Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation since 12/23/2019 in Posts

  1. 4 points
    Clusterbusters Has Exciting News for 2020 Dear friends, For nearly 20 years, Bob Wold has managed Clusterbusters as a volunteer. He takes our desperate calls in the middle of the night, answers emails, travels, organizes, and sacrifices time with his family in order to ensure that every person living with cluster headache has the best life possible. His efforts in education, driving research, and support are unprecedented and unparalleled. In addition, Bob has held a regular job to help support his family. He does all of this, likely working 80 or more hours a week in total, with so much kindness and without complaint. He also lives with the same crippling disease that we are fighting to eradicate. We are living in a special time in the headache community. More attention is being given to research and to our disease. We have received tremendous support from the research community and even more amazing support from our own patient community. It is time for Clusterbusters to make a change. We have a growth opportunity, but we need to focus. Consequently, Clusterbusters is proud to announce that we have asked for and received Bob's resignation from our board of directors. He is no longer our president. Instead, we have hired him as our Executive Director. He will now work under the direction of the Board of Directors full time to carry out the mission and vision of Clusterbusters that he developed in the early part of the 2000s. As the position of President of the Board has been vacated, I have been asked to serve as the President and I have accepted this position. I am so proud to be able to continue to serve this community that has given me so much. Thank you all for your support. As you may know, we have added Ainslie Course to our Board of Directors. We are excited to include her as this will help us to grow and expand our reach. Thank you, Ainslie, for adding your talents and light to our community. We will be continuing to grow our amazing organization. We are so proud of Bob Wold, those who came before us, and all of the accomplishments of Clusterbusters, and we are looking forward to helping to shape a better future for everyone living with cluster headache. Sincerely, Eileen Brewer President Clusterbusters Connect with us ‌ ‌ ‌ Clusterbusters | P.O. Box 574, Lombard, IL 60148 Unsubscribe dennispohlenz@yahoo.com Update Profile | About Constant Contact Sent by eileen@clusterbusters.org in collaboration with
  2. 4 points
    I heard that only worked if you boofed it @Rod H!!!
  3. 3 points
    Klasterman, I appreciate that you're pain free, but cure it is not. Every week now it seem someone is coming here claiming a cure. Being in remission is not cured. Sounds like your cycle stopped. Again I'm happy for you, but you're like the hundredth person that have claimed a cure and none have actually been proven a cure. CH is an abnormality in our brains, the hypothalamus. There really is no cure without making a change to the hypothalamus.j You'll find that claiming a cure when you only have 3 days pain free is going to put people off. Oh my gosh. I just read that article and I'm cracking up. (sorry, I'm still glad you're pain free, but it has nothing to do with some pressure point, or a plastic device you press on your torso.). Since both those links are selling a supposed cure... I'll have to remove the links. If you have links to something legitimate that isn't selling a cure, they are welcome. PFW, J
  4. 3 points
    Rod H

    K Cure for Cluster headache?

    Yes there is. its 5 grams of ground unicorn horn mixed with 1 gal of saber tooth cotton tail blood stirred with the tail feather of a yellow breasted twit drink 1 once ever hr till gone.
  5. 2 points
    Dallas Denny

    New to the group

    Agree with the minimalist approach @MRUPE! Although I highly recommend the D3 regimen solely bbased on the "anecdotal evidence" that I've witnessed as it was being documented over the years, I don't personally use it.....when I got here 10 years ago I committed to "busting" as a treatment and didn't want to "muddy the water" by adding the D3 and then not knowing for sure which strategy worked!! When I got here I viewed clusters as a curse but thanks to this place it's become an annoying inconvenience! DD
  6. 2 points
    CHfather

    Taurine

    When the great tommyd created the first Clusterbuster Files entries back in 2010, he wrote that there was an "ongoing debate" about whether the taurine has an effect, or whether it's just the caffeine that is impacting the attacks (or shadows). I don't think that debate has been resolved, since some people get good results from caffeine alone, and I'm pretty sure that the V-8 energy drinks that some people prefer don't have taurine in them. Some people even think it's the niacin in those drinks that helps, more than the taurine. So if by "just a taurine supplement" you mean taurine alone, without caffeine, I suspect -- but can't say for sure -- that it would be ineffective. I know that some people have taken taurine pills and caffeine pills, but don't ask me why, or how helpful it was. (I'm guessing that the reason that the Red Bull doesn't make you shaky is that the 8 oz. version has roughly the same amount of caffeine as a cup of coffee, about 80mg. A 5-Hour Energy shot has 215mg of caffeine!)
  7. 2 points
    spiny

    Our fearless leader has a new title!!

