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Hey there!! Welcome too! Do you want a pretty much sure fire test? It will give you a Cluster - Nitroglycerin. Mr 'I'm the Doctor' needs to check his lack of knowledge. He can give you a tab of Nitro and be standing by with the O2 when you lose your $hit from the pain!! JERK. Wonder if he even knows that???? I too am female. I went to my current Neuro and he tried the same mess. "Must be migraines since women don't get Clusters.' Really? I took my husband the next visit in a week and he glared at the man and said " I want my wife back. She is in hell from 8pm every night till 6am every morning and I want my wife back!' That got his attention. And we get along very well now. I have had them since I was about 22. Almost 50 years, so yes, you can live with this mess. So, either get his attention or get a new doctor. You need O2. If you said it worked for you and then he denied you, what kind of 'healer' is that person? Not a very good one. We can get you set up with welding O2. Well, tell you how to do it. But, if your insurance will pay, they should have to pay, not you due to an idiot at the helm. When do you return to him? Hugs and hang in there!!

@Newbie hey welcome to the forum. I am a 28 year old female with chronic cluster headaches. Never smoked a day in my life. Doctors don’t really know everything huh? My headaches are pretty mild considering how bad these can get. Mild headaches year round with random ramp ups that can get pretty severe. You have come to the right place! Don’t be scared. Take your emotions and channel them into fighting it. Don’t get defeated. Kat

Hi Mike, Has been a couple of months since your original post, I hope things have settled down a bit for you in that time. But, knowing the beast, it may not have. The best way I've found to convey the level of pain to a non-clusterhead is this: Most people I talk to have had at least 1 muscle cramp in their life, and it's usually a calf muscle. I start by asking them to think back to the worst muscle cramp they can remember, and get them to think about how suddenly the pain came on from out of nowhere, and how it was all consuming. They couldn't move, or speak or think about anything apart from the pain. For the thirty seconds or minute that it lasts, it becomes their entire world. I then ask them to imagine the pain being doubled. And then doubled again, so it is 4 times as painful as it was. Then, shrink the pain down to the size of a golf ball and shove it in your eye. Right in the inner corner where you get a brain-freeze attack from eating ice cream too fast (another good analogy). Now, instead of lasting 30 seconds, imagine that pain lasting 3 hours. At this point, you can usually see the realisation on their face. And you cap it off by saying that's a tenth of what a cluster attack feels like. I also never call them cluster headaches, I always call them cluster attacks. Because that's how it feels, like I'm being attacked. I have headaches, I have migraines, this ain't them. I've also often said that if a headache were the Moon, and a migraine the Earth, then a cluster attack would be the Sun. When I was house-sharing with my best friend, she would get frustrated too that she couldn't help. We came up with a system that worked well for us. During the actual attack, she'd just leave me alone. I'd normally go to my room and just be on my own to deal with the pain. There's nothing anyone can do, and just having someone around made me feel self conscious. But, as soon as the pain subsided, she'd be there with a blanket to wrap around me and a tall glass of cold water. My body temp normally fluctuates wildly after an attack, and having a blanket or bathrobe to wrap myself in was helpful, but sometimes I wasn't in a state of mind to get it myself. Also, I'd be extremely thirsty and dehydrated. As soon as I downed the first glass of water, she'd go and get me a second, and a third if I needed it. Lastly, she'd offer a hug and a shoulder to cry on. She'd sometimes bring a bit of chocolate too, which helps after an attack (I find). That worked really well for us. She found that she didn't feel guilty for leaving me to suffer on my own, there was nothing she could do anyway then. But as soon as the pain was gone, she was there for me when I needed someone most. Hope that helps. Mox

Hi All- Wishing health and wellness to all of my clusterhead friends. I've assumed control of a pharma company with decent resources and a good management team. Please message, email, or call me if you know of any promising phase-I drugs that can be used to help clusterheads. I'm still attached to this community and still holding out hope to develop a good addition to the standard of care. NOTE: If ANYONE can track down BOL-148 and the patents, please let me know, ASAP! -J

You've already had the best answers but I wanted to give my 2 cents as it differs a bit. My CH started as I hit 30, and soon after had two children. Having the added load of a young family to support when you're struggling to keep your job because of CH can push it over the edge. I was close to suicide for a long time, when a chance but failed therapy helped me out the darkness. Back in the mid 2000s I had a sympathetic doctor but no official diagnosis. As a shot in the dark we agreed for me to try amitriptyline as it was used off-label for neuropathic pain. Although it didn't help much, and my doses were way below the usual for its supposed anti-depressant uses, I found that over a few months it gave me back the mental strength that CH drains from us so readily. I stopped it when I was officially diagnosed, and moved onto Imitrex. Big mistake in my book, I am firmly of the belief that I received worse slap-backs because of that drug. Those 3 years were the worst of my life. I've been back on amitriptyline for 5 years and not touched sumitriptan since. However, this does bring complications. You must thoroughly research any drug you are taking and how it might interact with the options available to treat CH. Of course, also discuss it with a medical professional. In my case, I taper off the amitriptyline for 2 weeks before busting (mushrooms / RC seeds) and that works for me. There could still be a risk involved with that, but frankly I am wiling to roll the dice on that one for the benefits I have felt (and by extension, my family). Good luck with everything.

