Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation since 09/29/2020 in all areas

  1. 6 points
    To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
  2. 4 points
  3. 3 points
    Hey ya'll! I'm posting this with BobW's approval......a clusterhead in the Facebook support group has had some designs drawn up and will be printing these shirts herself.....all proceeds over her cost (approximately $11/shirt..slightly less on larger sizes which cost her more) will be donated directly to clusterbusters......orders will only be taken thru Oct 9th and then she'll begin printing and shipping......I ordered 1 size medium and my total cost with shipping was just under $25. DD  https://darvilclothing.com/
  4. 3 points
    ...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums... ...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby.... ...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry with joy....and probably curse whoever stood in the way of getting it in the first place. 1982 was my first...I can still get teary remembering.. ...many of us find that an energy drink alone or in combo with the O2 is incredibly effective in aborting or lessening a hit... .....I am concerned with your listed drug cocktail...with the exception of Zomig, which is my abort of last resort and highly treasured...in the unlikely case that one of these "prevents" works you won't know WHICH one, and you'll ride the merry go round forever (especially if your cycle ends on its own anyway). ...pregabalin (Lyrica) has a very low success rate and some crummy side effects...propranolol is an old drug (first drug tried on me nearly 40 yrs ago) that sometimes works for migraineurs and rarely, if ever, for clusterheads......verapamil can be effective (was for me for a while) but SR is extended release with much fewer reports of effectiveness, you want the immediate release, and the sweet spot for most is 480 mg/dy in divided doses, some (my case) go up over 1000 mg to find relief in high cycle...(heart rhythm should be monitored)... ...put the D3 regimen and/or mm in your bag of tricks and the above may be moot.... best jonathan
  5. 3 points
    My wife shattered her back and I mean blew apart t5, fractured all the spinous processes down her back, so she does know chronic pain. Which is helpful. We have come to a bit of an equilibrium, i'll ask for say essential oils on my temple area or she will ask if I want them, it does next to nothing except maybe the scent is slightly calming, but she feels like she helped and I let her. We both know the truth but it gives her some control or input into "helping" she also did a crapload of research and funny thinking now, Lamaze breathing can help during an attack, something she found. She will also get my o2 ready, grab me a pill or ask, I just have to nod or shake my head, gives her a sense of helping, feeling not so helpless. That is one thing she has conveyed to me, how horrible it is to feel helpless to do anything, some of her fear and frustration stems from that. You have to accept she will never truly understand, she will have to simply believe you. Edit I have found meditation, guided, helps in between to stave off those "omg what is the next going to be" Headspace, on any device is a great app.
  6. 3 points
    It is very difficult for the CHer and the spouse/partner to grasp what we go through. Do not expect it! And actually be grateful they don't have this mess. My spouse wanted to be there to know about everyone that I had and try to 'help'. It about caused a parting of ways. For me, there is NOTHING he can do to help, just leave me alone till it is over please. That was the hardest part for him. 'How about I talk to you and you just listen?' Listening jacks up my pain. He was devastated to find out that the best thing he could do was leave me alone. And I finally got my tanks moved to another room so I could treat them in peace. If he hears me get up, he acknowledges it and leaves me alone. If I say I need a day off to treat this, he supports me in that effort. That is the best thing a spouse can do in my book - help you treat this disease. Showing him a man suffering with this solved my problem. He 'assumed' it was because I was a female and not able to take the pain 'like a man'. The videos proved my point and he stopped thinking I was a wimp and offered up all of his support because he now saw my strength. You need to understand that she can't really understand what you are suffering. You need to do everything that you can to get them under control - for yourself and your family. Where is your O2? Are you using it in the best way possible? What are you taking for your CH currently? There are many ways to reduce the pain or actually kill the cycle.Please, allow us to help you find your way back to life. What are you ding for your CH now? ATB!
  7. 3 points
    mike', I know this wasn't your question, but what are you doing to treat your CH? Maybe if your attacks were more under control it would help your frame of mind at least a little.
