Jump to content

Leaderboard

  1. jon019

    jon019

    Advanced Members


    • Points

      32

    • Content Count

      716


  2. CHfather

    CHfather

    Master Members


    • Points

      26

    • Content Count

      5,661


  3. kat_92

    kat_92

    Advanced Members


    • Points

      20

    • Content Count

      373


  4. spiny

    spiny

    Moderators


    • Points

      16

    • Content Count

      3,613


Popular Content

Showing content with the highest reputation since 05/12/2021 in all areas

  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 Mr Watts, So good that you have found this forum, too bad that you’re now part of the family. I live in the Netherlands too and there are a couple of things you can consider already. Get a prescription for verapamil as a preventive as long as you do not have O2. O2 is the safest and quickest abortive, but also get some Sumatriptan as an abortive if O2 is not working anymore or the attack is just too severe. If I were you I would change to another neurologist. Mine is Dr. Couturier of the Boerhaave Clinic in Amsterdam who is an expert in this field of CH in the Netherlands. He has he
    4 points
  3. 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
  4. 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
  5. 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
  6. 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
  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. .....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.....
    3 points
  9. Thanks! I felt very prepared to go to the appointment with all the knowledge I've learned from these forums! Neurologist was knowledgeable and helpful. Happy to write a prescription for high-flow 02 and asked the staff to start looking into supply and insurance. She also gave me Rx for 2% viscous lidocaine - and she pulled up the ClusterBusters website to show me where to find instructions how to use it intranasally! And gave me samples and Rx for Sumatriptan injection. And she will increase Verapamil if needed. Since I've never had an MRI, she suggested I could do that with a focus on th
    3 points
  10. 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
  11. 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
  12. 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
  13. .....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
  14. 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
  15. @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
  16. 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
  17. ....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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. .....yup, ya gotta learn to play mind games.....during a hit i used to focus on the cigarette i was gonna have after.....it was always the best smoke and one of the better distractions to get me through. quit smoking 8 yrs, 5 days, 4 hrs and 12 mins ago......but i don't miss it.....REALLY!
    2 points
  25. 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
    2 points
  26. Thanks, I definitely want to get the O2! Here's the page she pulled up on lidocaine nasal: https://clusterbusters.org/resource/home-instructions-for-intranasal-lidocaine-sphenopalatine-ganglion-block/
    2 points
  27. Huge fast breathing worked for me yesterday! I've been in a cycle of attacks for 12 days, taking Verapamil, and asked to get prescription of O2 but doctor said they don't prescribe that. (Going to see neurologist today to see if they do.) I started getting a daytime attack yesterday morning, and started "hyperventilating" if that's the right word - taking huge deep breaths, sucking air in and pushing it out rapidly, to try to mimic what I've seen people post about using O2 for attacks. Attack aborted in about 5-10 minutes. Started coming back half hour later, so I did the breathing again,
    2 points
  28. I don’t think the vaccine itself will worsen a cycle. I do believe other states of inflammation will mitigate how bad a cycle can be. The injections do incite an immune response which is variable between individuals. The second shot seems to bring on more symptoms in people who have reactions. It’s even worse in folks who had the virus and chose to get the vaccine. I do think its worth considering the vaccine because COVID itself releases such an aggressive immune/inflammatory response it’s bound to exacerbate a cycle or make a chronic more miserable.
    2 points
  29. @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
  30. I'll admit, I have a bit of a fear that the attempt to increase trust on these drugs by not talking about and downplaying the risks could seriously backfire. It doesn't matter how great the meds are for some, if they produce enough life threatening reactions there will be a push to remove them like they removed the Fen-Phen drugs. When public perception of the drug goes from "barely any side effects" to "it might kill you and people have known this for years but we won't talk about it" it gets attention. If it happens too quickly it sets us up for a huge public backlash on these drugs
    1 point
  31. 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
  32. Hi Vipul, would you be able to post the ingredients and their strengths (like 2x, 3x etc.) for the homeopathic meds you were given?
    1 point
  33. 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
  34. ...'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
