Jump to content

Leaderboard

  1. jon019

    jon019

    Advanced Members


    • Points

      28

    • Content Count

      717


  2. CHfather

    CHfather

    Master Members


    • Points

      28

    • Content Count

      5,665


  3. spiny

    spiny

    Moderators


    • Points

      24

    • Content Count

      3,621


  4. Ricardo

    Ricardo

    Advanced Members


    • Points

      13

    • Content Count

      790


Popular Content

Showing content with the highest reputation since 05/22/2021 in Posts

  1. ...hi mr w, ...stress or coming OFF of stress are CH triggers for many. during an ECH cycle, coming off any significant stressful situation was almost a guaranteed hit for me....staying stressed was (tho less so) preventive. my speculation that it's changes in hormonal (cortisol?) or other physiological systems. CH hits or cycle never seemed connected to my pscyhological well being..... no matter what that was.... .....CH changes...it just does...not necessarily indicative of any significant health changes. one thing it is NOT is a psychological illness....ya can't think it away.
    4 points
  2. Hello, About 2 weeks back, I was suffering some very nasty attacks. 2 to 3 a day each lasting an hour reaching extremely high pain levels. I happened to speak to a friend who is a homeopathy doctor. I was surprised to hear from him that cluster headaches were curable in homeopathy. He spoke to me for an hour on everything except my attacks including emotional issues that I may have had in the past. He sounded very confident. He gave me some meds. Next day onwards my pain levels came down. 3 days later my attacks became less frequent. 2 weeks into the treatment, my attac
    3 points
  3. jfrillin That does suck and I do whatever I can to stay away from the ER. only made one worthless trip and said never again for the same reason you have now. Not sure of your past but maybe re evaluate your tools. D3 has had a few updates to it over the years and maybe some of them can help you out. I also have tried the Emgality and it seemed to work the first month but did little at all the few following months. Sometimes I get lazy with my oxygen breathing technique and my wife needs to point it out that im doing something different to get me back on trac. I also down a 5hr energ
    3 points
  4. I have decided to take the plunge and try Botox to try and get my migraines under control. I feel that if I can get my migraines under controll I will be able to put a cap on my clusters. The reason I feel this way is because I have migraines at least 3 times a week and I have never had a cluster event without having a migraine. I go for my first treatment Monday, I will give updates on what happens.
    3 points
  5. Hello everybody! Well, it's been a few years since I've been in here, but there is one guaranteed thing in my life: The BEAST! 37-plus years of this torturous dance and counting. Been learning more about my past and have a theory. I was severely and repeatedly abused and traumatized when I was very young, and highly suspect that the raised cortisol levels had either shrunk or deformed my hypothalamus. The silver lining is that I have a hunger for knowledge to finally join the fight in better figuring out the beast, so all other cluster headaches sufferers (survivors) live a 100% pain-free
    3 points
  6. Dr. Lawrence Robbins of the Robbins Headache clinic recently came out with an article on the CGRP mononclonal antibody drugs such as Emgality. He has been one of the biggest prescribers of these meds and to me, he seems like the most reputable, qualified doctor that we have in headache medicine right now. Technically the subject of his article was not the CGRP drugs, it was more about the system that we have in place to get accurate info to patients about medications. And he titled the article "The system is broken". And he used the CGRP meds like Emgality as an example of just how bro
    3 points
  7. I agree with @jon019. In the past when I was young, stress was a full time part of my life and the headaches seemed to be occasional and manageable. Once I worked my way into a quieter less stressful situation the headaches seemed to escalate. Psychological stress seems to make the demon less effective while physiologic stress raises all sorts of hell. (My experience) You will never ever be able to relate the pain and related issues to anyone in a understandable way. There is just no way to do it. Watching a video like the National Geographic piece featuring Dan shows the hor
    3 points
  8. I’m usually on here looking for help and don’t consider myself qualified enough to give any advice out but I will say busting never worked for me either. It would kill a single headache but it would never end the cluster. The D3 regimen is the only thing that bought me A LOT of time (9 mo tops between without; 3+ years between after D3). Benadryl helps. Message Batch please, he is so helpful, smart, and kind. Wishing you the best
    2 points
  9. Same here. I find myself saying wow I'm getting off easy with these clusters for the first couple few weeks then it really gets bad. Tapers down in the end. Today I only had one attack that was about a seven. Working on day 70ish of hopefully no longer than 90. Glad it's getting better for him Paula!
    2 points
  10. ...mine a bell curve with slow ramp up...plateau...slow ramp down...and one last blaster at the end. considered myself fortunate in that i knew the "pattern" so could make plans for battling or getting on with life. whether this is his pattern or not only experience will tell...tho interrupting that with a preventive (busting, D3, verapamil) certainly worth the effort....
    2 points