    That is the best news of 2020!!! Bob is a saint when it comes to CH. And our Fantastic Leader. Congrats to Bob, Eileen, and Ainslee! All great people in our midst.
  8. 2 points
    @Banjer Taylor welcome to the forum! I too just recently joined in july. I was very fortunate to obtain oxygen pretty early on. It was very challenging. Not so much to get the script, but to find a place that actually provides the tanks. I got the proper mask from cluster02kit and it works very well. I’m still learning the proper breathing techniques and everything. I got on the D3 regimen a month after I started feeling terrible. I still get a lot of shaddow pain and I’m sure the D3 has helped tons. I take extra fish oil to help with the depression. My next step is to try busting with mm. I would read up on that if I were you. I would absolutely put all your focus on getting that oxygen. It’s imperative to abort the attacks. You’ll hear back from more experienced members soon. @Batch has all the answers for the D3 regimen. take care Kat
  9. 2 points
    Brain on fire

    Great news about my O2!

    When I was pre-oxygen in high cycle chronic I got hit one evening. I made it to my car to drive myself to the ER, realized I couldn't drive & the ER was futile. I sat in my car screaming & periodically banging my head on the steering wheel until it ended. So happy to be starting a new year with those days and nights behind me! Thank you clusterbusters!
  10. 2 points
    Racer1_NC

    Great news about my O2!

    There are many things I worry about. Starting a car with an O2 tank in the trunk isn't one of them. I carry a smaller D tank in my vehicle. It's in a carrying sling with the regulator attached, tank valve off. I wedge it partially under the drivers seat from the rear so it doesn't move around while driving. It can be ready to use in 30 seconds.
  11. 2 points
    CJW

    Merry Happy Pain Free Days & Nights

    thank you. two months so far. yay for me.
  12. 2 points
    https://drive.google.com/drive/folders/1LIQTMO8yOudikkmJ1Wpi0GoEjn9Y5e_D?usp=sharing_eil&ts=5dac9336
  13. 1 point
    Jost

    New to the group

    I just moved about 40 miles away from my current doctors and am going to change. When I lived in this area before the nurse practitioner I went to was much more open minded. She's narrowed her patients down to a specific category but has another one in her office I'm going to try who I hear from sister in law is like minded. We'll see about oxygen and other topics. Perhaps I should venture onto the other boards on here.
  14. 1 point
    Brain on fire

    New to the group

    @Jost sharing is contributing! You may want to try LSA. Most here use RC seeds. You may want to start a new topic in a closed forum for any questions rregarding them. I am formerly chornic & pain free because of the anecdotal methods here. You probably already know this is a great community. Hang in there, we'll be here.
  15. 1 point
    Brain on fire

    Taurine

    Ooooo I ate a lot of Pom when I was training, friend had a tree. Just for the taste, slurp one up for me Kat! Hope it helps you & does the tummy good. Oh how I disliked the taste of the energy shots, but after a few minutes of slobbering, tears etc all mixed up in the pain & o2 blender... I didn't notice any taste. Hope you get pain free soon @kat_92
  16. 1 point
    kat_92

    Taurine

    @spiny thanks! I may need to try the v8 because Red Bull’s have been making me sick
  17. 1 point
    Klasterman, Sorry, but you've been banned. I don't take something like that lightly. I think maybe 3 in the entire time I've helped with this site. Being just plain hateful to anyone here is not acceptable. Your cure is not a cure. That's simple fact and sorry if I came across strong in my earlier post. I'll leave your content for a few days then delete. Good luck to you. That's not sarcastic, I truly hope you can reflect and grow. Cheers, J
  18. 1 point
    There is no known cure for cluster headaches. Indicating one exists is insulting & misleading.
  19. 1 point
    Brain on fire

    Verapamil and stomach upset

    Agree with @jon019 re constipation. I'll add movement also increases motility. @igdc if you are having pain without constipation get thee to a doctor!
  20. 1 point
    EyecePick

    Emgality

    Emgality is a preventative, sumatriptan is an abortive. They're meant to be used together (as long as your neuro says its okay). They work with different mechanisms...so you can continued to sumatriptan as needed as an abortive
  21. 1 point
    CHfather

    Emgality

    I've seen a few saying 75mg 3/day (225/day total) would be the high dose.
  22. 1 point
    Pebblesthecorgi

    What if there WAS a CURE?

