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ClusterBusters

Oli

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Everything posted by Oli

  1. Oli

    Taurine! WOW!

    Hi All, New user here, long-term sufferer - read on saturday night about the Taurine and Caffeine mix - just wow! Wish my doctor could've reccomended this, i feel jittery from the fairly high dosage but wow, i can actually think straight for once! Supposedly being delivered home oxygen sometime this week after nearly 2 years of run-around by the NHS. Reading up on the psilocybin next!
  2. Oli

    Newbie help UK

    Hi Maria and partner, im also from the UK, and thought i'd add my experience and send my well wishes. Im currently out of cycle, but found great relief in this forum a few months ago. There is a lot of information in this thread and i haven't read every word so forgive me if i repeat things already mentioned. The biggest relief for me was a combination of daily supplements of taurine and magnesium, the magnesium i took 1x 250mg in the morning and taurine 3x 500mg over the day. I had been given the run around on at-home oxygen previously but this year i went to my GP armed with a form and got a prescription for oxygen sent onto a delivery company within a day or two - i had to go through a locum and then chase the dr's secretary so she understood the requirements (this was a struggle but calm polite persistence got me there in the end) once the oxygen company gets the prescription they can deliver within 4hrs. make sure you get at least 5 tanks so you dont need to call them out for replacements each day. a usual delivery for them is next day, not same day - but they can do an emergency 4hr delivery if you run out, but can never exceed the prescribed amount. also ensure you get the correct face mask, the delivery company will be able to help on this. When i feel the slightest twinge of an attach i drank two cold cans of redbull and got on the oxygen, breathing deeply in through the nose and out through the mouth. doing this in a dark cool room with a comfy chair. time how long you are on the oxygen, when you feel full relief, note the time and start a countdown of the same time. If you find the oxygen becomes ineffective, check if the tank is nearing or less than 50% empty / full - some people are affected in this way, switch to a new tank and complete the time. I found that the oxygen delays the attacks, but relief could be for a day or a few hours. I used to get one horrific attack a day, on the oxygen i could have 8 or so, but was able to get the pain down usually within 10 minutes so i could function. im very lucky my attacks only last a month. i looked into the mushrooms and did one treatment with some liquid mushrooms, but later found out the dose was lower than labelled. this dose caused one of the worst headaches the next day - which the oxygen did little to stop. i have since done the regime with dried mushrooms through tea. i am hoping this will mean i dont get my attack month back for longer than the usual 2 or 3 years. I hope some or any of this may be of use to you, and you find relief in some form. Also, it can be really useful to log your attacks, i found after logging everything i could that i was actually under reporting to my GP. I log pain level, oxygen on / off, and a few other symptoms and it was extremely useful to let my GP see it all first hand. One last thing, as it almost the holidays. Certain perfumes can REALLY set me (and maybe you?) off, beware of relatives with liberal perfume, candles and other festive "treats". All the best, and good luck find your personal busting technique!
  3. Oli

    Is weed that bad for CH?

    I find higher indica % strains such as afghani are great after an attack, avoid citrus based strains as these seems to add to the intensity of a CH attack. This is just anecdotal from the past month - your mileage may vary.
  4. Re the Marijuana, during my last cycle (3-4 years ago) the common discussion was that "weed was a trigger" the conversation wasn't very nuanced and i suspect had more emotion than scientific backing - there were some people claiming it was helping them hugely. No one could talk about specific strains or indica vs sativa with any confidence. I have now read that some strains are indeed triggers, but also that some a huge help in busting shadows or just keeping the peak pain level down. Much of what i've read in anecdotal, but last week i experienced it first hand. Like you've i've smoke 15 years +, but this year i have switched how i obtain it and now know with much more certainty what i'm smoking. I had an 80% indica strain supposedly high in cbd, afghanii believe - and it was like someone had just popped the roof of my skull and let all pressure out. It was almost as effective as oxygen. What i have currently, a hybrid amnesia haze, if i have more than 2 or 3 joints before bed, i'll be up with a CH attack within 2 hours. I don't have any left to re-try the indica theory though - so not remotely scientific, but more anecdotal evidence. Your mileage may vary.
  5. Oli

    Taurine! WOW!

    Yep - rings very true here as well. It actually gave me comfort reading that, the previous thing i had read was "oxygen can suddenly stop working" and i thought, oh - already ?!?!? Thanks for the info on the app, i'll be sure to seek it out. Grand, i've just found the other sections of this board (i found this site during an attack and hadn't ventured outside of this sub-forum yet, brain half forget there was more to explore)
  6. Depending what country you are from the answer varies substantially. In the UK you would have to resort to "dark-net marketplaces" which i presume moderators would prefer i didn't expand on in public, as mushrooms were made illegal here back in 2005. In holland, just pop to your local smart-shop. There are routes however, a friend has been prescribed both MDMA and Psilocybin by a psychiatrist for micro-dosing to help in depression (mdma) and migraine (Psilocybin) - all supposedly legally - no idea how though.
  7. Oli

