Jump to content

Jamesmsv

Advanced Members
  • Posts

    27
  • Joined

  • Last visited

  • Days Won

    1

Posts posted by Jamesmsv

  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. 

    • Like 3
  2. On 8/23/2020 at 4:48 PM, Into Light said:

    i just found out sleep apnea can be a cause of cH too.. interferes with sleep cycle and that messes with the hypothalamus which sets sleep cycle. it is thought [mea culpa, can’t remember medical citation] that CH often hits during transition feom or to REM.

    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."

     

    • Like 1
  3. 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. 

  4. 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? 

  5. 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. 

  6. 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

    • Like 1
  7. 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.

  8. 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.

  9. 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. 

  10. 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. 

  11. 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. 

    • Like 1
  12. 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. 

     

    • Like 1
  13. 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.

    • Like 2
  14. 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. 

  15. My problem with that is that it seems to be a direct contradiction to using the GammaCore on the side of the neck. As it is deemed safe to use TENS on the back of the neck (ie nearer the spine) I would be surprised if a side-of-neck placement is more dangerous when it comes to the CNS, at least at low levels. 

    In response to your question on my particular unit, I have not tried the other two pads yet so do not know how that would affect my results. When it comes to the specifics of the pulse I'll have to refer to the manual when I get home - the unit I purchased had the presets that I mention but the display doesn't tell me the frequency or any other technical info. Hopefully the instruction manual will enlighten me.

    In hindsight I would have specifically searched for a unit that allows complete control of the electrical signal, so as to copy the GammaCore's advertised pulse characteristics. 

     

  16. I think now would be a good time to direct people to a page from a trusted source like the NHS on the safe use of TENS machines : https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/

    There seems to be some contradiction here with GammaCore. It is advised not to use TENS on the side of the neck, but that is precisely where GammaCore is meant to be used. One would hope that the safety of GammaCore has been thoroughly tested in this regard - but the variable signal of a TENS machine could be an entirely different matter. 

    Everything I find is very vague and no more detailed than the NHS information unfortunately. I had assumed the danger of neck-use was more related to muscular closing of the airway than a risk to the brain, considering the back of the neck is listed as a safe place to use it. 

  17. Thanks for the reply. Regarding the stimulation, the TENS machine I bought has 15 different settings (!) that are supposed to mimic different types of massages, but I am keeping it simple for this round of treatment and sticking with a simple pulse that is roughly on for two seconds, off for one second. I keep it on the lowest intensity as, even with that, I can feel my neck muscles contracting. 

    As for positioning, I am still experimenting but following some simple rules, based on what I experience during an attack. A TENS machine requires both pads to be attached to the skin for the signal to flow, so I am currently trying:

    1) First pad - on the side of the neck in the same area GammaCore is meant to be sited (near the pulse/windpipe area). I find quite high up just below the jawbone works best for me. 

    2) Second pad - this is where I am still experimenting most. During an attack I often need to press very hard on the back of my neck, just to the left of the spine and level with the top of my jawbone/bottom of the hairline. So that is 2nd Pad Site 1. I have also tried lower down where the neck meets the shoulder, as I find pinching that area very hard can sometimes reduce the pain a bit during an attack. That is 2nd Pad Site 2. 

    My only warning to people would be that both GammaCore and TENS machines advise strongly against any contact with the upper cranium, which I am taking to mean the temples and the left-side of the head above the ear which is so often one of the most painful areas. It may be tempting to try the pads there but I won't personally be attempting that.

    Because the daytime session is 3 x 2-minute bursts, I find myself re-positioning the pads for each burst to Site 1 or Site 2, or somewhere in between. This will make it harder to work out if one site is better than another long-term, but right now it feels like the right thing to do. 

  18. ***EDIT*** please read the replies below my first post to understand possible risks***

    I have been suffering from CH for 12 years this year but this is my first post on the forum as I didn't have anything new to contribute - but I seem to have found a preventative that is working, at least for me. In 2016 I came across all the talk about psilocybin and it gave me nearly 3 years of virtually no attacks. Unfortunately this year it didn't work, simply shifting my Sept-Nov period to this January and February. Re-dosing at recommended periods had no effect, it is like my brain is just ignoring it this time round (none of that 'resetting' feeling either).

    This prompted me to begin a new search online for updated treatments, which led me to the GammaCore product. I was skeptical at first, especially of the £650 price tag it's estimated to cost the NHS for a 3-month trial. But looking at the technical specs it seems to be nothing more than a TENS machine adapted for more convenient use. So rather than go through the hassle via the NHS, I took a punt on a £30 TENS machine.

    The GammaCore literature explains that it can take a couple of days for the treatment to work (3 sessions a day, plus at the onset of the attack), so I wasn't expecting immediate results. Here is what has happened to me so far:

    - Current situation is being about 2 weeks into what is usually a 2-month bout, starting to crescendo with sometimes multiple KIP 10's a night, plus one or two daytime attacks. In the past month I've had four doses of psilocybin with no success.

    - Day 1 - placed the TENS machine pads on my neck for two sessions. Shadows reduced to virtually nothing during the treatment. That night I woke at my usual time with a KIP 5. I attempted the TENS but it immediately ramped me up to a KIP 10, so I gave up on that as an abortive treatment.

    - Day 2 - did the three suggested treatment sessions (each session is 3 x 2min bursts). No attack that night, had my first full night's sleep in 2 weeks.

    - Day 3 - treatment continued as usual. On the two occasions I felt a daytime attack was on the horizon (shadows slowly getting worse, you know when you feel one is coming on...) I did another treatment and the attack never came.  No night attacks, another full night's sleep.

    - Day 4 - as per day 3

    - I am now on Day 5 and am seeing continued improvement in my daytime shadows. 

    Obviously this is early days but I have never had a CH bout which had a 5-day remission mid-bout. It would be highly unusual. Now, I do acknowledge that what I am experiencing could be the delayed action of the psilocybin, but I do not think so. The reason I am confident the psilocybin didn't work this time is that the very distinctive feeling of my brain 'resetting' was not present. The fact the TENS immediately reduces my shadows during a session also points to there definitely being something good going on. 

    I know through bitter experience that a lot of things people suggest on these forums will only help some and not others, but if my posting this can help at least one other person find some relief... 

    Finally a disclaimer - I am not a doctor or qualified medical professional. I believe, from reading the GammaCore and Tens machine literature, that it is safe to administer TENS treatment to the neck area, but this is a personal opinion only. 

    If anyone else tries this and it works, please let us know. 

×
×
  • Create New...