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  1. 4 points
    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
  2. 3 points
    LennyC

    Aimovig, new CGRP inhibitor

    So I've been headache free since I started this drug five months ago. If you can try it, I say go for it. Best of luck. Lenny
  3. 2 points
    Ricardo

    CBD

    Not that long ago Forbes posted an article about cannabis for migraine prevention. It got ignored by all the headache advocacy groups (for SOME reason that I will let you all figure out on your own) but I am posting it here because it did include some cluster sufferers. It was a small study but it found that half of the cluster sufferers had better luck using a THC/CBD combo than using verapamil. It was a whopper dose, from what I can tell it looks like 100 mg THC and 100 mg CBD combined. One interesting thing that was noted was that the cluster sufferers who got relief were the ones who had migraine as a child. The study was done by Dr. Maria Nicolodi, an Italian researcher that I have been following for a while. I have a lot of respect for her and have seen a number of valuable studies done by her. Here's the link- https://www.forbes.com/sites/daviddisalvo/2017/06/29/marijuana-treats-migraine-pain-better-than-prescription-medication-study-finds/#73190af53700 And here is some more info on the study- https://www.ean.org/amsterdam2017/fileadmin/user_upload/E-EAN_2017_-_Cannabinoids_in_migraine_-_FINAL.pdf In regards to anecdotal experiences, I know one person that has had multiple brain surgeries that were not very successful but he has now gotten relief by vaping CBD as a preventative. On the other side of the fence is me, if I take CBD it is one of the worst cluster triggers I have. High dose THC works pretty well for me at times but I stay the hell away from CBD at this point. I am pretty sure that in this regard I am just (once again) the oddball. I have not met anyone else that has ever said that CBD triggers their clusters. Hope this helps. -Ricardo
  4. 2 points
    Moxie Girls first rule of Cluster Headaches: No two people's clusters are the same, and just as soon as you figure yours out, it changes. MG
  5. 2 points
    I see dr Brian Grosberg in West Hartford CT. He used to be in NYC. He is extremely empathetic and sensitive to your needs. He knows about cluster busters and can get you enrolled in a mushroom study if you’re interested. I think he may be taking on new Pts but you have to check ‭(860) 696-2925‬.
  6. 2 points
    You might want to send a PM to BostonHeadacheDoc. He's a headache specialist that frequents the board and regularly speaks at CH conferences. He's helped many of us with CH. J
  7. 2 points
    https://www.ncbi.nlm.nih.gov/pubmed/29969187
  8. 1 point
    CHfather

    Interesting sleep/CH research

    According to this research, "there is no relation between CH attacks and specific sleep stages or between CH and breathing parameters" Also, overall sleep patterns in CH patients are the same out of cycle as in cycle. https://www.docguide.com/disturbed-sleep-cluster-headache-not-result-transient-processes-associated-cluster-period?tsid=5 BACKGROUND Cluster headache (CH) is characterized by severe, unilateral attacks of pain and a high nocturnal attack burden. It remains unknown if perturbations of sleep are solely present during the CH bout. Therefore, we aimed to investigate differences in sleep between the bout and remission period in episodic CH (eCH) patients, secondly to compare patients in the two phases with controls. METHODS eCH patients, aged 18-65 years, diagnosed according to the International Classification of Headache Disorders 2 nd edition, were admitted for polysomnography at the Danish Center for Sleep Medicine, in bout and in remission. The macrostructure of sleep including arousals, breathing parameters, limb movements (LMs) and periodic limb movements (PLMs) were compared with 25 age-, sex- and BMI-matched healthy controls. RESULTS There were no differences in any of the sleep parameters for patients in bout (n=32) compared with patients in remission (n=23). Attacks were unrelated to sleep stages, presence of apnea episodes, PLM's, LM's and arousals. In bout, patients had longer sleep latency (18.8 vs. 11.7 minutes, p<0.05) and REM-sleep latency (1.7 vs. 1.2 hours, p<0.05) than controls and sleep efficiency was lower (82.5 vs. 86.5%, p<0.05). Patients in remission only had a longer sleep latency compared with controls (17.5 vs. 11.7, p<0.01). CONCLUSIONS The results support the presence of a continuing or slowly recovering disturbance of sleep outside the bout rather than a disturbance occurring secondary to attacks. Further, we confirm there is no relation between CH attacks and specific sleep stages or between CH and breathing parameters. This article is protected by copyright. All rights reserved.
  9. 1 point
    fireface

    Traveling with CH

    For those of you that are anxious or even cancel vacations because of CH.. as I was for years... Here is some reassuring info that I've found out. If you have an O2 prescription.. an oxygen supply company in the area you'll be in will deliver a tank right to your resort. I've done it several times in several states and it is really hassle free. Cost has been very reasonable, also. One supply company didn't have big M or H tanks so they sent out an O2 concentrator that put out 10 LPM. Take your O2ptimask. I can get by with 10 LPM. I'm headed out tomorow for a months vacation and have tanks lined up at all the different resorts. Hope this helps someone.
  10. 1 point
    fireface

