Jamesmsv

It's the 1am-ish part that niggles at me. As far as I'm aware ( please correct me if i'm wrong) there has been no satisfactory explanation for the 1am phenomenon which, in my opinion, is probably one of the most common symptoms of all CH sufferers. My wife is often still awake at that sort of time and is astounded when I'm in a deep, snoring sleep and go from complete stillness to suddenly sitting up at 12:58am clutching my head. This biphasic theory suggests there is a part of our circadian rhythm that wants us awake circa 1am. Surely there's a connection to be made; I hope there is a neurologist specialising in both sleep and cluster headaches out there who latches on to this. Ideally - and this is obviously a very unlikely scenario - we need to find a CH sufferer who is desperate enough and flexible enough to switch to a bi-phasic sleep pattern for a minimum of 2 years to see if it helps. Any takers?

Came across an interesting fact that I've never seen mentioned in relation to cluster headaches - our apparent natural "biphasic" sleep pattern which was common up until the industrial revolution. It varied across populations but in this particular article is referred to as: "between 9 and 10pm, slept for 3 to 3 ½ hours during their “first sleep,” awakened after midnight for an hour or so, during which individuals did practically anything and everything imaginable before taking a “second sleep,” roughly until dawn." https://www.news-medical.net/news/20170517/History-of-sleep-what-was-normal.aspx This just so happens to coincide with the 1am wake cycle most CH suffers experience. When at the peak of my worst cycles I also commonly get 9-10pm and 6-7am attacks, which slot in nicely to the start and end of the bi-phasic sleep period. It appears through a study in the 1990s that this may be the most natural sleep/wake cycle for our brains (see https://en.wikipedia.org/wiki/Thomas_Wehr) I find it hard to believe that this is just a coincidence. Has anyone else come across this aspect of sleep behaviour in relation to CH? It may be a piece of the puzzle as it is very much governed by melatonin from what I've read so far.

Very interesting line of thought, are you planning a trial of one of the supplements listed in the selfhacked article? Please keep us posted.

I am positive there is some connection between migraines and CH, but my own experience is not particularly in favour of psychedelics helping migraines. Until my late 20s I had occasional migraines and no CH, then when CH started I got no migraines ever - so whatever happened to my neurochemistry affected both conditions. The past 2 years or so I have been using RC seeds to treat my episodic CH with probably a 80-90% chance of them aborting a cycle, it rarely fails. However, it is very common since taking RC seeds for me to get one or two migraines after the 3rd dose and this signals an end to the CH cycle. I have started getting occasional migraines in general again after a >15 year remission. Therefore this suggests to me that LSA (or RC seeds specifically, NOT mushrooms) definitely affects the migraine circuit of my brain but , in my case, not in a positive way.

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.

This prompted me to go down a bit of a rabbit hole and it appears that there are some researchers looking at CH in the wider context of sleep disorders. This is a good summary page to start: https://pubmed.ncbi.nlm.nih.gov/19272283/#:~:text=Patients with cluster headache (CH,an associated abnormality in CH. An interesting quote from one of the papers: "Further, it is made plausible that the headache attacks are but one aspect of a more complex syndrome of central dysregulation manifesting as sleep-related complaints."

Thank you for clarifying, it's good to get a professional opinion on these things

This is where we start to diverge - I occasionally get panic attacks during a cluster, most often when I know it's going to end up as a 10, or of a 10 has been going on longer than usual. But I would class that as a pretty natural response given what's happening, rather than a traditional panic attack which I understand can happen at any time. I don't get ringing in my ears but do occasionally get a tinnitus kind of piercing sound - but I attribute that to sinus problems (which I'm sure is part of the whole CH problem when looking at the big picture). I also have permanent Horner's syndrome as a result of the CH. It's so frustrating isn't it? I bet if 10 more people answered this thread they too would have different co-morbid conditions.

