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Got to meet so many folks, several from the board that I've interacted with for years! The big take away for me? At the 2010 conference in Portland we had one neurologist in attendance....our own bostonheadachedoc....this year we had several including one of our longtime members son who became a neurologist as a result of his Dad's clusters!!

It was again an awesome time and great to se it growing over the few short years I have attended. Many more Doctors Authors and Vendors. Most of all a bunch of fun happy clusterheads from literally all over the world. Hope you all can make it next year.. Bring a friend and leave with 100 new ones.

Hi all. I wanted to build on a post couple of months back that mentioned this early 2025 study in Annals of Neurology which found that Oncostatin M (OSM) was significantly elevated across all forms of cluster headache (CH), episodic in cycle (ECH), episodic in remission and chronic (CCH) when compared with controls. Distinct Alterations of Inflammatory Biomarkers in Cluster Headache Lund, N. L. T. et al. Annals of Neurology. 2025 https://pubmed.ncbi.nlm.nih.gov/39981939/ Interpretation: Findings show that the immune system is altered in all 3 states of cluster headache compared with controls. Oncostatin m was elevated, constituting a promising target for future studies. The distinct alterations between episodic and chronic cluster headache are striking and urges further research of the immune system in cluster headache to better understand its potential role in prediction of disease activity and treatment response. OSM belongs to the interleukin-6 family of cytokines which are signalling molecules released by cells to facilitate communication within the immune system and the body, acting as messengers and binding to receptors on other cells to trigger responses like inflammation, cell growth and immune cell activation. OSM is produced mostly by activated monocytes and macrophages along with T-cells once the immune system is already engaged. Triggers include microbial products such as lipopolysaccharide acting on toll-like receptors, upstream cytokines like IL-1β, TNF-α, and IL-6 as well as T-cell activation itself. In other words OSM typically appears as a second-wave signal once innate and adaptive cues are already active. After its release OSM signals through receptor complexes that require gp130 subunit, a shared hub for the IL-6 family. OSM pairs gp130 with either OSMR or LIFR receptors which activate Janus kinase enzymes (JAKs). JAKs phosphorylate STAT3 (signal transducer and activator of transcription 3) and activated STAT3 then enters the nucleus to upregulate genes for chemokines, adhesion molecules and matrix metalloproteinases. Short-term controlled activation of this pathway is essential for tissue repair but sustained persistent activation may lead to detrimental effects including weakened barriers, leukocyte recruitment and ongoing systemic inflammation. In Crohn’s disease and ulcerative colitis OSM has been shown to drive stromal activation and barrier dysfunction and high levels of OSM are a predictor of poor response to anti-TNF-α therapies. The CH study by Lund and colleagues suggests a similar kind of hard-to-quiet inflammatory program in the cranial milieu of CH patients regardless of whether or not they are in active cycle. So what may drive the persistent upstream activation that induces OSM in the first place? This wasn't discussed in the article but one source that may deserve attention is the emerging gut-immune-brain axis. As explored in my earlier post, a growing body of literature in migraine describes altered gut and oral microbiota, reduced microbial diversity, links to markers of intestinal hyperpermeability and bacterial endotoxin exposure as causative agents in migraine pathology. While migraine and CH are distinct disorders both share neuroinflammatory components, cytokine involvement and respond to many of the same treatments, is it reasonable to ask whether dysbiosis may help maintain the triggers that induce OSM expression? And if so what implication does that have on future treatment strategies for CH? And where might the Vitamin D regimen fit into this picture? The active form of Vitamin D, calcitriol, binds to the vitamin D receptor in immune and barrier cells and influences the expression of hundreds of genes. It suppresses NF-κB and MAPK signalling, promotes regulatory T-cells and IL-10 and strengthens barrier integrity by upregulating tight junction proteins in epithelial and endothelial cells. Building on Pete Batcheller’s hypothesis, maintaining sufficient blood levels of Vitamin D3 may help downregulate some of the upstream drivers of OSM expression while counteracting OSM’s disruptive effects on barrier function. Supporting this idea, work outside the headache field has shown that calcitriol can shift macrophages from an M1 pro-inflammatory state toward an M2 reparative state, reducing the production of OSM, TNF-α, and IL-6. A balanced view is important. The 2025 study identifies OSM as a persistent signal and points to specific differences between chronic and episodic CH. It did not identify a cause and it did not test interventions. The migraine-microbiome literature suggests dysbiosis as one possible upstream driver but translation to CH is yet to be explored. Other papers from this author on CH for your interest. https://pubmed.ncbi.nlm.nih.gov/?term=Lund+NLT&cauthor_id=37667192 Includes an article titled "Current treatment options for cluster headache: limitations and the unmet need for better and specific treatments-a consensus article" which concludes "We find that there is a great and unmet need to pursue novel and targeted preventive modalities to suppress the horrific pain attacks for people with cluster headache."

