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  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
    Brain on fire

    Taurine

    Oxygen is an abortive, not a preventative. I understand using it while on the job could be problematic with your profession. If you are comfortable speaking to your employer about it, maybe that can be worked out. Just sending some random ideas because I don't like to see anyone in pain when they have the tools to stop it.
  6. 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
  7. 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!)
  8. 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.
  9. 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
  10. 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!
  11. 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.
  12. 2 points
    CJW

    Merry Happy Pain Free Days & Nights

    thank you. two months so far. yay for me.
  13. 2 points
    https://drive.google.com/drive/folders/1LIQTMO8yOudikkmJ1Wpi0GoEjn9Y5e_D?usp=sharing_eil&ts=5dac9336
  14. 1 point
    senya

    Does nasal spray work for you?

    Hello im a new member here. I have been suffering from CH for over 10 years. Usually get CH in spring and fall that lasts for about a month. I usually stay away from any prescription meds due to their cost and because they just make next headache worse. Recently I had a bad flu that triggered nightly clusters. Since I had runny nose I started using nasal spray to clear out congestion. So one night I got up with a really bad CH and went to clear my nose and used over the counter nasal spray. Approximately 15 minutes later headache was gone and I quickly fell asleep. I never had any medicine act so fast against CH. I have been using nasal spray to fight CH for past 2 weeks and it worked everytime. Sparay that I use contains regular dose of Oxymetazoline. So Im just curious if this method worked for someone or maybe it will help you too if you havent tried it yet.
  15. 1 point
    As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true. Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about. Psilo will be an official "med" within a few years, you can bet on it. The D3 regimen, which is supplements but not "meds," has helped people who are in that same premier league as you, and who are actually chronic as opposed to be said by their doctors to be chronic. Overall, I think you are putting much too much reliance on things your doctor says and beliefs that you have adopted. As jon' says (or suggests), your doctor is letting you kill yourself with triptans, and overuse of triptans is shown to make attacks worse and cycles longer. I think you might be in a situation where what you think is helping you is actually making things worse, causing you to then use more of it and continue the cycle. This also doesn't make sense, at least to my way of thinking. Chronic is chronic. If you have time off from attacks, you're not chronic. It doesn't really matter for treatment purposes (except, for example, that lithium is usually recommended to be prescribed only to chronic patients because the rebound attacks if you stop taking it are so severe). Prednisolone is what prednisone is metabolized to by the liver. The dosage and duration you're taking of prednisolone are essentially the same as they would be with prednisone, and the effects seem to be about the same. Prednisolone is generally more expense. It's primarily the caffeine in RedBull that seems to be beneficial for aborting or reducing a CH attack. Many people use sugar-free versions of energy drinks with good effects. But if RedBull increases the severity of your attacks, then it's clearly not for you. (It's very unusual for that to happen.) I have to wonder whether your O2 system is optimized. Do you have a flow rate of up to 25 litres per minute? Are you using an effective mask? (at the least, a non-rebreather mask, but better would be the mask specifically designed for people with CH). Is it O2 from a cylinder or tank (not from a "concentrator")? Are you breathing deep, holding, and then expelling all the air you can from your lungs? Fully effective O2 is the key to better treatment of your condition, in my opinion. Sandomigran is indeed a somewhat effective preventive, but it's low on the list of recommended prescriptions because of the side effects. You probably arrived at all this by trying a lot of things that didn't work, so, again, if it's what you choose, it's what you choose, and we can all hope that the dike will hold for you. I'll say again that if you can get your O2 working better, you'll have the option to consider alternatives to this and all those (other) triptans you are using, and I think that might be a good thing.
  16. 1 point
    Luis

    Stomach pain while on d3 regimen

    I don’t think it was the emgality, and since almost nobody is having this problem. I am inclined to say that I was not eating healthier. I will try the d3 again since it was helping me sleep. Once my stomach feels better, I will give it another try splitting the vitamins in the morning, afternoon and evening. I don’t want to give up on it because emgality is expensive and I still feel the headaches there while on emgality only. I will keep y’all posted.
  17. 1 point
    CHfather

    Great news about my O2!

    M-60 takes a 540 regulator. It's a fairly big tank, weighing more than 20 pounds empty (an E weighs about 7 pounds empty).
  18. 1 point
    If you are going to pursue a neurologist for verapamil you might consider a boost dose of steroids to help break the cycle. Verapamil is generally regarded as a preventative rather than a cycle buster. They can suck but they can be effective in getting you some rest and may arrest a cycle
  19. 1 point
    It would be good if your post was clearer regarding what you choose to cut and paste and what you independently write. Properly referencing content gives the originator proper credit and allows the reader to understand what is regurgitated, what is the writer opinion and what is someone else's contribution. Links are posted in the initial post but the text is unclear what is source material and what the originator actual wrote. Ketamine has been suggested and used as a treatment for cluster headaches. No reliable protocols have emerged for treating cluster headaches. The fractured statements in the original post is basically a bunch of gobbly goop intended to entice the reader to click away. The use of ketamine in the treatment of certain psychiatric disorders has been popularized recently and "ketamine clinics" have emerged, some good (and ethical) most I suspicion are not. Since there are no proven protocols for the use of ketamine in treating cluster headaches its use to treat cluster headaches falls into the category of self experimentation and anecdote. I would also suggest that anyone using a psychoactive substance daily (with or without a float tank) has a serious or evolving psychological issue that should be address rather than promoted or admired.
  20. 1 point
    jon019

    Turkey Dinner Remission Thinner?

    ....have never noticed any connection over the years but did develop a turkey allergy following chemo...allergies create inflammation which is the enemy of stasis...upping the D3 sounds like a good plan...along with some Benadryl...Batch speaks eloquently about this...seems yur already on the regimen so check his advice on dosage..... best jonathan
  21. 1 point
    There is no known cure for cluster headaches. Indicating one exists is insulting & misleading.
  22. 1 point
    Brain on fire

    Emgality

    If Emaglity works as a preventative, an abortive won't be needed. Sumatriptan has caused increased intensity, duration, frequency in many & several reported going from episodic to chronic due to using it. Which is why we recommend oxygen over Sumatriptan everyday.
  23. 1 point
    "We're all just walking each other home"...Ram Dass Rest in peace just doesn't seem appropriate so I'll just say safe travels and happy trails.....and Thank you!! DD
  24. 1 point
    FunTimes

    Does nasal spray work for you?

    I know that some of the prescriptions are manufactured in a nasal spray form and work much better and faster then in pill form and injections working the fastest but I have never heard of a over the counter drug in any form abort a cluster. What is the brand yo are using? Maybe someone else will have more information for you.
  25. 1 point
    MgGal

    Gammacore/electrocore

    SpineBob If there is a way to send me the photos and instructions of how you reset the GammaCore I would be most grateful. I had it for 30 days, worked to abort migraines.... THANK YOU.
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