Dr. Julie

If you're in Canada, yes you can. Both the dried product and microdosing capsules. Oh, and psilocybin edibles too, which I didn't even know were a thing.

Me also, and confused in the sense that anything happening in the hour or two afterwards will be lost to me the next day.

Have you tried online purchases? There are reputable sites.

You should be able to access Ketamine treatment, has your doctor tried this? Have you discussed it with him? It's approved treatment for exactly what you describe and highly effective for 50%+ patients. It's a low dose supervised IV drip that gives relief lasting weeks and sometimes months. This is the treatment they took out of clinical trials to give it special approval because it was so effective it was unethical to have a placebo group that wouldn't be able to access it. https://www.nimh.nih.gov/about/director/messages/2019/new-hope-for-treatment-resistant-depression-guessing-right-on-ketamine.shtml

Yes, just as THC is stored in fat cells. If you're a fat stoner like me, losing weight feels awfully good

Emgality blocks a specific signaling pathway associated with attacks in a subset of CH patients. If the mechanism of your CH is on this pathway, then you are likely to get help with this drug; if not, then it's unlikely to have any significant benefit. As FunTimes said, if you can access it free/low cost it's probably worth trying if that's what your doctor's recommending.

I don't have tinnitus any time but I do get pretty strong ear pain when I'm in cycle and especially when I'm having an attack. I'm not surprised many people have tinnitus.

Steroids suppress immune responses which is why it affects psoriasis and why it can help CH early on as patients wait for their med dosage to work but it has a broad effect. I am very interested in the actual mechanism that skews immune polarization (psoriasis is associated with Th2 profile) in correlation with CH.

Yes, it suggests a shift in the immune profile, it's not about the mechanism of the pain itself. As an immunologist this is incredibly interesting to me, thanks for sharing. If you think of anything else, I'd love to know. julie

I'm wondering if any other CH sufferers also have psoriasis and if so, do you experience any changes that correlate with your CH cycles at all? I ask because I've had scalp psoriasis for 30+ years and it disappears when I'm in cycle. I've never been able to shake it before, ever. It comes back when the cycle ends unfortunately but I can use it as a sign when a cycle is starting or ending. Julie

I'm sorry, but no. This hypothesis makes some giant leaps although I understand that it seems unclear. "Nerve damage" is far too generic to link together disparate reports. More importantly, research suggests CH is signaling failure originating in the hypothalmus, which is consistent with our symptoms and pathology. Our pain may be mediated via the trimengial nerve but not because of primary nerve damage. Julie

The bleeding and length of some of her attacks are out of norm. Plus she says she gets no relief from O2. It may be she's not getting high enough flow rate, etc. While the description is consistent with trigeminal nerve, that doesn't mean the mechanism is the same. She absolutely needs an MRI to exclude other causes. If it's atypical CH, she needs a specialist better able to manage it, I think. julie

Hi Spiny, If your perception is that you dream 'early' in your sleep cycle and if you have any other symptoms suggesting dysregulated sleep or sleep deprivation, it may be worth getting sleep study. Rapid onset REM-stage sleep is a classic feature of Narcolepsy, or if you feel like you 'dream all night' it could a result of repeated arousals during REM sleep (like me, I have severe REM-stage sleep apnea). To be clear though, if you're getting restorative sleep and not having any other sleep-related issues, it's unlikely there's any significant problem. I'm new on cluster science but I've become quite expert on sleep disorders over the past 20 years. Several are mediated in the same area of the brain, involving the same signaling pathways, as are described for cluster patients. I'm not surprised at all that there is overlap and I think as the science progresses we'll find sleep disorder comorbidity is more common among CH patients than not. Julie

A few people were interested in my comments on sleep and psilocybin. I first began looking at it because it linked in with PTSD/REM-behavior disorder and the hypothalmus, both of which are elements of the rare sleep disorders my son and I experience, and of course for many CH patients their attacks seem to have a relationship with REM sleep, let alone also originating in the same area of the brain. For your interest, here's a brief commentary from a neurology researcher on cluster and sleep

