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Showing content with the highest reputation since 12/27/2019 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
    signals61

    HI

    Hi Newbie, I have a similar history in that I experienced my first attack at the age of 19 (I'm 58 now), I was in the Army and the Army docs had no idea what they were dealing with so they just injected me with Demerol or Morphine to kill the attack. Didn't get diagnosed until roughly 4 years ago. I have what is referred to here as episodic attacks, usually once a year, lately twice a year. The attacks last about 45-60 days. Thinking back, I may have managed a year with no attacks, but it's hard to remember that far back. My General Practitioner initially prescribed Sumatriptan in pill form - this "worked" but took almost as long as the attack would last. After a couple years, I finally found a Neurologist and he prescribed Sumatriptan in injectable form. This is the single best treatment I've found to date, though with some side effects (more on that later). My Neuro also prescribed Verapamil as a prophylactic (preventive) measure. I took it for about a year before giving up on it, since it didn't prevent further attacks and I am already on another medication for hypertension (Atenalol) I'm currently using the D3 Vitamin regimen discussed at length on many posts here. I can't say if it works yet, since I started it at the end of my last cycle, but I'll keep it up until I feel like its not worth the trouble. Most everyone here talks about oxygen as an abortive measure. As I write this, I'm going through the process to source all of the components for that treatment. I have a strong belief that it will help, just based on how well I know my own body and all the positive stories here. Getting oxygen is a pain. I got my GP doc to write me a prescription without much trouble at all (a lot of people here talk about that being one of their biggest challenges), but that's where my challenges began. I took my prescription to a local medical supply, long story short, they refused to fill the prescription. I even offered to self pay, but it was no dice. I'm calling around today and hope that Airgas will help, but if they won't, I found a source on amazon for an industrial tank, prefilled, and I can go to Tractor Supply or the local Farmers Co-op to get it refilled. I talked about side effects with Sumatriptan - know that this drug is a powerful vasoconstrictor. That's what relieves the pain in the head, but it also gives me a heavy pressure feeling in the chest as it increases blood pressure. Constriction of arterial vessels increases systemic vascular resistance, which leads to an increase in arterial blood pressure. Constriction of venous vessels increases venous blood pressure and increases cardiac preload and cardiac output, which increases arterial pressure. All of this is not really good for an overweight smoker in his late 50s. I won't give up the Sumatriptan, but I've taken a couple of steps to help. First, I talked to my Dr. about prescribing a vial instead of the preloaded autoinjectors. Many folks here believe we don't really need a full dose to get relief. So, I'm hopeful this will help. It also means I don't have to hoard as much of the drug during my off cycles so it lasts through the attack season. (Insurance company only allows for about a dozen injectors per filling, so I make sure to buy all year long so I have enough on hand when attack season starts. Second, as mentioned above, I'm getting oxygen. Other things that help - everyone is different, your mileage may vary - Caffeine - energy shots or coffee. These can make things a little more bearable, but its not always helpful since most of my attacks happen at night when I'm trying to sleep or get ready for bed. Sleeping in an elevated position - I sleep in my easy chair during attack season. Sometimes I can get through the night, sometimes not. I find a nice long hot shower to be helpful when nothing else is available. I avoid alcohol during the attack cycle. Any amount can trigger an attack, within 30 minutes of the first drink, like clockwork. I've talked to a few folks here who share the same experiences as me, high stress is good to prevent the attacks, relaxation brings them on. Strange, but true, at least for me. This leads to my attack cycle being very exhausting. When the cycle ends, I sleep for days just to get caught up. I hope you find my story helpful and you find relief.
  6. 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
  7. 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
  8. 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.
  9. 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
  10. 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!)
  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
    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.
  17. 1 point
    Welcome..glad ya found us... OXYGEN!!!???.....
  18. 1 point
    Batch