    Beast left for 4 days....but returned

    I did the prednisone burst at the start of a bad cycle and it killed it within 24 hours. It was a miracle. BUT... It returned 3 weeks later with a vengeance. Stay on it.
  11. 1 point
    MG's first rule of clusters: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes. Really glad you found a system that works for you. A lot of people report that physical exercise helps with clusters, and a good diet low in processed foods and sugars is always a good idea. I'm sure you'll find people who find this method works, and just as many that don't. As an example, for most cluster headaches, alcohol is a massive trigger. But not for me. In fact, I can use it to abort a migraine if I have to. We are all different. MG
  12. 1 point
    FYI his office is dimly light through out and is very soothing. I thought they were closed the first time I went in. There are many hotels close to his office. I sleep over the night before as I live 3 hrs away in NJ.
  13. 1 point
    Thanks for sharing. Speaking only for my female self my triathlon training was extremely strenuous. I strictly adhered to specific dietary requirements during training. My cluster headaches did not change. Please share the sources etc for the research.
  14. 1 point
    learn why, how, and when this is happening to you. This is a progressive disease, the signal is always flowing as the brain grows, eventually becoming a loop causing distubances in the brain. http://www.theclusterbusted.com It explains every aspect of Clusters thru simple rules of electricity, chemistry and physics. Very eye opening and will give you a basis for moving forward in light instead of wondering "why me?" good luck
  15. 1 point
    jon019

    CBD

  16. 1 point
    CHfather

    Help Needed

    Yes, that is basically true. Some other "headache" conditions sometimes respond to O2, but not consistently and generally not as fully as CH does. A big note of thanks can be given to Dr. Kudrow (grandfather of the actress Lisa Kudrow, and who himself had CH), who conducted the first recognized trials of oxygen in the early 1980s, and to Dr. Goadsby and his colleagues who conducted medically persuasive (double-blind, placebo-controlled, etc.) trials in 2009.
  17. 1 point
    mikesal

    I Ate Myself to Headaches (Tyramine)

    You don't need to agree or believe in what I share for it to be of value. I discovered over time, including trial and error how important a healthy diet and vitamin supplementation can help control headaches. Simply put we need to be eating the right foods and taking supplements to help maintain a healthy lifestyle as we age. Batch is on point with the (D3) which has been quite helpful in my life as I struggled with my headaches. We all have our own triggers we avoid. Alcohol, smoking, chocolate, MSG, nitrates, and the list goes on. Our diet and life style can trigger a headache. High BP, diabetes, sinus issues, the weather, exercise can all trigger headaches. No doubt there are other variables relative to each individual but my point is we all received the gift that keeps giving wether we want it or not. There's a reason we became CH sufferers. No one in the medical field can tell you definitively what causes these headaches or why we get them. What I found was that certain foods I was eating were triggering my headaches. There is a strong link between our belly and brain. Anything we ingest that crosses the blood-brain barrier can cause a positive or negative response. I can't eat pineapple, nuts, peanut butter or certain cheeses without getting a headache. But I can eat a wide variety of foods that don't cause pain. I learned this from being completely off preventatives, and testing. Everything I've learned hasn't been the magic bullet, but the quality of my life has improved as I experience less pain when a headache occurs. I still have headaches, but their not like they were before regarding frequency and duration of pain. What I learned is Tyramine is a naturally occurring amino acid which forms from the break down of food as it ages. Tyramine is not added to food, it builds up over time. Left overs in the fridge that we eat days later can contain high levels of Tyramine. Tyramine plays a role of helping to keep our BP on track, but it can also affect our bodies in negative ways. Tyramine can trigger a cluster headache. I've personally experience this based on foods I've eaten. Keep in mind what I eat affects me differently than how it may affect you. I'm not going to list safe or unsafe foods you should or shouldn't eat. I just want to make you aware of its potential in triggering headaches. When I eat something with Tyramine the headache is pretty bad. It all happens with the shadow, stabbing eye pain, stuffy nostril, and watery eye. I abort this event with some coffee and tons of water to flush out. Then several hours later another episode occurs which is not as painful. Then another which is a headache I can stand still and deal with. My point is over time the pain reduces as my body processes what I ate. That food item I had an issue with ends up on my shit list. It's a trial and error process that I refined based on foods I eat. The most important part I learned is to eat well and don't skip meals. Low blood sugar levels can trigger a headache. I know from my personal situation I didn't eat well because of my issue in dealing with headaches and pain on a regular basis. See if this rings a bell... You eat something, watch TV, and then head to bed. While you fall asleep you're woken up with some pressure and the headache kicks in. You scramble to your personal abortive routine and abort the pain. You fall back asleep only to repeat the process several more times. This scenario is what caused me to think about what I was eating before I went to bed. With me it was cookies, M&M's, sourdough pretzels, pizza, soda, man the list goes on. I was eating myself to headaches. I sleep like a baby now, and I don't wake up with headaches like I use to. Good sleep is an important element when it comes to proper headache management. While on preventatives I was taking an anti depressant (MAOI) which made the headache more painful for me. Outside of the CH features I would perspire from my neck. This was a dangerous situation I had no clue about that could have caused me a heart attack. My BP shot up and I felt light headed and unstable. What I learned and found out may or may not be your issue but I need to pay it forward in hopes of my experiences resonating to something you might benefit from. Here's to a PF life. PS. Two good books... The Gut and the Brain Change your Diet, Change your Life

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