Hi Omar I am a Canadian in Montreal and newly diagnosed (formally this year). This cycle has come on strong and hard, multiple daily attacks, 8 weeks so far. I am early in my journey treating this but I am also a research scientist (Immunologist) and have reviewed the literature on psilocyban/LSD even before I became a CH patient. I am making plans as we speak to try a busting treatment. You are welcome to contact me if you are interested in discussing my experience. Julie

Ubrelvy is a CGRP antagonist, similar to Emgality. You can check those posts to get an idea what to expect (remember it won't be the same, just in the ball park)

While I would normally say that drugs don't often crossover well migraine-to-cluster, in this case Nurtec is a CGRP receptor antagonist to the same effect as Emgality. They have a different mechanism to achieve the same purpose. Nurtec is a binds/blocks the receptor while Emgality uses antibodies to sequester the signaling molecule so it never triggers the receptor. I think it remains to be seen how well it works and whether one approach is better than the other but several people here could give you feedback. Since Nurtec is blocker I expect you'd have to take it more often (it will turn over faster) and Emgality is monoclonal antibody which usually lasts ~3-4 weeks, depending on target. So if you want to try it, maybe look at costs/insurance when you pick. If you tried Emgality with no success then I'd have low expectation from Nurtec, sorry.

Verapamil is a go-to treatment to help prevent CH and is a calcium channel blocker.

Hi I'm new here myself, sorry to meet in these circumstances but I feel like I really understand you on this one. So far Verapamil has been really good for me at seriously reducing the pain level of the attacks but I'm still left with shadows/brain fog/pressure right on time too. One piece of advice here I've found really helpful is to figure out your triggers, often items that aren't a problem outside of a cycle. As I discover mine and eliminate them from my diet I'm finding that the none of the shadow pain ever goes over a 2 or 3 anymore. It's the trigger that spikes the pain level for me it seems. Sadly, caffeine in any form is a no-go for me. Also chocolate. And any food of any temperature, hot or cold. Because of course, lol. Nice to meet you Julie

Thanks Spiny, but it's the caffeine itself not the coffee, it's still a problem with teas and colas so I guess I'm switching to decaf everything for a while. I'm only disappointed because so many here say caffeine is a big deal to help relieve attacks and seems to be one more tool I can't use. Oh well, such is my life

Hi Monica, I'm new here too but have also observed similar changes. My jaw seems out of line and anywhere near a hit my teeth on CH side become hypersensitive to any temperature up or down; for the last month everything I've eaten or drank has been lukewarm. I already had weight issues pre-CH involving hypothalamus so I found it interesting that from my first attack on I've lost all appetite. I have to force myself to eat to manage my blood sugar and I suspect low blood sugar contributes to my shadows. I am also not a fan of pasta or potatoes yet those are some of the few foods I can tolerate right now and suddenly really like. Screens and lights don't bothers me, although I'm exhausted after an attack and don't like it too bright then. My most interesting observation has to do with vagus nerve. I was extremely sick 6 years ago and was left with several symptoms associated with vagus signaling, which in some diseases has a relationship between gut and brain. Of course vagus nerve signaling is linked to CH as well, which makes me think my original illness may have contributed to my development of CH. Checking for triggers has become really important for me. Sadly I think pot may be one for me as with several others. It never touched the pain but it helped with the sense of distress and agitation that comes with it. Nitrates from cured meats are on my list. And this week I'm testing caffeine for final confirmation. This is huge blow, I love coffee, particularly since everyone seems to use energy drinks at a treatment but it's the other way around for me at the moment. Any hint of coffee and I'm shadowing within minutes, the more I drink the stronger/longer the attack comes on. Interestingly when I was pregnant, caffeine triggered morning sickness - which made me the weirdo of the pregnant crowd at the time - so I don't wonder if it's just that caffeine and I have a funny relationship. I'm sorry we're on this journey together but here to support. julie

Thank you everyone for the warm welcome and excellent information! Covid has kind of messed up the system a bit. My GP referred me to neurologist but in the meantime sent me to the ER immediately for a neuro consult there to get treatment started. They gave me Verapamil (pill) but I was back again an hour later with bad attack and they shot me up intramuscular which made a difference. After that attack I was pain-free for 14 hours, it was amazing. Enough time to fill my prescription and make sure the level stays up (240 mg/day, x3 pills @80mg each). But I haven't major attacks now for 36 hours, just maybe shadows on schedule that are a Kip 4 and much, much shorter. What a relief. I'm nervous that it won't hold but also very hopeful that I'll be responsive to the treatment. I'm looking into busting and intend to try it in the near future. I'm a research scientist and due to unusual sleep-disorders in my son and myself involving the hypothalamus/REM/Circadian rhythm I had already researched psil/MM in that capacity a few years ago so I'm firmly behind its efficacy. Thanks again everyone!

