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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
    Dallas Denny

    Upping D3 intake

    https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  6. 2 points
    @20yearslater welcome! This is my first time with Ch as well (started in July). I had very dull headaches for 3 months at a time and then they went away for 3 years! And then BAM. Back again. So I am thinking they are getting worse over time. I would start the d3 regimen! It’s a lot to type out but search for the info in the bar and you’ll find all the info you need. Many people have success with that. I have avoided sumatriptans because I’ve heard they can make cycles longer and more intense. That might be why your headaches are coming more frequently....or the cycle is just ramping up. It’s hard to say. Typically people with O2 use that as a first line of defense and the sumatriptans are used when O2 is not available ( in your case bring them to work!) I hope you find the forum helpful. I’ve gotten more help here than from most doctors I’ve seen (5 neurologists at this point...scary how ignorant they all were) good luck! Kat
  7. 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.
  8. 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
  9. 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!)
  10. 2 points
    Rainmaker

    Amazon Smiles

    I just switched my Amazon Smile account recipient to be Clusterbusters Inc. Thank you for all you do for us.
  11. 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.
  12. 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
  13. 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!
  14. 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.
  15. 2 points
    CJW

    Merry Happy Pain Free Days & Nights

    thank you. two months so far. yay for me.
  16. 1 point
    I'm sorry I don't have more to offer you. It sounds like you have been sensible about what you have chosen, given all the factors you have described. I'm going to quibble with you about two things, if only for future reference in case the dike springs a leak. If you do the D3 regimen while everything else you're doing to treat your CH is the same, and you feel that your situation has improved, you can at least tentatively attribute the improvement to the D3, and begin seeing what happens if you reduce some of the other meds. It's not the best situation to be in to play with something that is working, but over the longer run it will be greatly beneficial to you if a more natural, less damaging approach such as D3 works as well as the pharmaceuticals you are using. (I do understand that the "long run" isn't very interesting when you're risking severe attacks right now, so I'm only offering this perspective.) (It's a strange thing about CH. I was talking just the other day with a fellow who was in remission for a couple of years, which he attributed to the 1200mg of verapamil he was taking every day. At some point, a doctor told him it was going to be very bad for him to keep taking that much verapamil, so he started to lower his doses. As he lowered them, the attacks didn't come back. He's been off all verapamil for several years now, and still hasn't had an attack (full disclosure: he does have shadows every day). I am not saying at all that anything like that could be the case for you. I am just saying how much we don't know about what is actually helping and what isn't.) Second, I have no desire to convince you to use any substances you don't want to use, but I don't think we've seen anyone here whose life has been taken over by psilocybin and other substances used to treat CH, in the way that addicts' lives can be taken over by "hard" drugs. If you were some day to try this, a substance like rivea corymbosa seeds can treat CH without even giving you any kind of "trip." Since you live in a place where some recreational drugs are legal, you might have seen more "hard cases" associated with psilocybin than I imagine there are . . . and of course the leap of faith to stop the triptans and try "busting" would have to be enormous for you. For some, it has been a "leap of desperation" more than a "leap of faith," and I hope you don't ever get to that desperation point. (I guess this is a question regarding O2. I'm sure you have thought of this, but I just want to make sure it's said. As a big strong guy, you might well have very large lung capacity. If you are using a proper breathing technique, perhaps even hyperventilating, I can imagine that you sometimes have to wait for the bag on your mask to refill before you can take another full, deep breath. Really, that is the standard for flow rate -- can you use the best possible breathing technique without having to slow down or modify that technique because there isn't enough flow to the bag. If this is an issue for you, then you would want a flow rate even higher than 25 lpm. We have seen some highly fit people need flow rates of 40 and even higher to keep up with their lung capacity. A demand valve system is particularly valuable in a situation like that.) My best wishes to you. My father came to the US from the Netherlands when he was a boy, and Dutch, not English, was the language spoken in his home here in the US. I'm sorry to say I never learned any, but I do still feel an affinity toward folks from my ancestral home.
  17. 1 point
    Welcome 20yYL! Triptans can be a life saver. They can be really bad too. Normally, you do not take more than 2 6mg in 24 hours! You can split the dose though. Type something like 'splitting triptans' into the search bar and you will get several threads to look at. Where is your pure O2 from a tank? That should be your first line of defense! No bad side effects and it works quickly. Like triptans, it does not prevent the next one. But O2 won't destroy your body either and that is a definite plus! And narcotics really don't help with CH! You can take a lot and it will not help most, if not any patient! I was having a scope, under sedation and OUT when I got a hit. They had to give general to finish the scope! Talk about shocked docs, they were! They did have the O2 for me and I killed it as soon as I woke up.
  18. 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.
  19. 1 point
    I hope that you found the 'cause' for you. 'Cure' is a bad word to use though. Too many have tried several methods of exercise and while it helps, it is not a 'cure'. Actually, most CHers' shy away from any stated 'cure' they read. And for good reason. CH can morph and will morph over time. You may get 2 years PF status only to have it return - again and again. Several members have been very shocked when they have a ten year remission and it still comes back. It is a very rude awakening. Stay PF and be happy. I am glad that you found something that works for you!
  20. 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).
  21. 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
  22. 1 point
    https://drive.google.com/drive/folders/1LIQTMO8yOudikkmJ1Wpi0GoEjn9Y5e_D?usp=sharing_eil&ts=5dac9336
  23. 1 point
    Psiloscribe

    Gammacore/electrocore

    Just a few comments on the gammaCore device. As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost. The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery. So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching. The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%. It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community. Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community. When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down. Peace out~ Hope everyone has a great 2019 Bob
  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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