  11. Hi all, Been awhile. Had almost 7 months PF after my last cycle, which was the longest I ever suffered through. Towards the end of my last cycle I finally gave Verapamil a try. Wasn't sure to what extent it was working, as my cycle was winding down. I was also using Gabapentin before bed, as most of my attacks are at night, which seemed to help but, again, cycle was winding down. Got my first, minor, attack a couple of weeks ago and immediately ceased alcohol intake and started the Verapamil (120mg IR 3x day) and Gabapentin (300mg nighttime). Since then I have had only minor pain an
    2 points
  12. I have had similar experiences with the same combo of meds. Doesn't stop the cycle for me but definitely helps some cycles.
    2 points
  13. Update number 2. The botox has changed the area that my migraines hurt, they have always been very intense in the eye much like my clusters are just not as intense. Now the migraines are more spread out over and around the eye. A little less painful but still there. I had a three day migraine which is not uncommon for me and it changed sides toward the end of the third day and went away some time in the night. They say that I need to give it 3 treatments before I can make a definitive its working or not so 90 days is the target. The fact that it has changed the pain from intense eye pain to ar
    2 points
  14. It always amazes me how new drugs get through the "rigors" of approval emerging as side effect free only to find out once in "the wild" to be problematic. Confirms that money talks. On the other hand if we never had a new med to use everyone would complain the process is too cumbersome. In the end Ricardo is correct, doctors and other providers need to LISTEN when patients offer serious complaints or concerns. All medications have potential side effects especially if you are on other meds that alter your metabolism. Thanks for the info!
    2 points
  15. .....seems countintuitive ...N20 described as a "potent cerbral vasoldilator" which is just the opposite of what we want. would seem similar to nitroglycerine which can be used diagnostically to precipitate a CH hit.... ...on the other hand....thc is discussed on every CH board i've ever been on.... and while it too is a potent vasodilator, there are folks who swear by its use. though i do not recall as an abortive (yikes, smoking tobacco for me during a hit was damn near suicide)... ....can only wildly speculate that vasodilation throughout body might reduce the pressure on the trig
    2 points
  16. Indomethacin users might be interested in this study that showed guarana to protect against lesions induced by Indomethacin. Guarana is a caffeine containing nut from South America and it is not hard to find. I would not be surprised if the caffeine actually made the Indomethacin more effective as well, but that's just a theory I have... https://pubmed.ncbi.nlm.nih.gov/14669256
    2 points
  17. @Bejeeber Admittedly, there have been very few clusterheads that have tried nitrous as an abortive so as far as working for other people we really don't know yet. But it works damn well for me
    2 points
  18. Jeebs, the Epi proved to be a provoker of Hell for me. Repeatedly! I cut my thumb with Machete cutting corn. It was sewed up no problem. But the 'hand specialist' was an idiot and it took 4 surgeries to fix the mess that he made. Anyhoo, I woke from surgery and was fine. No biggie actually. But, he pumped me full of epi. The hospital was 2 hours from home and they gave me no meds as it was supposed to stay numb for 4-12 hours post surgery. That was not true for me. It came alive in less than an hour and I had no pain meds and a lot of pain. I had 10 hits in the following 24 hours. My per
    2 points
  19. ....thank you for this Ricardo....monoclonal antibodies actually saved my life for another condition.....but it was a trade off, with long term consequences not fully revealed/discussed prior. i would (and might have to) do it again....but INFORMED consent this time.....
    2 points
  20. Hey Ricardo! Are they wanting questions on how prescribed meds interact with MM and such? Questions on which meds are okay with MM and RC? I want to help, but am somewhat at a loss here. The only big one I know of off the bat is the licorice root protocol and MM. What is safe, if anything. Please, give me a bit more to go on. Thanks!
    2 points
  21. Sorry you are having such a rough go with the CH Eli, but glad that some of the best, most qualified advisors possible have been weighing in here so far. From this it sounds like if you were to keep up with the alternative therapy (busting?) every couple months, you could go into some genuinely long term remission, as many before you have? Although personally of the male gender, I have long suspected that the refusal of so many doctors to diagnose females with CH has been based on a self perpetuating medical myth that it is so much more prevalent in males. If you are continui
    2 points
  22. A little update. I was having migraines everyday for about 2 weeks before the Botox. After the Botox injections I had some small headaches but they never got bad and went away on their own. Sunday night I did have my first migraine since the Botox injections. I think it is to early to call it a success, I will keep updating weekly.
    2 points
  23. Glad the verap seems to be helping! I have read about Indomethacin being prescribed as an abortive (to be taken to stop an attack), but I don't think we've seen anyone here (admittedly, not a large sample) who wasn't prescribed it to be taken at regular times each day, in consistent doses, as a preventive. That's the context in which I think the previous suggestions in this thread are offered. Down close to the end of this post -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there's a section about dealing with shadows for CH. Since Indo can be s
