 years. That's the very abbreviated version. My headaches had a lot in common with cluster headaches but also had some differences. Busting was almost the only thing that helped me but I felt terrible when I was doing it so I didn't do it as often as I should to keep them at ba
    1 point
  41. The trail is certainly impressive and there is a lot of scattered data unfortunately none of it really rises to the level of proof required to make it a bonafide treatment for cluster headaches. Much of the data is speculative and inferential. It is certainly reasonable to try these things but without rigorous measure of endpoints, control groups and analysis based on properly done studies the information remains in the realm of anecdote. Indeed Quercetin has emerged as a possible tool in the battle of covid and much is being fast tracked in terms of publishing but in the end w
    1 point
  42. I'm having a hard time knowing what you're referring to here. The D3 regimen? Antihistamines? On what are there "some limited scope studies underway" -- quercetin? The D3 regimen? Are you saying that Batch (xxx) is inappropriately "tweaking a theoretical construct" by recommending Quercetin in place of Benadryl? Maybe your final paragraph is a summary of what you are saying: I have no personal interest in this, except to re-post Batch's recommendation for those who might have missed it, but a quick internet scan shows, among other things, this statement from a 2016 published
    1 point
  43. Good suggestions from kat'. When you mention the "new D3 regimen," does that include Benadryl? If not, I'd include it. (I think the recommended dose is 25mg four times a day.) For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more. Higher flow rate seems to help with that (new tank is of course better). Is your pred dose pack a Medrol Dose Pack (the most common kind)? Often the pred levels can be too low in that to really be helpful. Relpax is a pill, right? If it is, I'm surprised that it helps you (but glad it
    1 point
  44. 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
  45. Nyquil contains 25% alcohol. Alcohol is one of the big triggers and would be counter intuitive to busting. Potter
    1 point
  46. iPain, From what I gather in your post, I suspect your dose is 'on the fence' of tripping. Jeebs mentioned above that many here have discussed the same issue, if the dose is just over the tripping threshold, many have increased anxiety (myself included). If I take 2g it's a completely different experience than when I've taken 1.2g. 1.2 and my thoughts are very distracted and regularly just "want it out of me". 2g and I might have 5 minutes of anxiety then i'm offffffff to wonderland... PFW,
    1 point
  47. A good hike can go a long way on a trip... AWAY from lots of people as communication can be difficult.
    1 point
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