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Sog

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Everything posted by Sog

  1. same here re attacks after missing a dose, my Dr told me if I forget/miss a dose, to take it between the next 2 doses. It certainly lessens the shadows/attacks that followed for me. I'd get around 5 days of attacks if I missed one dose but if I took it between doses it would be 2 days tops. oddly, the same thing happened when I changed brands, same dose, same name, different brand name... 5+ days of attacks, it took me ages to figure that one out! (I'm on 420mg SR/MR once a day, SR/MR in UK = slow or modified release)
  2. Hi @Bushcraft39, Your introduction to CH was the same as mine, Id get these intense headaches, regular as clockwork, 3 times a day. I thought it was my back problem (lower back injury) that had spread up and trapped a nerve or something. Dr's were no help (at the time) so I'd go and see an osteopath 3 times a week, (at a cost of £105 a week!) and it would eventually stop. Sadly it would come back many months later and I'd repeat my trips to the osteopath. then after a few years of this cycle they didnt stop. I like many others decided there was only one option. I decided to leave this life. I was lucky, a good friend of mine was worried as I had not turned up to work and broke into my house and found me. I woke in intensive care after 6 days of coma and a month later I was out. I signed up with a new Dr who thankfully knew about CH. She tried me on various treatments until we found one that worked. Daily verapamil to prevent the attacks and sumatriptan to abort the odd one that slipped through worked for me. I could function again! over the years since, Ive worked out what to avoid to prevent triggering an attack. For me its avoiding rapid temperature changes, Alcohol, grapefruit in any quantity (it prevents many drugs working) and other things but as Ive found on here different things work for different people. I guess what Im trying to say is keep going. I know it seems theres no hope at times but there is. if you can find a Dr that knows about CH great, if not find one that will look into it and try the various treatments. theres usually a drug out there that will work. Im new to this site and will be trying the natural alternatives like MM etc but for the last 20 odd years these meds have given me my life back. I function normally, had a successful carreer (until covid, not much call for a sound engineer during lockdown) and I havent grown boobs! (listed rare side effect of verapamil) I truly hope you find the preventative that works for you. keep up with your notes on attacks and timings but dont wait a month. go and find a Dr that knows or doesnt mind being asked to look into CH asap. I wish you well and hope you find a way to beat the beast very soon. you will get through this and have a life again.
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