I'm attaching a pic to illustrate parts of the regulator. When you turn the M tank on, the demand valve will be charged and ready to use. The mask flow control has no effect on the demand valve. You will leave it on "0" unless you use the O2 mask rather than the demand valve. You will need an adjustable wrench of sufficient size to attach the regulator to the tank and the demand valve to the regulator. Ensure the tank valve is closed before swapping regulators.

Features that make the severe LEFT sided head/face pain attacks more likely cluster include- rapid onset of attacks- CH attacks reach peak pain in a few short minutes, hence very quick ramp up, unlike migraine, and CH attacks last 30 min to a few short hours (typically an hour or two at most). There is a tendency to favor night attacks- so awoken from sleep with them- and there is no going back to sleep until the attack is over. These night attacks are earlier in the night- whereas migraine waking you up would be more likely morning. Any sensations in the area of CH attacks (head/face) in between attacks are shadows and less commonly shadows can be painful (milder than CH attacks). 95% of CH attacks are accompanied by tearing on the affected side or blocked nasal passage/running nostril on the painful side during the attack. Bad pain all day is not CH. Botox will NEVER work for CH. The metalic taste- may be medication side effect such as topiramate which can also cause tingling of hands/feet/face/tongue. Tongue tinging is a common experience with sensory aura of migraine- in which case it should fit with other aura symptoms. The aura symptoms do not exclude CH as an explanation of the left sided head pains. Experiencing more than one severe one sided head pain episode a day, and predictability of when an attack will occur ('circadian pattern') are commonly seen in CH. There are now many treatment options, guided by a neurologist/headache medicine specialist. Peace.

Yes, pretty normal. Lesser intensity pain between attacks? Also normal, commonly referred to as "shadows" This sucks @susie1984 - I'm no diagnostician, but "ridiculously painful, start behind my left eye and radiate down my face into my jaw and teeth and nothing is relieving them" sounds like classic cluster headache symptoms. Sorry you appear to have become a member of this club. If only there was some medical approach like botox that worked for CH like it does for migraines. BUT there are effective treatments!! The blue banner "New Users - Read Here First" at top of page here ^^^ links to some good starter busting info. That, along with the Basic Non-Busting Information could help you hit the ground running, and hopefully you'll be on the way to relief ASAP.

It makes me feel hopeful that more neurologist are becoming educated and familiar with CH. It's good progress for us bangers. Thanks for the share.

