basoon

Thank you very much Lieutenant for your work on this and Par for reporting back on your experiences, has been v helpful. I'm sorry to hear you having a tough time at the minute, hope things improve for you soon Lieutenant, I had a question about the effects of 5meo-dalt. I really like the the idea of being able to measure accurately how much I'm consuming each dose. Know it's a difficult question to answer, as sure it varies a lot, but what I'm wondering about is how much of a trip is likely from a 20mg dose and how long it lasts? When i busted with shrooms I really really struggled with the psychological effects of the trip. I moved to RC seeds and find them much easier to tolerate but have still ended up tripping out a bit too much using them (at fairly high doses) a couple of times. I'm guessing that this being the case means 5meo-dalt might not be suitable for me?

Here's a link to that double blind trial I mentioned on the efficacy of oxygen: http://jama.ama-assn.org/content/302/22/2451.full.pdf+html Might be a better thing to show your doc then the link I posted earlier as it's specifically about oxygen and it's taken from a respected, peer reviewed journal. It concludes that oxygen aborted attacks within 15 minutes for 78% of the trialists. If they agree to authorise it then here's a part completed oxygen order form: http://www.ouchuk.org/html/news/HOOF-new-part-complete-amended.pdf

Yeah oxygen works amazingly well for me. Apart from the middle of the night attacks if I can get on oxygen during the day right at the first tingle of an attack, it'll generally stop it from coming on totally. It's not as effective for everyone but it has proven efficacy. Goadsby carried out a double blind controlled study and though I can't remember the exact results it was something like 70-80% successful in aborting attacks within 15 minutes. It generally works quicker than that for me. Also, unlike other treatments there are basically no side effects and no health risks from long term use.

Also, regarding melatonin different brands seem to work better for different people. Biotech seems to be amongst the best though. You can actually get your GP to prescribe them for you or you can buy them online.

Hi Hajada, I'm based in the UK too and have pretty similar story to yourself. Have had them for 14 years, Starting when I was 18, wrongly diagnosed til I was 25 and each episode I've had has got progressively worse. I ended up looking on here when I started having problems with some of the more conventional treatments but as mentioned above it's still worth signing up with OuchUK. You can get a lot of support from them in regards to NHS regulations and treatments etc. You really should persist with trying to get oxygen. Change your GP if need be. You need to have one who can give you support. Oxygen is listed as a first line abortive for CH in the NHS and is considerably cheaper than daily Imigrane (sumatriptan) injections. You can print this out and show it to your GP http://www.ouchuk.org/html/news/Precriber.pdf It's written by the UK's two leading experts on CH and conveys the seriousness of the condition, listing oxygen as the best abortive. Also, as Bajeeber mentioned, you can actually ask to be treated by any hospital in the UK. You can request to go on the waiting list to be treated at Queen Square Neuro hospital in London. It's very well run and you'd never be restricted to just one appointment per year if you needed more.

Hi Renee, I genuinely can't imagine hearing of a single method of aborting (or reducing pain of) an attack that any ch sufferer would consider strange. Seems appalling (though not surprising) that your doc has never provided you with oxygen as it's down as one of the first line abortive treatments in the UK (you can print this out and show it to your doctor http://www.ouchuk.org/html/new/Precriber.pdf). OUCHUK also have a completed oxygen request form (http://www.ouchuk.org/html/media_downloads.asp - it's the 4th pdf down) which you can take to your GP and get them to sign off and fax to your local oxygen provider. The fact you live on your own shouldn't be a problem, I was living on my own when I was first prescribed it. In the the NHS you can also ask to be treated by any hospital and I'd suggest you ask to be referred to Dr Matharu's clinic at the National Neurological hospital in Queen Square London. I know it's a fair distance away from Bury but people come from all over the country and you'll be well looked after. He can also put pressure on your GP to provide you with proper treatment and get regular Ocipital Nerve Block injections which have worked well for many (including me) and you could be put forward for DHE if other methods aren't successful. It took me 7 years and various rubbish GPs to get my diagnosis of CH but I've been lucky to be at Queen Square since then. Finally, Check your pm's.