    recommended doctor list

    Would love to put together and send over some UK relevant information for you - would it be welcome, or is this site primarily for US / Canadians audiences? The NHS has finally added cluster headache to the at home oxygen list so all UK GP's should be able to prescribe easily, some are just completely unaware however. https://www.networks.nhs.uk/nhs-networks/london-lungs/documents/oxygen-treatment-for-cluster-headache-adults-for-patients https://www.uhb.nhs.uk/Downloads/pdf/PiOxygenTherapyClusterHeadaches.pdf Above documents may be helpful if you have been turned away or denied at a UK GP Surgery. The Oxygen company AirLiquide - which handles the South East of the UK (London) have been very helpful, and the delivery guys are well versed in cluster-headache, providing what seems to be the mask and regulator that OUCH (cluster headache charity UK) say is the best option. BOC Gas (handles part of the north) were also very helpful and knowledgeable on the phone, even offering to just sell me a canister and rental options if the NHS took much longer to get things sorted! There is hope out there, now
  8. Oli

    Taurine! WOW!

    It was a H10H tank - around 2000 litres i believe, i now have another type but same capacity, just shorter and fatter. I used the first one to cure i think 4 or 5 headaches. The first was cleared in 10 minutes, the second 14, the third 15, and the last one took 40 minutes and then i had none left for the mop up - but i seem to have got away with it Managed to get a new tank delivered on a 4hr delivery (thank god, was panic'd i'd have nothing for overnight) and trying to get my GP to up the prescription to 4 or 5 tanks so i can through a weekend and onto Tuesday - they try to only do next day delivery so if i run out over the weekend i won't see a new tank til tuesday normally. Think that'll go through tomorrow and that should sort me for the weekend. "Wired" doesn't appear to be available in the UK, so i've gone for the 5hr energy thing - but so far ive not used caffeine as well as the oxygen - im not sleeping much as it is so if i can avoid the caffeine i will. Done a load of reading on psilocybin and it seems to offer a way to break the cycle, rather than just a headache. Ordered some up, due to arrive in 3-5 days, will report back on that - is anyone here using psilocybin ? When asking about micro-dosing, a friend told me "I would start with anything that affects glutamate v GABA balance. Magnesium is big, so too is progesterone v oestrogen balance, plus inflammation. Any inflammation will drive up glutamate, and most comes from symbiosis of the gut, issues with oxalates/lectins in the diet or mould exposure..." Still looking into what a lot of that means, but does it chime with anyone here? Also, Is anyone using an App or other tech to track their headaches and the treatment? I'm quite techy and have built a basic system, interested if others use anything, or if there is interest in a new solution.
  9. Oli

    Taurine! WOW!

    Really useful info, thanks Jon. I'll be sure to seek out "Wired" - im on 2000mg of taurine through supplements, and i feel like they might be helping lower the peak level of pain, so im going to continue on those. doctor didn't comment either way on the levels of various things im taking but 111 was quite alarmed at the magnesium (lowest dose of anything im taking) so looking into that a bit more. Only oddity so far is about half an hour after the oxygen the hunger hit big time - i usually have a small appetite but it reduced even further over the last 10 days, feel like something has been lifted - trying to stay keto however. Roll on the end of the cycle! FunTimes - yeah i think its an E Size, they said i'd get 2hrs ish off it, and that i can get next day delivery on another tank - they were also confused as to why only delivering one. I'll see how helpful they are when i re-order in a day or so. The relief that the oxygen has worked this well is huge - its been such a journey to get here i almost had it in part of my brain under things that wouldn't ever happen, or wouldn't work.
  10. Oli

    Taurine! WOW!

    Red Bull 250ml = 80mg of Caffeine so im currently racking up less than i thought but in the low thousands of mg. Oxygen turned up today - give only one bottle, and appears i used 1/4 of the tank to extinguish one headache - it does seem to work well though! I'll be asking for a larger cylinder, and two of them - when this one runs out which i guess will be a couple of days. I am looking forward to a proper nights sleep tonight, the first in a week and a half. Fingers crossed!
  11. Oli

    Taurine! WOW!

    Bit more info, in case it's useful to others finding this page. I used to take verapamil, but didn't start on that this cycle, was prescribed the usual SumaTriptan nasal sprays, which are hopeless. Over the weekend when i first read about taurine on here i used 2x regular sized red bull cans to abort an attack and was very happy til sunday. I got the start of another headache and took 2x cans and it dulled things down to around a 2 on the pain scale, manageable but annoying. I had another can in the fridge but wanted to keep it in case one hit during the night. I was okay through the night - first nights sleep in a while. This morning i got magnesium & taurine supplements - 500mg each. Through today i've taken 3x Taurine tablets 1500mg total, 1x 500mg magnesium and got through a large can of monster energy drink, and one can of red bull just now, as i felt the tweaking coming on as i cooked dinner. I'm slightly worried that the pain comes back as soon as the drugs wear off, but this could just be my anxieties of getting a full-on attack. 9 days into my cycle which usually lasts 1 month. Also a bit worried about the total dosage of taurine / caffeine im taking as i have no idea whats actually in red bull - they list it in percentage (0.4%) but i wouldn't be surprised if im taking nearly 4-5000mg of taurine. Seeing the doctor tomorrow to chase the oxygen and check on my self medication routine.
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