  8. 3 points
    The t shirt lady posted this update today.... "Wanted to give everyone a quick update - so far we have sold 36 shirts! That is $396 to cluster headache research!!! Our store will remain open until 10/9/2020 if you would like to purchase and help out this great cause. Remember a minimum of $11 per shirt sold gets donated to cluster headache research through clusterbusters" DD
  9. 3 points
    This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Foundation, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
  10. 2 points
  11. 2 points
    Thank you all who replied for your concern, comments and suggestions. I cannot say how much this means to me, because I know I am not facing this alone. The commuinty on clusterbusters keeps me sane. You guys are out there. Only you understand. Thank you without end.
  12. 2 points
    Update: I got a normal flu shot and it didn't interfere with my CH!
  13. 2 points
    Such great news. Many thanks for all your hard work. I know the Vit D3 regime made a difference for me.
  14. 2 points
    Such valuable information! Thank you for all you do Batch. I’m so lucky I found this group kat
  15. 2 points
    I also thought for a long time it was dependent and I tracked it for a while. Conclusion was for myself there is no real correlation to see between weather and headache frequency. But still... every time weather gets bad... I feel I get hit harder than usual. siegfried
  16. 2 points
    That is great Batch!! This study should provide the proof needed for the Neuros we deal with. Wish that I could participate, but the protocol is keeping me cycle free and I can't give that up.
  17. 1 point
    Been seeing Wim Holf's interviews and his achievements on you tube. His method seems to be quite simple and he's proved crazy stuff scientifically. Managing to control release of endorphins, dopamine etc in the brain. Wondering if his method could help with CH?
  18. 1 point
    @maskedmarvel the “what if’s” are always the worst. I have come to the realization, if I am in pain and something has helped I’m the past, I will use what I know works best. Many people do a bust once a month or 60 days to prevent future cycles. I haven’t read anyone saying that they triggered a new cycle. I am chronic so I can get about 3 weeks to one month pain free with MM.
  19. 1 point
    My error it looked like the question was about the article/website info not about your Vagus stretch. I'd say the answer remains the same. Vagal stimulation has been tried and used in migraine and clusters but overall I would say the results are disappointing. A few folks think it helps, even fewer are convinced. Ultimately all nerves can be connected and to be sure the Vagus is a critical pathway but I suspect if manipulation and treatment of that area was truly helpful we would have more positive data by now.
  20. 1 point
    Ok thanks.. I was thinking like, what if my cycle is over and I eat some.. No evidence for that just being paranoid i guess
  21. 1 point
    Kat, my experience is this: At 23 I began having one sided headaches daily. I had an EEG done, I had been knocked out prior - exactly three months. The EEG showed defective Beta waves. The doctors all scratched their heads and said 'try this' and then 'anything you need, just let us know'. At the time it was well known/assumed that repercussions from being knocked out occurred at three months. I had Elavil and one other pill to take. Thorazine prescribed as needed for nighttime hits. My headaches were always left sided and lasted about 20 minutes with a moderate level of pain that was boring into my head.They were daily. I stayed on this regimen for about two years. Then I dropped it as I was having no issues. Two years later they returned. Low level chronic. Not bad pain, but mess with your attitude pain. After five years, those went away when I decided to put my feet in screaming hot water for the duration rather than take their stuff. I then had a 10 year hiatus. When they returned, I learned what pain really was. They returned one afternoon when I had just cracked a beer to look a the lovely mountains around me. I took a sip and then another. Then my head began to go crazy. I looked at the beer and though 'surely not' and took another drink. That was the last. The pain was shocking. The solution beyond me. I was terrified. It took about 24 hours for me to begin searching 'headaches'. It took about two days to see my normal doctor and get a script for Carbmazapine. Lived/survived on that for a while. Then I upped to dose as allowed, and had triple vision. Next up, the nueuro. Who happily proclaimed that I had migraines. Nope. Oh yes. Take this and come back in two weeks. I took my husband, who changed the mans point of view right quick saying 'My wife is in agony every night at eight pm. I want my wife back!'. And that turned the light on for him. Then, I received proper treatment, so far as he knew. My hits were 2.25 hours long and occurred every 2.50 hours. So, fifteen minutes between the four night time hits of every cycle for 6 to 8 months of the year. It was hell. I became a person I did not like. I found Cjusterbusters. I survived. So yes. mine have changed over the years. But I have won the war.