Edit - Just saw your other posts that you're taking it for other medical conditions. Is great that you're feeling better from those other conditions and truly hope you continue to feel healthy! If you look at the general research on MMS and the bad science it's predicated upon though it seems much more probable that that any recent improvements have been due to other factors. I'm also based in the UK, by the way. They've changed the NHS guidelines now so you can request to be treated by any doctor. If you unhappy with your doctor I'd def recommend that you ask to be referred to Dr Matharu's clinic at the National Hospital for Neurology (London). Think there's a waiting list of a few months but his clinic's excellent and once you're referred there he runs a weekly headache clinic that you can normally get an appointment to with just a couple of days notice. There's no one based in the UK (now that Goadsby's left) with a better knowledge of the various CH treatments and they carry out Ocipital Nerve Block injections which you can have every three months and I've found very very helpful for totally stopping episodes.

Hi Bushman, I know you only mention MMS as you feel you've had good results with it but I would strongly suggest that any improvement you've had with your headaches have been to do with the irregular nature of our condition and just a coincidental return to the mean. miraclemineralsupplement has been thoroughly debunked by various sources and their lucrative affiliate scheme encourages many unscrupulous sites to promote the drug knowing that they'll receive 50% of any sale. 50% profit to an affiliate also gives an indication of the massive mark up they place on the drug. There's only some scant anecdotal evidence for efficiency (and you can find the same online for just about any disproven treatment) and certainly no evidence at all to match up to jim Humble (the founder of MMS) grand claims of curing over 100,000 people of maleria etc. Their claims that there's a 'big pharma' conspiracy against them (an idea often put forward by advocates of different types of pseudoscience) is simply not true and in this instance large parts of the Alternative Medicine community have been as equally damning of the treatment. In various countries they've been made to withdraw all of the drug's advertised claims. This treatment can make you quite sick and it WON'T help with the headaches. Here are a couple of very interesting links to read more about it https://sites.google.com/site/mmsdebunked/ http://www.guardian.co.uk/science/2010/sep/15/miracle-mineral-solutions-mms-bleach (15 year old Crones sufferer challenges MMS) I'd say as a general rule of thumb, real cynicism has to be applied to any product which make unsubstantiated claims full stop, but particularly to those which claim to be able to help numerous unrelated types of illness/diseases. No drugs have as many medical applications as MMS claims. It claims to cure virtually anything including cancer, malaria and AIDS which is pretty horrific exploitation. Even the name is a red flag. No serious medical treatment will have the word 'miracle' in it. It's pure horrible, cynical, marketing nonsense. I know your intentions were good but as vulnerable group of people looking for any solution to our condition we're open to being exploited so it's v important we maintain skepticism about any potential treatments.

Hi there, Thought I'd say Hi as I've been lurking for the last few months... I've been CH sufferer since 1999. Was episodic for a few years and bouts were fairly predictable but they've lengthened so much in recent years I'm not sure if I'm chronic now or not. Hadn't really considered shrooms etc. til recently as I'd been on verapamil which had been largely effective. Over time though I was having to increase my dose until earlier this year it caused me to suffer a complete heart block when on a train... A pretty scary experience where I actually thought I was going to die. Spent a few days in hospital but obviously had to totally come off the verap after that. Tried Topamax which turned me into a dribbling idiot, Quite enjoyable for a brief moment to be honest! Have been sober for so long it was a some what novel experience feeling spaced and having a high foolish factor in my brain. Was like reliving being 18 again.Wasn't nice to permanently be like that though as couldn't function or work so came off it. Am now on Pregabaline which is hopefully working though don't know if it coinicided with a period of remission and we're now heading into the time of year when my headaches get most intense and I'm getting v heavy shadowing. Seems like busting could be the best solution for me longer term. Anyway, always good to read some pretty inspiring stories and see how well supported people are on here. You can get a sense of perspective and realise you've had if far easier than many. Tomorrow I fly from London to Chicago for the conference so I really look forward to meeting some of you then. Zak.

Hi all, Just thought I'd say a quick hello and introduce myself. Am heading over from London with my girlfriend Louise. Been a ch sufferer for 11 years but they've got increasingly difficult to control over the last year. Feeling pretty upbeat about things now but am looking to try to find a new way of dealing with them and getting a bit more freedom back... Looking forward to meeting you all later this week. Zak.