DAY 3 - Sunday We started our morning with yoga, lecturer, yoga teacher and yoga therapist Tiina Hemminki guided us to safe and relaxing journey, where one could notice the signals from our body following Tiina's soothing voice eyes closed. Yoga Federation of Finland has their own orientation of hatha yoga which is the one we did. Especially interesting were the notions how one can affect to different sides of your body just by thinking and also how we can guide our breathing via left or right nostril, in and out, using only your better non-Horton side for an example. (yoga moment starting and adorable Tiina) Next in line was OLKA coordinator Tarja Kulmala. OLKA means coordinated organizational and volunteer activities in the finnish hospitals. OLKA also helps non-profit organizations to reach their audience and connects them to hospital units. OLKA also has an app called Toivo (Hope) where you can find peer support for any condition you may have 24/7. We have done cooperation with OLKA right from the beginning. (OLKA coordinator Tarja) Last presentation of the day was an Art photographer and an Expert by Experience Riina Sorjonen who talked about peer support via her own story. Main focus was also on keeping up the inspiration in life and always looking for new fun things and not giving up on anything you have enjoyed doing in life. This too was something different and a beautiful closing performance for the great event. Planned Safe room sessions were cancelled due to lack of personnel but we had such an open, honest, wild, limitless and crazy vibe and discussions all the time that there really was no need for "safe space" - everyone and every space was safe. Presentation about psychiatric burden and psychiatric symptoms caused by Horton was cancelled as well. When planning the event we noticed that there seem to be no one in the local healthcare (psychiatry) that could talk about this subject - there were zero volunteers. So, this really needs to be covered next year. Tired but happy, until next year !

Can atogepant be a preventive treatment for cluster headache?-Insights from a case series Catarina Serrão, Filipa Dourado Sotero, Linda Azevedo Kaupilla, Isabel Pavão Martins Published in Headache on October 3, 2025 Link: https://doi.org/10.1111/head.15066 Abstract: Cluster headache (CH) is a disabling primary headache disorder with limited therapeutic options. Calcitonin gene-related peptide (CGRP) is known to be involved in CH pathophysiology; however, except for galcanezumab (300 mg) in episodic CH, anti-CGRP monoclonal antibodies did not reduce CH attacks in randomized clinical trials. Atogepant is an oral, small-molecule, CGRP receptor antagonist, which is approved for the preventive treatment of migraine. Here, we describe four case reports of CH (two episodic CH and two chronic CH), unresponsive to previous prophylactic treatments, who responded to daily atogepant (60 mg). Chronic CH cases were refractory to subcutaneous galcanezumab. In one case, a reduction to atogepant (30 mg daily) resulted in recurrence of headache attacks, which subsided on reintroduction of the initial dose. No serious adverse effects were reported. Despite the limited number of cases and the open retrospective design, our case series suggests atogepant as a possible prophylactic treatment for CH. Further research on CGRP signaling in CH and the implementation of well-designed clinical trials are necessary.

Hi CHfather - thanks for stopping in. This is the first case series I am aware of looking at a gepant and CH, in this case Qulipta / Atogepant. There is a trial looking at Nurtec / Rimegepant as a preventative therapy for CH. Ubrelvy / Ubrogepant is more an acute treatment owing to short half-life makes preventive use impractical and may not act quickly enough for acute CH attacks. I haven't read anything about the third generation gepant Zavegepant, again an acute treatment via nasal spray. I haven't really followed patient feedback on any them tbh. I think this case series, if anything, may provide some context for clinicians considering where to next for refractory CH patients non-responsive to other treatments, including anti-CGRP mAbs like Emgality / Galcanezumab - this suggests that atogepant may be worth a try. I imagine there may be a tendency to think if a mAb hasn't previously worked or stopped working as was the case for one of the cases, a gepant is unlikely to either. That being said, ya'll know I have had success with the vitamin D3 anti-inflammatory regimen and my personal view would be to exhaust the patient led treatments options that we have (busting + regimen) paired with abortives (oxygen and more recently DMT) before considering one of these new treatments because I am somewhat adverse to risk and there is no long term clinical data on their safety. For refractory patients for whom my heart truly aches, this may offer some hope - still, an early signal and a small case series.