  35. The times that sumatriptan pills work for cluster is when you are in cycle where you know that you are going to get hit at a certain time and can take it an hour beforehand. I have warded off more night time hits than I can count by taking a 100 mg sumatriptan pill before bed. -Ricardo
    1 point
  36. @BejeeberI'm not so sure about triggering a cycle or not, but pretty much everything that dentistry has and does triggers a serious cluster for me. But something that might be looking into as an option is nitrous oxide. I have been getting nitrous at the dentist for the past 4 or 5 years and never once had a cluster break though. It has been successful enough as an abortive that I got a whipped cream maker so I could take nitrous at home and it has been unbelievably helpful. I know a couple times it has kept me out of the ER. -Brendan (AKA Ricardo )
    1 point
  37. 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
  38. Thank you for that highly pertinent report from the trenches Mr. jon! If I could knock out an epinephrine induced one off hit with a triptan while not triggering a cycle, I'd consider that a big win. It sounds like in your scenario that when you came to, the attack may have been well underway though, with no chance to catch it near onset.....
    1 point
  39. 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
  40. ......never made any difference either way....would quit during cycle, between cycles...sometimes for months. the only direct effect i could ever discern was smoking during a hit was nucking futs....would raise a hit level exponentially. counter intuitive as far as i was concerned. as nicotine is a vasoconstrictor and shoulda helped. of course, there are 999 other nasty components that must be considered....
    1 point
  41. 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
  42. Hi everyone, I hope you're all doing well... I just wanted to share something with you. I have been suffering with clusters now for around 15 years or so and, thankfully, I did not have any cycles during 2020 but they kicked in for me this year on Friday last week (30th April 2021). I was prescribed Verapamil previously, in 2015/16, which has actually worked really well for me in the past but always takes a good few days to take effect - Luckily, I had a supply stored away so I started with them straight away on Friday evening and have been taking them daily, morning a
    1 point
  43. Hey @Cast Iron Wow - thank you for this information! I’m going to see if my Huisarts can refer me directly to Dr. Courtier and will take it from there. Much appreciated. Great to have connected with you - I’m in Amsterdam too but have yet to meet another cluster head. Hopefully that will happen one day in the not too distant future Will report back on any success - fingers crossed.
    1 point
  44. https://apnews.com/article/ann-arbor-plants-featured-ca-state-wire-mi-state-wire-b0ce69ca0961c150e0f900e8ea4cf432
    1 point
  45. Many people get good relief from the nasal spray. If you get the injectable, you can divide it into two or three doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
    1 point
  46. I have taken the liberty of pasting Matt's original, longer post here. Quite a coincidence that two people show up on the same day with this idea that is new to me (but maybe not to people who have been around longer than I have been), but I'm anxious to see where it goes. >>>>>BEFORE YOU READ I AM NOT A MEDICAL PROFESSIONAL PLEASE SPEAK WITH YOUR GP BEFORE TRYING ANY TREATMENT OR MEDICATION!!! Hi everyone I have had cluster headaches for more than a decade. And for all of this time I have been searching for new drugs to abort my cluster headaches. The drug has
    1 point
  47. Hi. Name's pronounced 'Rori'. I battled unremittant chronic CH with upwards of a dozen distinct hits per day from mid 2011 through fall of 2017, and can happily say that I have had nothing but light shadows since my old hippy mother found the Busting method here and my somewhat sketchy connection came through for me. At the time of the attacks I had worked to convince myself that what I was experiencing was a mild form of the disease -- only after they faded from my life did I understand what I had simply grown accustomed to. No, wanting to trepan ones self to stop the pain is not
    1 point
  48. I believe (opinion only) if a clusterhead needs surgery there are a few things you can request that can minimize attacks. In fact it possible that some anesthetic agents may help treat clusters. The literature on this is spotty and clinical reports are few but based on fairly decent response to psychedelics and the imputed mechanism of action certain anesthetics possess its not a big leap to speculate on what is the "best" mode of anesthesia if you require it. Again this is mostly based on speculation and personal experience. Be careful how you approach an anesthetist because if you ac
    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. I-J, I'm not sure how to reply to this. By "plant extractions" do you mean psychoactive substances? If so . . . they can be effective as an abortive during an attack (a cluster headache attacks, at least; I can't say for sure about a migraine), but they're commonly used to prevent future attacks rather than to abort attacks. I have no idea whether tryptamines would have the same effect on her as triptans. No real reason I know of to think they would.
    1 point
×
×
  • Create New...