On this day in 1938 Albert Hoffman synthesized LSD for the first time. His mission was to discover new drugs to treat headaches and cardiovascular disease. His impression was that the molecule was not very interesting so he shelved it. 5 years later he thought it was worth a second look. The worlds eyes have been opening ever since. https://en.wikipedia.org/wiki/Albert_Hofmann

https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Such crazy crap they put people through! "It looks like CH, but because you're such and such, I won't diagnose it as CH." The idea that to have CH you have to be a man, older, and a smoker, is nutso thinking from many years ago! The reason women have been told they don't have CH is because women aren't diagnosed with CH because "women don't get CH." Here's another file you might look at for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Although the heading says "non-busting information," there is actually a summary at the end about busting that you should look at. Regarding your Imitrex, be sure to look at this. You don't need the full 6mg (if that's what your injector contains) to stop an attack. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

If I remember correctly, Michael Pollan's book, How to Change Your Mind, gives a really good description of Hoffman's bicycle ride home that fateful day, and the history behind the discovery. A really good read, can't recommend it enough. Mox

Thanks for getting back to us, Jack. So many don't. Much appreciated. Is this helpful at all? "Justin Kirkland ... was recently awarded a U.S. patent for the improved synthesis of the ergoline BOL-148: useful in treating cluster headaches." https://www.a4m.com/justin-kirkland.html#:~:text=Kirkland has earned a BS,useful in treating cluster headaches. https://patents.google.com/patent/US20160237080A1/en I have tried to locate this Kirkland fellow, and have called a couple of places where he is said to have worked. Good as I am at googling, I can't find him. As we have discussed, Drs. Halpern and Passie hold a patent related to using BOL to treat CH ("methods and kits"). https://patents.google.com/patent/US8415371B2/en

I know Imperial College, London are conducting studies. Dr Robin Carhart-Harris, is the Head of the Centre for Psychedelic Research https://www.imperial.ac.uk/psychedelic-research-centre/research/ Psilocybin is not even allowed for research in the UK so I think for one study they sent people to Amsterdam, where it's available recreationally. https://qz.com/1918001/psychedelic-therapy-for-depression-is-on-sale-for-the-first-time/ If a slow release Psilocybin pill (or regular dose) was available a bunch of us Clusterheads/Migrainers could travel there, pop the pill and be home in time for dinner at little cost!...I plan on doing that anyway but really there needs to be a Worldwide online resource that diagnosed CH patients can record their treatments into, that other patients & doctors could access (AI will surely be of help if we had all the patient data) -The Russian version of Sumatriptan's contain derivatives of DMT in them so that might be worth a look? The UK Sumatriptan for (CH's) market is an endless money pit which doesn't help everyone & long term is no good. Alternatives are much needed. Thanks for looking out for us, glad someone is trying to put it all together. Good day J!

I think there is still an annual 'bicycle ride' to honor the discovery. Pretty amazing story there.

Hang in there brother.

Hi Vipul and my cluster friends- I haven't been posting on the forums but have been incredibly active. I am typing this response while muted on a conference call (our secret), and have been working around the clock, nights and weekends included. I have joined a new company with great resources and brilliant hard working scientists, and we are pushing hard to develop a COVID-19 therapy that is both safe and effective. We have 7 portfolio companies across therapeutic indications but have all temporarily shifted focus to push forward in the midst of this global health crisis. The problem is, this new company I've joined has an investment mandate for longevity, meaning, we are really only targeting interventions that address the underlying mechanisms of age or age related disease. Although I am heading business development and am now exposed to many different assets and partnership opportunities, for the time being, cluster is outside of this mandate (unless a cluster treatment works through one of the aging pathways we are focusing on). My thesis, shared with many on this forum, is that serotonergic psychedelic drugs hold the key to the next iteration of cluster treatments. I wish I could do a PhD in pharmacology and pursue some of these leads on my own. If anyone knows any good professors who'd take a gamble on an atypical scientist, let me know... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4812802/ Anyway- I am now in much stronger professional contact with both ATAI and Compass, and, as some of you know, I've spoken with Compass in the past about Cluster. I'll continue to keep my eyes open and give the world my best each day. Stay Strong! -Jack P.S. Please feel free to email my personal work email with thoughts, questions, concerns, or relevant cluster leads. I know this is technically me posting my email on the internet, but I'd appreciate if you kept this email private for Clusterheads or those helping advance treatments for CH: Jack@cambrianbio.com I'll also include my linkedin. If any of you want to connect, just mention you're from ClusterBusters and I'll accept. I'm serious that I remain committed in my heart to this community and will do anything I can to help (even if I'm not the best about posting frequently on the forum). https://www.linkedin.com/in/jack-fernandes-6a05738a/