Ok folks.....I can't take credit for finding the following and it was so cheap I thought it was a scam. So.....I ordered one before spreading the word. It came today and appears to be legit. Demand valve and hose for $50 US. Brand new, in the box. Ebay Link

If you have significant pain all day, and the attacks that seem like CH are "bursts" as you write (which I think of as briefer than a typical CH attack), and if a triptan doesn't help, it seems possible to me that you might have one of the CH "lookalikes," some form of hemicrania, maybe paroxysmal hemicrania (Paroxysmal Hemicrania: Causes, Symptoms & Treatment) or hemicrania continua (Hemicrania Continua: Causes, Symptoms & Treatment). I'm just guessing here: you can look to see how well the symptoms match. Unlike CH, hemicrania is generally not responsive to triptans or oxygen (or busting, except for some brief relief of maybe a day or two). So one test would be to take the medicine that treats hemicrania, Indomethacin. Another would be to try oxygen. As I say, I'm just guessing here. Sometimes people "try" Indomethacin, but the dosage isn't enough, or it's not continued long enough, to get a real test. This is the recommendation from the International Headache Society: "In an adult, oral indomethacin should be used initially in a dose of at least 150 mg daily and increased if necessary up to 225 mg daily. The dose by injection is 100-200 mg. Smaller maintenance doses are often employed."

ABSTRACT: Classic psychedelics and the gut microbiome interact bidirectionally through mechanisms involving 5-HT2A receptor signaling, neuroplasticity, and microbial metabolism. This viewpoint highlights how psychedelics may reshape microbiota and how microbes influence psychedelic efficacy, proposing microbiome-informed strategies such as probiotics or dietary interventions to personalize and enhance psychedelic-based mental health therapies. Psychedelics and the Gut Microbiome: Unraveling the Interplay and Therapeutic Implications https://pubs.acs.org/doi/abs/10.1021/acschemneuro.5c00418 A fascinating new view-piece synthesizing the current literature exploring psychedelic / gut / microbiome interaction in the context of depression. Wang and colleagues emphasise that "the baseline composition and functional state of the microbiome can shape psychedelic pharmacology and therapeutic efficacy, while the psychedelic experience itself can remodel the gut microbiome in ways that influence ongoing physiological and psychological adaptation." At the cellular level they note psychedelics suppress the production of pro-inflammatory cytokines IL-6 and TNF-α through 5-HT2A receptor-mediated inhibition of NF-κB signalling: "this immunomodulatory action establishes an anti-inflammatory milieu that favors the growth of beneficial commensal bacteria." Compounds such as psilocybin and DMT "reduce pro-inflammatory cytokine expression and enhance epithelial barrier integrity, promoting the expansion of anti-inflammatory taxa." They note, the microbiome is not a passive bystander: "gut bacteria express a variety of enzymes capable of biotransforming these substances, thereby shaping their pharmacokinetic profiles. For instance, Bifidobacterium species have been shown to affect the metabolism of DMT, potentially altering the intensity and duration of ayahuasca experiences. Similarly, in vitro studies have identified bacterial strains that dephosphorylate psilocybin into its active form, psilocin, suggesting that individual differences in microbiota composition may underlie variability in therapeutic response." Wang et al. refer early human data noting that "although human studies remain limited, early observations suggest that psychedelic treatment may be associated with alterations in fecal microbial diversity in patients with depression." These observations support what the authors call a "systems-level perspective of psychedelic therapy - one that encompasses not only neural targets but also immunological, endocrine, and microbial domains." The article is behind a paywall, send me a message if you'd like a copy of the article. For more reading the article cites this paper "Seeking the Psilocybiome: Psychedelics meet the microbiota-gut-brain axis" https://pmc.ncbi.nlm.nih.gov/articles/PMC9791138/ In the context of CH, with new evidence of persistent immune-inflammatory activity suggests psychedelic therapy not as acting solely on the brain but by potentially intersecting with the upstream gut-barrier-immune processes that maintain systemic inflammation that are now attributed as a causative agent in migraine. The paper also goes some way to positing a possible reason for the variations we see in busting efficacy. This area of research is fascinating and I think the piece provides a further and new angle as to the role gut health may play in CH alongside recent findings in migraine although there is much road to travel before we have any concrete evidence of this. Still mulling my thoughts, all I offer here is a view - always interested in yours. With respect, Craig.