I didn't read all of the replies so I apologize if someone's mentioned it. I'm a new patient and completed the registry survey -can I suggest you include a button to return to the homepage? Or forum page? It doesn't matter, just that when you finish the survey you're stuck there unless you back up through the survey. Only if it's an easy fix, it's not like it's a big deal.

Greetings from Canada! I am a newly diagnosed/in process CH patient and I'm really happy to have found this forum. Until my first attack 4 years ago I had only ever heard the name cluster headache (via Lisa Kudrow, of all things) but I knew nothing about the pathology. Now I've gotten some info but also many more questions that I think can only be answered from experience - and it sure goes a long way just to talk to people who understand. I've already walked this path having spent 17 years getting a diagnosis for severe REM sleep apnea and my son has a very rare sleep issue himself. I have a whole side of my family I'm not sure I'm even going to tell, I just cannot take on that mountain again right now. I mostly wanted to say 'hi' and the rest is the background of my experience until now, so go ahead and stop here unless you're interested in that too As far as the CH goes, the very smallest silver lining (minuscule even) may be that my first attack 4 years ago was absolutely canonical for CH and I'm not a person to get headaches of any kind to begin with so diagnosis seems a bit easier. Because I didn't know about CH at the time, when I woke up (2:15 am, who's surprised?) and first saw my face I thought I'd had a stroke or aneurysm on my right side. Only because my right nostril was stuffed and eye streaming while the rest of my body still worked did I pause to check differential diagnosis. Of course the only hit I could get for my symptoms was CH. It fit perfectly so I waited it out instead to see if it resolved; two hours later it was over so probably not a stroke. I had another shorter bout two nights later and then...nothing. This was at an incredibly stressful time in my life so I hoped maybe it was a one-off and took a wait and see approach. Two years later it happened again, this time on the left. But again a single headache, only 40 minutes each this time, on three nights spaced over 5 days - not really much of a bout. I still waited on it, I had so much else on my plate. Only a year later next, 2019, this time two attacks a day over 8 days. I told my doctor and got an MRI, no aneurysm, no tumor found. I was doing some other testing so didn't rush to the neurologist yet so we could provide all those results as well - I figured I had a year, right? Hah! December, left side, 1 per day, 5 days, now centered on my temple/cheekbone but only, say, an 8/10 and not the 10/10 of my first bouts. I told my doctor at my next appointment but I was leery that it didn't seem painful enough relative to earlier/was relocated plus other indicators kept possible MS on the table. March, left side, 2 per day, 4 days, again at my temple/cheekbone May (now), right side, 4-5 attacks per day, 90 min, mostly temple/cheekbone again, 9/10, 22 days so far and counting. My doctor's appointment is in a few days but ER doc a few nights ago took my history, did a mini-neuro, checked my records, diagnosed CH and prescribed Zolmitriptan to tide me over until my appt on Tuesday. So that 's where I'm at. Now that I've learned more about CH, some of the symptoms that kept MS possible fit CH even better, so we're thinking it's primary CH and a neurologist will confirm it I guess. Of course I have many questions, most especially the attack escalation for this cycle. Was this a common experience for you early in your CH? What is the likelihood that the cycles will establish themselves at this level? It hasn't ended yet so I have no idea how long it will go, it's already 3X longer than ever before yet I'm only at 3+weeks and I'm know that many suffers here I've read seem to cite 8-10 week long cycles at minimum, so I really don't have it so terrible in that light. On the other hand, if I'm also looking at 4+ daily attacks at 90 minutes each for that many weeks at a time it will pretty completely disable me during that period without effective treatment, so I am naturally hyper focused on your experiences with treatments while at the same time trying not to panic at the idea of my life collapsing. You know how it is. That's all I've got right now, but I look forward to getting to know you all better and participating in the community