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