    2 points
  24. The Vitamin D3 regimen accomplishes this for many people. So do many pharmaceuticals, including verapamil. But these have side effects, while the D3 regimen, if taken properly, has practically none. I have to say that your CH seems very extreme in the way it comes on, overwhelming you so very quickly with so much pain. I'm sorry -- that must be particularly terrible, even for CH.
    2 points
  25. Hi Eli. Unfortunately most doctors don't understand Clusters, including many Neurologists! Many years ago I was told NOT to take Birth Control because of migraines. And i was also told that women did not get Clusters as well. Well, how wrong that was!!! Many doctors need educating on Clusters. I did HRT with no issue regarding my Clusters. Perhaps let your Gyno know that Clusters are NOT migraines, but are often treated the same because they don't have 'meds' for Clusters, just hand-me-downs from migraine patients. He should let you do a trial run at least. You might get more h
    2 points
  26. ...yeah, stress hormones....i think mainly this one since it is slower but longer acting....but adrenaline and norepinephrine too. Cortisol What It Is: A steroid hormone, commonly known as the stress hormone, produced by the adrenal glands. What It Does: It takes a little more time -- minutes, rather than seconds -- for you to feel the effects of cortisol in the face of stress, says Sood, because the release of this hormone takes a multi-step process involving two additional minor hormones. First, the part of the brain called the amygdala has to recogniz
    2 points
  27. .....ummm....welll.....if you bust every 2 months you might just get that year....and more.... .....i used the triptan zomig nasal spray (5mg) as abort of last resort (carried on person at all times).....no fumbling with needles or injectors....a simple press and inhale. worked better for me than imitrex.....
    2 points
  28. Brad, this might not be very comforting, but you have to consider that your terrible hit was a sign that the busting is working. These kinds of unusually bad "slapbacks" are part of the process for many (or most) people, and they're the best indicator we have that the busting had an effect. I really, really hope that's going to turn out to be true for you. The standard wisdom here is that typically the slapbacks are less bad after the first couple of busts. You seem like a person who would have diligently tried practically everything, but I have to ask along with xBoss about whether yo
    1 point
  29. Cast Iron - he had already used 4 Imgality shots which was the max he can take in a week....and 3 Emgality Shots plus we always have O2 at home ...25 lpm regulater, rebreather mask and M tank. As I said. Both he and my daughter have had clusters for years. We are unfortunately "Pro's" in this area...not that we want to be. They also do the Vitamin D regimen. We went to the ER because nothing was working this cycle. He hadn't slept in a week..the pain wouldn't let him . Sleeping pills wasnt working. He was having suicidal thoughts. He wanted to be knocked out at the hospital with IV B
    1 point
  30. For me the debilitating attacks stop suddenly and without explanation. I have pressure and shadows for a few weeks after. Of course I am always fearful the cycle will start up prematurely
    1 point
  31. @Rod H it definitely hasn't stopped the cycle as I have some transient pain, but it's damn close when considering the alternative.
    1 point
  32. CHF provided the link for Licorice Root protocol, so you have that now. Definitive answers on can you take melatonin with MM, since that is a recurring question. How much Verap can a person be on and still get relief? Currently we think that up to 360 as a daily dose will not block. The straight and skinny on that will help! Like why does x amount block and b amount not block? The 'Why' would be awesome Which of the antidepressants are compatible? Many are on them in some form. This link: has a lot of info that we run with. It seriously needs an update!!! There are
    1 point
  33. ....ok, starting to make sense...pain killer!....was probably going down the wrong road with vasodilation/constriction speculation. unlike opiates, could be n20 is hitting the right pain pathways irespective of blood vessels situation? perhaps weed similar... .....decades of this shit and "i'm still no bloody good at it" (to quote aussiebrian)...sticking around to learn, i wish more folks did...ya never know when the beast gonna morph and different weapons needed....
    1 point
  34. Hi Spiny! Ben's specialty is pharmaceuticals and psychedelics, so anything in relation to that. Questions about which meds are okay with LSA containing seeds, MM and LSD would definitely qualify. Also things like the possibility of serotonin syndrome, what medications have the ability to "block" receptors, and questions about tryptamines in general would all qualify as well. I am not so sure how much he knows on herbalism and things like licorice but a good friend of mine teaches herbalism courses at UMASS so for that I am sure he can give us some good info on it. But I have to a
    1 point
  35. Hi, in India, the homeopaths mix up the medicine themselves. So dont know what it is. But since he's a friend, I will ask him.
    1 point
  36. Thank you for the cautionary tales @xBoss- that is some seriously messed up dentistry provoked hell. And @Ricardo, WOW, somehow I had missed or forgotten along the way the thing about laughing gas being an abortive???!!! I recall being given nitrous oxide as a grade school kid while getting some baby teeth molars removed, and man I was partying! I think it ended up being a serious inspiration for seeking out the party smokes when I could get access a couple years later.