One of the issues we as CH O2 users has been when we have both M and E tanks available to use. The M/Welding tanks use a CGA540 connection, and the E tanks use a CGA870 thus preventing swapping regulators between the two. While I've known of an adaptor that allows you to run M tank regs on E tanks, I've only heard talk of a device that allows to reverse, the ability to use a E tank reg on a M tank. Until now, I didn't think such an adaptor could be sourced, but I finally found it and have tested it myself. It works!! There is a nonstandard seal requirement, but that's easily met. You simply order the thick seals linked below and use them in place of the standard brass/rubber seals we normally use. I have no financial connection to these items, and this is for informational purposes only. You be the judge if this set up is right for you. The adaptor. The seals.

I think I have found a better deal for you. HERE This option will give you what you need plus a barb fitting for the mask as well so you can use either. Glad to help.

Agreeing with everything stated above, I would still consult your neurologist or a headache specialist in your area and maybe get scanned to rule out any other issues going on in your head. If the scan shows a woodpecker holding a drill and pushing on the inside of your eye you pass the test and are now an official member of the Clusterbuster community. Read up on this site and ask all the questions you may have and we all will help you get into a manageable place to deal with this. It sucks but you are in a great place.

Interesting, thanks for posting this. My Neuro has prescribed this for me at 60mg. I’ve not started just yet as I’ve been having some success with busting with 5-MeoDalt. Down to 1 attack per week and low pain shadows between. I was considering adding this layer on top. The cgrp blocker side effects of constipation and hair shedding give me the fear also :/

We have such an amazing community and it's hard to just pick a few people, so for our 20th we picked a few extra But seriously we have the best community- just wanted to give a shout out to these amazing people!

TUESDAY NIGHT October 7 at 7pm ET During the session, you’ll: ● Understand how gammaCore works to treat cluster headache, including the science behind vagus nerve stimulation and its role in regulating pain signals. ● Learn strategies for incorporating gammaCore into your care plan and understand when and how to use it effectively. ● Have the opportunity to ask questions during a live Q&A session. Register Now: https://us06web.zoom.us/meeting/register/SrvzB0d4RoiK4Dz8ITjvrQ

The recording is on our YouTube channel if you'd like to watch.

PACAP-38 in Cluster Headache: A Prospective, Case–Control Study of a Potential Treatment Target Marie-Louise K. Søborg, Nunu Lund, Agneta Snoer, Mads Barloese, Rigmor Højland Jensen, Anja Sofie Petersen Published in European Journal of Neurology on September 26, 2025 Link: https://doi.org/10.1111/ene.70341 Abstract: (partial selection) This large-scale study demonstrated increased PACAP-38 levels in all disease states of cluster headache compared to headache-free controls, strengthening the hope of a possible effect of PACAP-38 targeting treatments in future trials. The lacking correlation between PACAP-38 and CGRP levels should be interpreted with caution and needs to be investigated in future studies.

Here is a screenshot from one of the authors posts on LinkedIn. The research coming out of the Danish Headache Center is outstanding, I have recently shared the findings of their paper identifying the distinct cytokine profiles that distinguish eCH from cCH and also found that Oncostatin M was elevated in all 3 CH states.

In the US, the brand name for atogepant is Qulipta. In the EU, I think it's Aquipta. @Craigo, thank you for this (and for all your other great contributions to substantive knowledge about CH)! I notice that Ubrelvy and Nurtec are both also gepant formulations. Might we imagine that they would also help (it seems from the abstract that the contrast in this study is with galcanezumab (Emgality))?