I know what you mean, it is very hard to describe. The worst part for me is not anything that happens to me physically, it's the lying there wondering if an intruder has just smashed down my front door. But over the years you start to recognize when the sound has come from inside your head and not externally, most of the time. It's not something I've paid much attention to in the past and I can't say for sure, but I am sure that during a cluster cycle I don't get EHS. But it's much harder to correlate those two things, EHS for me has been far less regular than CH, it might just be coincidence. xBoss, if you don't mind me asking, has there been any discernible pattern/ timetable to your EHS?

I can confirm it is completely painless, it's simply a weird sensation like hearing someone slam the bedroom door. I had always thought it was a natural part of dropping off, like those odd occasions when you are jolted awake by the literal feeling of 'falling' asleep. I'm quite surprised it's classified as a condition, I can't say it has any effect on my life at all as I only get it once a night. Regarding any potential link to CH I don't think we can rule something out just because it's pain-free. The fact calcium channel blockers are used to treat EHS and it's related to the sleep cycle (and therefore the circadian rhythm) means there should be some cross-over with CH in terms of what the brain is doing (or doing wrong). But if I'm the only one here to suffer from it I guess there's no meaningful correlation to pursue.

I have suffered from this all my life and thought it was normal, until I heard it mentioned on some programme or other. It is far more prevalent than CH but still relatively rare. I would be interested to note how many sufferers here also have this condition. One red flag for a link to CH is that a suspected cause of EHS is temporary calcium channel dysfunction. Calcium channel blockers have been used to try and treat EHS, I am not sure how successfully. More information : https://en.wikipedia.org/wiki/Exploding_head_syndrome

Sorry to hear that. I too am back on the board because of my first 1am attack for a few months. I find that high pressure weather systems can aggravate my symptoms, I was pinning my hopes on that being the case this time round for any UK sufferers. I recently made the switch to RC seeds and am about to try an increased round of doses to knock it on the head. Fingers crossed - but this is what happened with psilocybin and it eventually stopped working for me (at least at the doses I was willing to risk). Good luck with your bust, hopefully it's just a blip.

I don't think this is particularly new news but I read that, in the last decade, studies have shown a particular class of antibiotics can cause permanent nerve damage. They are known as Fluoroquinolone antibiotics. It occurred to me that, with the prevalence of antibiotic prescriptions, could this be a common factor amongst CH sufferers? Without asking for my entire medical history I cannot be sure if any I've taken in the past are within that class, but it's certainly a possibility. The risk of nerve damage is small, but so is the prevalence of CH. Here's a link to a good article on the matter: https://neurosciencenews.com/antibiotics-nerve-damage-13083/#:~:text=Common antibiotic may increase nerve damage and peripheral neuropathy risk,-FeaturedNeurologyNeuroscience&text=Summary%3A Fluoroquinolone antibiotics%2C such as,neuropathy associated with amoxicillin use.

I too developed permanent Horner's syndrome a couple of years into my life with CH (about 10 years ago). I think it's just another one of those things we have to live with unfortunately. It's an odd one for sure, because Horner's signals nerve damage somewhere, so on the face of it (pardon the pun) one would think it logically has some connection to CH. But not everyone with CH has Horner's... so we end up chasing our tails again as with so many other branches of investigation. I've become more sensitive to light as a result I think, but that's just a subjective observation. I don't think it's had much effect on my day to day life which I hope is the same for most others who have it.

I ,too, fall on the side of the fence where exercise can be a trigger. Not only that, but any repetitive movements on my left side (where I get attacks) can also set it off - things like bowling, sweeping, painting a wall etc. So it's not just a high-energy oxygen/ bloodflow thing going on as there's very little excursion happening. I also have Horner's syndrome on my left side, which always becomes more prominent (constricted pupil and droopy eyelid) during bouts. Horner's has a few causes which can be hard to pin down, but I did wonder if the nerve problems it indicates could be aggravated by exercise/repetition, and whether that in turn has a knock-on effect to the clusters. Over the years I have filled out many questionnaires (as I'm sure many here have), I wonder if anyone has produced a matrix of symptoms, conditions and triggers that compare these things? I've certainly not seen one but would be very interested in the results if they are available. This thread alone shows the strange variations we see between patients, it's all so frustrating.