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Jamesmsv

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Jamesmsv last won the day on February 25 2020

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  1. 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.
  2. 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."
  3. Thank you for clarifying, it's good to get a professional opinion on these things
  4. 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.
  5. 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?
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. It's now been another 10 days since my first post and I thought I'd update on my experience thus far as it's always nicer when a thread like this can have a firm line drawn under it. In those 10 days if anything I've seen a slight worsening of the bout again - so anything the TENS was doing, it was not a long-term solution. It does still provide relief from shadows during the sessions but the nighttime attacks have returned slowly. I also busted again last Friday night and seen little improvement, but it's worth noting because I was not performing this as a TENS-only exercise. My final conclusion is that, like many things I've tried, the TENS provided some intermittent relief but is not something to get excited about. Due to the safety concerns raised by other members I can't recommend it.
  13. I definitely see some sort of link between CH and migraines. I grew up suffering migraines in my teens and twenties, then when clusters came on (when I hit 30) the migraines stopped. A couple of years ago I started busting and had no CH for 2 years, but did have a few migraines. Aside from noticing that, I'm afraid I hit a dead end when wondering what to do with that information.
  14. Thank you both for the information, that's the kind of thing I was struggling to find online in terms of understanding why one can be safe and the other not. I have edited my opening post to direct readers to the replies highlighting the risks. I read in one of Peter Goadsby's papers that CH are very resistant to placebo effect, so I don't think my recovery so far has been down to that. It may be that, for whatever reason, the psilocybin took longer to reset me this time and that is the true reason for my bout reducing to mere shadows. That is one of the biggest problems with finding these 'home remedies', they're very prone to unforeseen interference. Or it may be that TENS can provide the same results as GammaCore but with much higher risk. Pebblesthecorgi, I am sorry GammaCore did not work out for you. I understand Kings College London finished a preliminary psilocybin trial in 2019 that suggested the drug was well-tolerated by patients, implying that further trials would be easier to authorize. Out of all the treatments over the years I still believe that psilocybin in some form will provide the universal and relatively risk-free relief we all seek.
  15. As an update to my earlier post about the specifics of my own TENS machine, unfortunately the manual does not provide any details on the electrical signal used for each level or setting. This is prompting me to consider another purchase of one that will enable fine-tuning or at least gives me the necessary information for each setting. I have re-read the gammacore literature ( https://gammacore.com/wp-content/themes/gammacore-p2/pdf/gammacore_IFU.pdf ) and it is definitely contradicting the general NHS advice on neck placement. This would strongly imply that the NHS-approved device has been proven safe when used on the side of the neck. Whether this information translates to TENS, who knows.
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