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Hi everybody. My name is Sjimmy and I am new here. Let me quickly begin to say THANK YOU for this amazing website and forum. Because of you all I dont feel so alone with this monster in my head. (I hope I have posted this message in the right topic/forum? If not please let me know so I can adjust accordingly ;)) Two years ago, I experienced my first-ever attack. After visiting several doctors, ophthalmologists, dentists, and — finally, thankfully — a neurologist, I was officially diagnosed with cluster headache at the age of 49. Since then, I’ve often visited your website and you guys have helped me out in many different ways. I do have a question, though, and I couldn’t quickly find whether it’s been discussed before. I’m wondering: are there other women who first developed cluster headache around the age of 50? Could there be a link with hormones? I’m currently in the middle of menopause and have been using HRT for about three years. I cant help but wonder if that could have been some sort of trigger to start my CH? My neurologist calls me an "A-typical" CH patient. As (according to him) CH patients normally are male and start showing symptoms for the first time around the age of 20-30..? Sometimes I even wonder, “Is it really CH?” because my attacks seem to appear in a much more “messy” way than I gather is common for most people? I know that everybody is different in the attacks so here is some more info about mine. I tend to get the most attacks (three a day) in the spring. This year they started in March and stopped in June. They have been much more intens than the year before and last around 2 hours each. Then they disappeared until last week (mid august) when I suddenly had one attack, then nothing for several days, and then another one last night. Sometimes there’s no real “cluster,” just a few stray attacks, and then they’re gone again — this only happens in the height of summer. I have noticed that extreme heat can trigger attacks, but they don’t develop into a full cluster?( Is that something anybody also have experienced before?). Autumn is usually restless again, with a cluster period of about two months, but the attacks are noticeably less severe than in spring. In winter, I usually have no symptoms at all. I have O2 on a high flow (12 or 15 for 15-20 min, which works 9 out of 10 times) and I have been cutting down to almost 0 on my sumatriptan injections 6 because I am on a Micro dose fresh mushroom, 5 day 1 MG regime? ( i stopped two weeks after my last custer in June so currently I take nothing) I’m sorry for all the questions and this messy message , but as a relatively new CH patient, I’m trying to get in all the info and also all the tips and tricks to kill the beats.(and my ADHD doesnt help either) .. But most of all i am trying my best to understand why this suddenly appeared — in the faint hope that I might somehow can reverse it. (or have hopes that it will automatically disappears when im through menopauze) Thank you again for just being here and taking the time to read my story. Sjimmy Wil je dat ik ook meteen een kort, helder medisch profiel in het Engels maak van je situatie, zodat je dit overzichtelijk aan een arts of specialist kunt geven? Dat kan handig zijn bij vervolgonderzoek.

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....OXYGEN, an opti-mask nonrebreather mask or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination.... ...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train... best jon

Hi @Subreally good that you have a neuro that understands CH, that's the first step and normal that's one of the hardest, as for verapamil really works well for chronic and episodic,but not for everyone, biggest problem with varap is the dosage needed to be affective for CH, with it being a blood pressure med it can cause serious damage ie heart block, really need to get on O2 life changer for most CH, as for samatriptain injections, just be careful can lead you down a horrible dark rabbit hole that really hard to get out of, have a look at the D3 vit ragime, again works for loads of us and your shadows may well respond to ginger,

New episode started 2 weeks ago. Worst one since my onset in 2022. Attacks are painful and becoming more frequent. Yesterday was 4 in one day, with #2 being the worst of all time. Persistent shadow ever since. My neurologist - who is on ClusterBuster’s recommended list - wants to start me on Verapamil and home Oxygen. My only treatment is sumatriptan nasal spray, but after yesterday I’m ready for injections. Very open to trying O2. I’m wary of Verapamil as my episodes are infrequent and I’m concerned about feeding into some kind of rebound cycle. I’ll discuss this with my neurologist, but wondering if anyone has first-hand experience to share regarding Verapamil usage for infrequent (1-3wk per yr) episodes. I don’t want to poke the bear that hibernates almost all year… thank you for any insight, all.

https://youtu.be/A8bA8sUG2Ig Just a little YouTube link to share with others about a few doctors discussing how they go about treating cluster patients. Not sure it was supposed to be shared but it may help someone or give another option that was not tried yet.