    Four hours of typing to say nothing. The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”. Being withholding and secretive is the stuff of attention seeking and manipulators. Folks with quality information are generous and forethcoming. Batch set the standard for this and many others have done so to a lesser degree . I am happy you have resolved you CH issue but it seems you have other things to work on.
  23. 1 point
    Psiloscribe

    Saints & Miracles

    Let' stay on topic shall we? Bob
  24. 1 point
    spiny

    Risk / Dangers of Oxygen?

    CHF has all the great links for anyone here. He is great at providing that input to our members. The D3 can begin to work quickly for some. Like seeing results in the first week. Others can expect to have a reduction in about two weeks from what I have read here. The loading really gets your D up quick and that is what many need. It is known for stopping Ch for some and reducing the max pain level and slowing the ramp up for others. Most will take either with a big smile. Pain Free is the best of course. Take all your papers and push for your O2 even if you feel better now. Then you will be prepared if you need it again! ATB!
  25. 1 point
    Batch

    Vitamine D3

    Hey Virrr, Thank you for the feedback. Having CH return after an initial pain free response to the anti-inflammatory regimen is not uncommon and easily fixed. It happens to roughly 5% of CHers starting this regimen. What has likely happened is you've burned up available cellular concentrations of magnesium that's needed to hydroxylate (metabolize) vitamin D3 to its genetically active metabolite 1,25(OH)2D3. The simple fix is stop taking vitamin D3 loading dose for a day or two and double the magnesium dose to 800 mg/day split 400 mg in the morning with breakfast and 400 mg with the evening meal. When you restart the loading schedule, continue taking 800 mg/day magnesium through the 12th day of the loading schedule, after which you drop the Vitamin D3 dose to an initial 10,000 IU/day maintenance dose and the magnesium back to 400 mg/day. Doubling the Omega-3 fish oil can also help while on the 12-Day accelerated vitamin D3 loading schedule. VocTeacher is spot on... Vitamin K2 also helps. If this doesn't get you back CH pain free, add 500 mg/day Quercetin. It helps activate the vitamin D receptors (VDR) that are needed to continue the genetic expression that prevents CH. If that doen't work, you may have picked up an allergy to something in your environment or diet. Allergies release histamine in such large quantities, they make nearly all forms of CH prophylaxis ineffective. In this case, see your local chemist for a first-generation antihistamine like Diphenhydramine (Benadryl) and take at 25 mg every 4 hours for a week to ten days. Second- and third-generation "non drowsy" antihistamines don't work as well as they cannot pass through the blood brain barrier to block histamine H1 receptors at the genetic layer. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg Diphenhydramine as you walk through the door and another 50 mg at bedtime. Regarding the placebo effect... it happens with all forms of cluster headache prophylaxis not just vitamin D3. As the raw efficacy of the anti-inflammatory regimen is 52% for a sustained pain free end point response and 80% for a significant reduction in CH frequency (an average of 3 CH/day down to 3 or 4 CH/week), both are well beyond the highest reported placebo response in CH of 14% to 43%, the lowest value was reported using the strict endpoint; cessation of headache attacks. (Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.) Even if it was a placebo effect... you're still pain free so who cares... If you're the curious type and want to know for sure if this regimen is effective in preventing your CH or if it's the placebo effect... wait until you've been CH pain free for at least 2 weeks then stop taking this regimen... If you're like me and many other CHers, your CH will return in 3 to 4 days and could take as long as a week. When the CH returns (and it will), restart this regimen with a couple days at a 50,000 IU loading dose then drop back to your maintenance dose of 10,000 IU/day. This will get you back CH pain free in a day... two days tops. I realize this sounds like a silly thing to do, but it will accomplish two things. (1) It lowers the probability it was a placebo effect and (2) more importantly, it will give you confidence this regimen is actually working to prevent your CH. When you've completed 30 days on this regimen see your PCP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. If there are any questions about these lab tests, give your PCP/neurologist a copy of the anti-inflammatory regimen CH (and Migraine) preventative treatment protocol from the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 When you have these lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link. We need results from CHers like you to convince neurologists this regimen is a safe and effective CH prophylaxis. http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks again, take care and please keep us posted. V/R, Batch
×