Wow, that's terrible, sorry to hear it! If your neuro wasn't a headache specialist, well those are the ideal ones you want to see - it can be quite the long wait to get an appointment with one though, and that seems pretty universal, no matter what country you reside in. Last I checked, verapamil is known for lowering blood pressure, and is even prescribed for treating high blood pressure, so I wouldn't imagine your high blood pressure to be a verapamil side effect. I'll leave the T syndrome (or did they test for "T series"?) abnormality for others who may know about it. Sumatriptan injections have historically been prescribed in too high of a dose, specifically 6 mg, whereas doses of 3 mg (or even 2 mg for those such as myself), are plenty effective at aborting cluster attacks if caught at onset. It could be worthwhile to let us know what kinda sumatriptan and verapamil doses you have been prescribed - if you've been issued the big dose 6mg Sumatriptan (which I would have to think would increase risk of side effects), there are ways to split those injections:

Hi @philiph, Magic mushrooms Busting dosage: typically in the .5g to 1.5g (dry) range. Reactions: Tripping, during the bust, then often relief from CH following, but also brace for possible 'slapbacks' (increased CH activity for a day or two). How long it takes varies, with 3 busting doses spaced 5 days apart an often successful protocol (for episodics anyway). It works for an impressively high percentage of us, but not 100% of us. DBS anecdote: One chronic member here had the DBS with no success, then eventually tried the mushrooms and got some very significant, sustained relief. The Blue 'NEW USERS - PLEASE READ HERE FIRST' banner at the top of the page links to more busting info.

Usually Amazon has some, but it appears that right now that none are available there. You can configure one with a DISS fitting at WT Farley Here. E tanks regs are easier to source. I've also found an adapter that may work but am waiting on the proper seal to make sure its something i can recommend. There may be others but ATM I can't locate any. Ill keep my eyes open.

This link for it that I received in an email functions for me: https://thethirdwave.co/webinar-cluster-headaches-and-neurological-disorders/ If it's still not working for you, maybe trying it in a different browser or something might be worth a shot?

I generally only check these boards once a year, but I thought this was an interesting time to chime in. I didn't start having clusters until about 2015, and I left the Army in 2008. I also didn't file for disability until last year (January 2024). I did a lot of research before filing my claim, and from everything I could tell getting clusters linked/approved was almost impossible (I found lots of appeals denial letters which are public record). I had an awesome C&P examiner, and after discussing everything I believe she wrote up a very convincing argument to link them, although I don't know exactly what she wrote. When I filed, I believe I had it as secondary to PTSD. But I did also mention that I had a migraine (my first and only) at the very end of my service. I don't remember the exact details, except that I know we had already moved off base because it started on the drive home from base right before I started terminal leave. In retrospect, it's very possible it was my first cluster attack, although it was also a one off event. All that to say, I never saw anyone in the military for it. Additionally, a big thing with any headache for VA is it needs to be debilitating, and frequent. This is where I think a lot get denied, because episodic clusters won't get rated (almost everything uses migraines as a template). Luckily (or unluckily?) for me, when I was filing, I started seeing a therapist for the PTSD which caused me to have the longest cluster period I've had, lasting 5 months or so. The examiner decided that even though 2015 until 2023 had been episodic, that I was, at the time of the examination, chronic. I also made it clear that cluster headaches prevented me from having a normal work schedule, because once they come on that's it. In the end, I was rated at 30% for them, which I think is a miracle.