    1 point
  37. ...'twarnt no "implication"...they wouldn't give me pants, they don't put pockets in those shorty gowns, and my ass was hanging out... ....sorry if we're scaring you bejeeber, but note that for me, out of hundreds of cycles, a weirdly triggered hit (e.g. epi, zinc welding) has never started a new one...
    1 point
  38. Jeebs, My recollection is that my daughter's first bad cycle followed a tooth extraction, when she had only had occasional "bad headaches" before that time. The extraction itself was difficult, and for a long time we were blaming the dentist for having caused her CH (which at that time (and for much too long thereafter) was diagnosed as trigeminal neuralgia). I don't remember specifically whether she was having those "headaches" at the time of the extraction, so I'm not fully answering your question, but the shift in severity was very large.
    1 point
  39. ...well...that explains why the arrogant prick anesthesiologist blew me off when i PLEADED with him to forgo the epi for my own "head" surgery...he at least coulda told me the above.... .....good news/bad news from this clusterhead if ya can't talk 'em out of it: did NOT trigger a cluster cycle...did wake up to a one-off 6 hr kip 8+ hit ...you know it's bad when you are scaring ICU nurses.....drained the hospital O2 to no avail and they wouldn't give me triptans.... ....if i was yu i'd keister a Zomig....
    1 point
  40. Hey Aylin, I've left you a message. Check your PM inbox. In the mean time click on the following link. It will download the published version of the anti-inflammatory cluster and migraine headache preventative treatment protocol. If you want to help your boyfriend, get him started on this treatment protocol. It will help control and possibly halt his cluster headaches. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 The following photo illustrates the supplements in this treatment protocol. You can order all of them from amazon and buy most of the
    1 point
  41. Like many CH sufferers I was misdiagnosed for years. I agree with others comments about Imitrex pills. They take too long to work and are for migraine not CH. I asked my doctor for Imitrex nasal blast and was prescribed 20 mg Nasal blasts. They generally work for me unless I wait too long into an attack. I have not tried the injection because I get good relief from Nasal Blasts.
    1 point
  42. ....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....
    1 point
  43. Hi all, Apologies if this is covered elsewhere, but does anyone have a link handy to the most up-to-date version of the regimen? Batch mentioned that a couple updates over the last couple years have been incorporated into what's on vitamindwiki.com, but alas, I can only seem to find the original. Thanks in advance
    1 point
  44. hi Eli, ...i assume this is referring to mushrooms or some other busting substance? ....postponing a cycle would have had me doing the happy dance every day til the next cycle...and i used to have one every 6-8 weeks...even avoiding ONE hit was cause for celebration... ...busting is not a one off deal....folks who bust determine dosage and frequency based on personal experience. if you get 2 months "free" for each bust then your periodicity of busting is evident... ...sorry if i'm missing something...just really puzzled why you would not pursue this further....you are on th
    1 point
  45. It's great that you are getting relief. Carbolitium = lithium; Deltacortene = prednisone. Lithium is a good preventive used for some people with chronic CH. Hopefully you will find the side effects manageable and your doctor will help you find the right long-term dosage. It is generally considered a very bad idea to take prednisone regularly because of its effects on bones and joints, among other things. 50mg/day seems to me like a pretty strong dose. When you say you "tried everything," does that include the preventive vitamin D3 regimen? Does it include high doses of vera
    1 point
  46. Nasal spray is really good when you don’t have anything else. I have had some luck crushing imitrex tablets and dumping them into a Red Bull. Kind of like an Alka-Seltzer.
    1 point
  47. 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
  48. 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
  49. Guys: I expound a theory that the ultimate treatment for the headache cycle lies within the pain itself. I have found the Triptans do cause me re-bounds, but only when in high cycle - also found that there is a point in high cycle when I have to go down in my office at home and let 'er rip. No meds - cold turkey - ice on the head - bang and scream and let the attack run its course. It seems almost like there is a number of attacks in a cycle that you must endure in the purest form of the pain for the Beast to begin to release its bloody talons. However those of you who have let m
    1 point
  50. Well, I know nothing about this myself. Ricardo is probably the person you'd like to hear from. Here's what a ClusterBusters FAQ says about DMT: "DMT (dimethyl tryptamine) is a very potent hallucinogen found in many plants and animals; it’s even present in the human brain. There are a few reports of its use to treat clusters with good success. But this hallucinogen is powerful. Its effects are so intense, bizarre and outrageous, it’s not recommended as a cluster treatment." We're more about cluster headaches here than migraines, although there's evidence that tryptamines work on migraine
    1 point
×
×
  • Create New...