  22. 1 point
    Weather seems like it is a factor and in the throws of a cycle we reach for any explanation for our pain. With barometric pressure reports on our phones, watching the weather patterns etc. We all desperately look for an explanation so we can find hope in certain patterns. I used to think it was barometric pressure drop, then I thought it was barometric pressure instability, for a while I was convinced moon phase mattered. I have tracked for myself and in my case weather changes are coincidental to whatever circadian trigger hits our hypothalamus. I believe there are migraine tracking apps looking at weather too. Most studies debunk pressure changes but some suggest validity. There are lists of places with the least to most barometric pressure changes and I do not think it correlates with incidence of disease.
  23. 1 point
    Yup, just before storms come through, I'll get CH activity. I picked up on the pattern earlier this year and it's been consistent since.
  24. 1 point
    .....mine a bell curve....slow ramp up of number and intensity...a plateau of soul crushing bangers....slow ramp down. i knew the cycle was over when i got one last screamer which was always worst of cycle (actually prayed for that one as i knew what it meant). when i collected my wits and nerve (sometimes several days, sometimes several weeks), did the beer test.....Heineken....surefire tell..................
  25. 1 point
    Hi. I'm new on this forum, but wanted to share some thoughts on the ketogenic diet. My 20 year old son has had episodic cluster headaches for the past three years. I would do anything to provide him and anyone suffering from cluster headaches some relief, which is the reason why I am writing. I recently read a journal article from a group of researchers out of Italy who placed 18 chronic cluster headache patients on a 3 month ketogenic diet. Of the 18 patients, 11 experienced full resolution of their headaches and 4 had a headache reduction of at least 50%. Here is a link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/ I realize that this is a small sample size and the results are positive but preliminary. But I wanted to share this information, so that others may be able to benefit. We have a family friend who has chronic cluster headaches. I worked with her to put her on a keto diet in June and she has improved dramatically, although she is also on Verapamil and a vitamin regime. She temporarily went off the diet at a wedding and immediately noticed a shadowing effect of an impending cluster headache. Please note: The keto diet may not be for everyone. There are some contraindications (e.g. diabetes) to the keto diet, and you can Google them. If needed, please check with your health care provider before trying it. Since most doctors know very little about nutrition, they may try to talk you out of it. For those of you who are interested in trying this food plan and are unfamiliar with it, the diet is roughly 75% fat, 15% protein and 10% carbs. The study used 10 grams of carbs per day for the first month and 20-30 grams of carbs for the second and third months. This is a pretty drastic change from the way that most people currently eat, so perhaps 50 grams of carbs per day is a good starting point if you don't want to go lower than that. Ketones are a source of caloric energy used by the brain, heart and muscles similar to glucose (sugar). They are produced in the liver as a by product of fat metabolism when insulin and blood sugar are low. Insulin spikes after we consume high carb/sugar foods and drinks, which is bad for the body. No need to count calories. Eat until you are content, or better yet, stop eating when you are 80% full. The good news is that you will stay full longer on a fat based diet than a carb based diet, so chances are that your appetite will not require you to eat every few hours. A carb diet is like building a fire with leaves and pine cones. There is an initial burst of flames (energy) but the fire dies out very quickly. In order to keep the fire going, you need to constantly add more leaves and pine cones (in other words, keep eating more carbs). A fat based diet is like building a fire with wooden logs. The fire burns for a long time without having to add to it. The human body can store about 2,000 kilocalories of carbohydrates and about 40,000 kilocalories of fat. The goal of keto is to burn the fat stores that we all have, as a form of energy. But we can't get to the fat stores if we are eating muffins, donuts, bagels, etc. and drinking sugared drinks, and the body is working hard just to manage the extra sugar in our systems. As you are transitioning to a ketogenic diet, some people go through the "keto flu". You may not feel so great at the beginning, but after a few weeks, will really notice the difference. Even if it doesn't help with cluster headaches, there's a very good chance that you will have more energy, more mental clarity, lose some weight and see other favorable outcomes. Here are some references for you: Keto food list: https://www.marksdailyapple.com/keto/shopping-list/ Keto recipes: dietdoctor.com Thought leaders in the keto world: Jeff Volek, Steve Phinney, Jason Fung, Tim Noakes, Mark Sisson (marksdailyapple.com). Feel free to google them and/or watch their videos on You Tube. Good luck and I hope this helps you!
×