    New to the group

    Nice try... You'll see the name soon enough when recruiting starts. Until then, my lips are sealed. I don't want any goon squads from Big Pharma screwing the pooch.
  19. 1 point
    spiny

    Taurine

    They have great flavors Brain! Currently running on the new coconut/pineapple flavor here. It is very lightly flavored compared to the Mango or Pom mix!
  20. 1 point
    Brain on fire

    New to the group

    Low (threhold dose) psilocybin. I'll start speading out my doses soon. I couldn't take hypertensives, prednisone, D3 etc & went in knowing my choices were limited. I did a lot of reading, asked a lot of questions & received an enormous amount of support.
  21. 1 point
    Brain on fire

    New to the group

    Hello again @MRUPE I'd noticed in your 1st post here you weren't opposed to anecdotal evidence because you took the meds you'd been prescribed in the past. Often people aren't aware meds they are prescribed are used based on anecdotal evidence. I am a minimalist med wise & fully understand not wanting to add buckets of supplements to your daily routine. I like to know what is working for my CH rather than wondering what part of several things I might otherwise throw at it are working. I use 1 preventative (not avaiable by Rx but my doc is aware), once a month & don't need abortives anymore.
  22. 1 point
    @Kat_92 did you try the multi vitamin / D3 combo?
  23. 1 point
    Racer1_NC

    What if there WAS a CURE?

    Sounds like one of those "I'll only tell ya if you beg, plead and recognize me." type posts. I've seen many through the years. I know that if one of the many people I know with CH were to somehow stumble on to a real cure for this crap we have, they would be shouting it from the treetops. No one that lives with this shit would withhold information that could bring relief to others that suffer. The desire for personal gain causing a closed mind??? Here???? Seriously????? The fact the you even suggest such a thing shows how off target your sales pitch is. This place is a direct result of Bob's quest to help others. Because of that, many others here have spent far more than they'd care to admit trying to educate people on options, advocate for our collective and lending a helping hand when needed. To suggest a profit motive here of all places is beyond asinine....at best. I'd better stop here before I earn a posting vacation for my non-PC, obscenity laced tirade kicks in to high gear.
  24. 1 point
    Psiloscribe

    Saints & Miracles

    Let' stay on topic shall we? Bob
  25. 1 point
    spinebob

    Gammacore/electrocore

    I have used the Gammacore for the last month and it works great as a preventative treatment for me, I use it for 4 minutes twice a day. I paid $598 for the gammacore device that has 300 two minute sessions and a 30 day shutoff timer that shuts off the device after 30 days of use (or non-use.) Once activated the gammacore expires in 30 days, I used it 90 times in a month so 300 uses is more than enough for anyone in a month. I also underwent Botox for a year prior but the side effects of Botox were too much for me so I prefer the gammacore. I am a retired Electrical Electrical Engineer that served on a nuclear submarine so I know a little about acoustical energy, I took the gammacore apart and the 2 silver round electrodes on top are actually sonic transducers that emit sound waves - NOT electrical waves. Underneath the electrodes are two clear plastic balls filled with a gel in which the sound wave is transmitted into the vagus nerve. 2 electrode screws are inserted into the gel to transmit the sound energy and the frequency is adjustable. This stimulation of the vagus nerve is by sound, quite similar to the Yoga chant "oooohhhhmmmm" that also can vibrate the vagus nerve slightly while the gammacore can REALLY vibrate the vagus nerve! The Gammacore is powered by 2 three volt batteries in parallel so if you know what you are doing you can "bypass" the 30 day shutoff timer and use the single gammacore for months and save thousands. You will need a couple electrical jumpers and a small rheostat to adjust the sound frequency, can get at radioshack for $5 bucks. I will post the detailed instructions and photos as to how to bypass the gammacore timer and have a permanent device, I cannot recommend this for novices due to safety risks and always wear eye protection when working around batteries. And I predict gammacore will start selling a permanent gammacore device soon, $598 a month is ABSURD!
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