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Cluster Headache Help and Support >> Getting to Know Ya >> New on here, 1st ever post, live in Preston uk http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1329811210 Message started by DaveE on Feb 21st, 2012 at 3:00am |
Title: New on here, 1st ever post, live in Preston uk Post by DaveE on Feb 21st, 2012 at 3:00am
Hi to all
I'm new on here and am a lil unsure what to write so i'll just put a few things about myself so here goes. My name is Dave, i'm 34yrs young, live in Preston, UK, I have suffered from cluster headaches for a long time now, since i was about 18yrs , sadly tho i thought it was just me for many yrs so suffered on my own til about 5yrs ago when i decided to go the docs which is when i was refered to a specialist who confirmed that i suffer from c/h's. I was given verapermil tablets to take, which don't always do the job tbh, just last night i had a serious attack which completely wiped me out and i remember thinking at some point that i can't go on like this anymore, they are really getting me down lately so here i am to hopefully speak to people who are in the same boat as me and to see how other people deal with it, i'm hoping my first post is ok for all you guys and look forward to reading your replys. Many Thanks >> Dave |
Title: Re: New on here, 1st ever post, live in Preston uk Post by Kevin_M on Feb 21st, 2012 at 7:36am
I agree with Mike here that verapamil is an effective preventative, but not foolproof enough to ride the temperment of cycles. Sometimes an extra amount can be added for harder times and better prevention, then tapered down when a cycle's appetite is still antagonizing but cageable. Altering dosage needs to be done gradually and with a doc's consent.
How much verapamil are you taking per day now? Doing without abortive measures though is like not having a net, which should be required. Mike's spread of abortives mentioned is what's needed. Also though for bearing without, an icepack on the pain source may assist in enduring, but do what you can with an energy drink and request oxygen. Welcome |
Title: Re: New on here, 1st ever post, live in Preston uk Post by Jacey on Mar 6th, 2012 at 4:12pm
Hi! I'm also from the UK and although I've only had clusters for 2 years have found this site amazing. The amount of really useful info and experience is great. It's also making me realise how lucky I am. I live in north Yorkshire (the rural part) so to get diagnosed after so quick by my local doc is pretty good going. The best thing about the site is you are not alone! I've just started on prednisolone today 12 x 5mg for 14 days and have had a pain free day! Am also on verapamil but breakthroughs have been fairly serious even on 480mg so by my reckoning by the time my pred tapers off I should be nearing the end of my cluster period anyway. I really feel for anyone who has suffered as long as you without a diagnosis. Keep in touch and check out all the great info on here. :) :)
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Title: Re: New on here, 1st ever post, live in Preston uk Post by Andy T on Mar 8th, 2012 at 8:30am
Hiya Dave
Having suffered for some fifteen years now, I can totally appreciate your situation. Before christmas 2010, I started the mother of all episodes, to be honest I was suicidal, averaging 7 or 8 attacks every day, for aound three months, with only two injections a day to go at. Constant background headaches in between. Went on for over 3 months. When I found these guys, they gave me some red hot advice, the very best of which was to get on the O2. My consultant was Al Din at pinderfields, wakefield, and he listened and read the sheets I printed off. Bottom line was I got the O2, it was a godsend at my last episode and the doc has now backed that up with an extended drug regime for my next episode. I don't have the details to hand, as I'm at work, but Al Din has certainly taken it very seriously and seems to really know his stuff. Bottom line, start by getting that O2, no matter how much you have to argue for it. If your neuro isn't proving to be up to the mark, ask for a referal to Al Din, he's only over the hill. I'm sure you'll be welcomed, as a visitor, to gods own country! As long as you go back to the heathen land afterwards!! lol. All the very best, be PF Andrew |
Title: Re: New on here, 1st ever post, live in Preston uk Post by ConalHendry on Mar 14th, 2012 at 3:55pm
hi dave, im also in the uk and have suffered for about 7 years now with cluster headaches, i found verapamil made me feel very sick and didnt helpp my headaches at all, neither did sumitriptan or oxygen.... ive been reading about deep brain stimulation.... looks very promising!
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Title: Re: New on here, 1st ever post, live in Preston uk Post by wimsey1 on Mar 15th, 2012 at 8:10am Quote:
Again, tell us more. What dosage levels were you on? Was the sumatriptan pill form (ineffective) or injectable? Was the O2 low flow, rebreather mask (ineffective) or high flow (25lpm+) with a nonrebreather? It's just that too many tell us of their failed attempts only to discover the dose was not high enough to be effective in dealing with CHs. It would be unusual, for example, to find someone for whom the injectable form of a triptan didn't at least abort the current attack. Blessings. lance |
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