I think most people who have come here from the UK have been prescribed O2 and received it. Maybe something has changed??? Are you doing the D3 regimen? D3 regimen - ClusterBuster Files - ClusterBusters You know about splitting triptan injections? Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters DMT? DMT experiences and advice - Theory & Implementation - ClusterBusters I haven't checked on OUCH-UK for a while, but it has in the past been a very valuable source of advice and support. OUCH(UK) - The Cluster Headache Charity | Support for Sufferers & their Families

A discussion here: Migraine and cluster headaches: Treatments and respect are hard to come by.

Stories like this give hope to those of us who are in the middle of an episode. So glad you found your sweet spot and wish you a life fulfilled and happy and pain free

It's far too early to say much due to the aggressive nature of CH but over the past 3 days I have treated each attack with only red bull and ice packs and for the most part it seems to have a significant effect in reducing intensity and duration. I avoid my triptan shots as I'm mid bust atm and living in a 3rd world country called UK I don't have access to o2. Basically if it wasn't for this group of ppl on CB.org I'm on my own... Will update again in due course. I appreciate though it's very much horses for courses and what may help one person may not help the other. Im currently 5 weeks into my episode and fed up doesn't even come close to describe it. Every single time I lapse into a sleep I get a massive attack. Im functioning on max 2 hours a day of sleep made up on 30 minute cat naps. I never knew the human body can function on such little sleep although I barely describe myself as functioning I'm more just trying to survive

Ive been begging the pathetic nhs for o2 and I can't get any. How did you manage it? I literally have no support except for occasional prescription for 2 nasal vials of that awful triptan. They simply don't care about me and forgotten me completely

I know this is an old post topic but I tried red bull twice this week and both times I felt the attack ease and even dissipate. I don't remember to take it as soon as the attack starts but nevertheless have had positive effects. I will post more updates as I just purchased a big box of these for emergencies and plan to continue using until it shows its not working or is working etc.. We are in it together so let's keep it together x

Sounds like there may be some early signs of change, which is promising. That link between your migraines and clusters is really interesting, and it makes sense to try targeting the migraines first. I came across this article that outlines how Botox is typically used for migraines, including where the injections go, it might be useful to skim http://injectco.com/services/botox-for-migraines-arlington-tx/ Hope things keep moving in the right direction.

I am glad it was not a blood clot! I am sorry I did not respondf or so long, still getting used to the notifications on this forum. Prednisone is such a double-edged sword.....!

...NOBODY who hasn't been "hit" understands...it's just not possible...and not something i ever held against.. ....the best HA specialist i ever had listened to my description: "pain so bad you can't believe its possible to survive, the worst ones...forgetting to breathe, i can't count the times i just wanted to die". she sucked in her breath like at least she partly understood. then said, which made me cry..."i treat this VERY aggressively, which she did!..probably too aggressively. but we figured out OXYGEN, Zomig ns as last resort, and (personally) energy drinks which she forbid because "we just don't know enough about taurine" (i did anyway, just had to).... ...but YES!...we are our own best, and frequently only advocates. what i've learned here and ch dot com have been life savers... best jon

Aww - sorry you’re going through all that! I’ve been dealing with this in the C2-C3 and C3-C4 facet joints. NOTHING has helped! I did steroid injections about six weeks ago and it didn’t do anything. I’m out of CH cycle and it did not cause a flair up or anything.

Thank you Toni for serving the members in Finland- much love to all of you in Finland!

Have you had success with a treatment, then find it stops working? Dr. Chris Gottschalk will be talking about this as it is one of our frequently asked questions. Also - if you have registered but not gotten your hotel room- you need to reserve it asap. If you have a room, but haven't registered- please register so we can plan for your attendance! Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

Hi Everyone I found an amazing source of medical Oxygen in small and extra large tanks in the Austin Texas area for Cluster Headache treatment. Company name is Texas Welding Supply, don’t be deceived by the name they supply fully medically safe O2 and are familiar with the process. Please ask for Amy Viglione, (512) 272-9353. This is website. You can use the doctor letter template found on clusterbuster website. https://www.texasweldingsupply.com

i had the same experience. haven't touched that stuff in 15 years.

That is really ridiculous. I thought south Africa was bad. Sorry buddy. I hope they change their ruling. The issue is that there is no one that has heard of chs. Every person I have ever mentioned it to, has never heard of it.

Completed. A couple of questions could have used an answer other than yes/no, but this survey should be VERY helpful.

Thank you!

Cool. Just completed it!