Our finnish conference was a complete success. I still don't understand how, with our limited resources and fuctioning brains available. This time we were in my hometown Seinäjoki, it's a bit further away from larger cities. Nice round-shaped hotel called Sorsanpesä (Duck's Nest) surrounded by nature, by the river. Here's a short rundown. DAY 1 - Friday No official agenda. We were welcoming people arriving at the hotel and spent the whole evening sharing stories and having fun, getting to know each other. DAY 2 - Saturday President of Suomen Horton-yhdistys (Finnish Horton Association) Julia Bergroth and treasurer Toni Taipale opened the 2nd ever Horton Conference at 9am saturday. (Julia and Toni opening) We now have a medical advisor of our own, GP Risto Rapila with staggering amount of Horton and ER experience. He is a magnificient person and absolutely priceless to us. Risto presented about our typical problems and possible relief in the future, and also what people with Horton are using already by themselves and why our treatments work. (Risto and Mikko (Horton patient) were interviewed for the local newspaper) Neurologist Matti Ilmavirta presented the injection treatments again like last year and we also had a demonstration about them. There are only few doctors here with an expertise such as Matti's and these options should be available more widely. Matti has trained a few younger doctors for these procedures. Woikoski delivers medical oxygen in Finland, they had a presentation. (Tiina from Woikoski presenting) Then time for some oxygen demonstrations, discussion and questions. (Toni and Aapo explained oxygen) Niklas Koponen talked about coming down the "Horton stairs" and climbing on a hills instead, finding enjoyable views and activities in life. Are you able to get rid of this condition combining the right treatments (psychedelics) and having happiness as a permanent goal in life? How to first treat your own children, then teach them how to manage with Horton when you are not around anymore to guard them. This was "something different" Medical director of local neurology unit, Jari Kankaanpää did a comprehensive presentation about orthodox treatments and the discussion was about lack of functioning treatments. Toni from Finnish Horton Assocation (Suomen Horton-yhdistys, in finnish) talked about the history of our association and before that, a patient community. He also covered the meaning of Clusterbusters in our existence and other international connections and stories behind things. Final presention for saturday was by an acupuncturer Veera Majamaa who shared her techniques of rather simple acupuncture treatment specific for Horton. She shared a treatment guide and everybody was able to try needling on themselves (on the top of the head). So there were a lot of clusterheads walking around with needles in their heads (Acupuncture by Veera Majamaa) Unfortunately there were quite a few cancellations. We were supposed to have body workout for issues one might have in their body created by Horton attacks, personal training session and material you can take home to prevent these issues. There was also a presentation about what Horton does to your ability to work and function and how to cope with this in society. Hopefully these will be included next year. Many of the presentators were Horton patients themselves. I will add sunday later ...

Joe Stone tells his moving story.

Dr Emmanuelle Schindler sends us a pre-recorded update on DMT.

Day 2 ..... Dr. Christopher Gottschalk spoke and I managed to mess up the photo.... Next, Anna Kim gives a excellent supporters viewpoint.

About to start registration and presidents reception!! Supposed to be around 80 first time attendees!!

I appreciate i am very late to this conversation but I just want to drop in that red bull is now a key part of my armoury the moment the dreaded knock kicks in. I will post a detailed synoptic of my experience in coming days but for anyone suffering right now, seriously consider taurine. To me it's a life saver but I do have to say we are all different and some of us have intolerances and other complications so do be conscious of your personal needs. But if you don't have an issue with caffeine and taurine give it a go. Pour on lots of ice and gulp it freezing cold so it hits the back of your throat which is the nearest you can get to your pituitary gland without poking a hole in yourself. The cold soothes the brain and the taurine does some magic and at least dulls the agony. X

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.

Thanks so much. I go to the beach a lot. Whilst there I never get attacks or shadows the entire time. I'm always trying to keep myself busy and you are right, it does help so much. It's just the nights that it gets me. It's like I am not allowed to rest. Weird.

I only massage the area whilst taking 02. It's a hectic feeling. Subconsciously, body is expecting an attack. Sorry buddy, I hope you are ok today. Yup my wife said that my eye has almost shut. But I'm ok today. I am gone 4 days now without an attack. Counting till at least 7 days so I know this nightmare is over once again. I really hope so then I can resume normal life once again. Can't wait for this season to be over.

I had quite a brutal attack at midnight. This morning my eye was swollen and side of my head as well. Busting pain on the affected side since I woke up. I couldn't tell if is a hectic shadow or aftermath of the attack. I tried O2 for a while but didn't settle this pain and discomfort. Still have it at the moment. Pain med not helping. Anti-inflammatory as well. The anxiety is overwhelming since subconsciously my body is expecting a CH What do you guys suggest in this situation?

It sounds like you are getting the eye droop? I used to get those once in a while but not too much lately. Do you do stuff like press on your eye or slap you head? I really try to avoid those things. Many CH people have squished their eyes to heck. As for shadows, they def can vary and some are so strong that it's not far off from attack level pain! Hang in there warrior, I too had a huge set of attacks last night and I am trashed and full of shadows today.