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Title: Hi to all Post by franco1979 on May 1st, 2007, 12:04pm Hi all What a great site, my eyes have been opened. Im frank from Basingstoke England and have just started a new cycle just last week, its going to be a long hard summer any help would be more than welcome. |
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Title: Re: Hi to all Post by BB on May 1st, 2007, 12:12pm Hi Frank Welcome to the Board and I hope your cycle ends soon. Would you like to share your story with us? Are you on any meds? Do you use oxygen? Painfree wishes to you. Annette |
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Title: Re: Hi to all Post by Bob_Johnson on May 1st, 2007, 12:20pm Hit the OUCH button (left) and find your local group. |
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Title: Re: Hi to all Post by Jackie on May 1st, 2007, 12:29pm Hi again, Frank.... :) Glad you decided to introduce yourself. Need help or have questions....just fire away. Be well.... Jackie |
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Title: Re: Hi to all Post by Guiseppi on May 1st, 2007, 1:32pm Welcome to the nut house Frank. There is about a million years worth of wisdom on this board. When you get a chance, tell us what your curent regimen is, what you use for a prevent and an abort. What has and hasn't worked. Maybe someone will have suggestions that can help you out. We can't always make them go away but we can show you hot to kick the beasts butt! Guiseppi |
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Title: Re: Hi to all Post by Rosybabe on May 1st, 2007, 1:49pm HI Frank! Welcome aboard!! Hope your cycle last very little and you do not get big hits!! [smiley=wave.gif] |
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Title: Re: Hi to all Post by LeLimey on May 1st, 2007, 4:43pm Hi Frank I'm in Notts and its nice to meet you! What meds are you on for your CH and have you tried O2? There is loads of help we can give you but we need to have a little more info from you so we don't tell you about stuff you've already tried! We'll help get you through this Helen |
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Title: Re: Hi to all Post by franco1979 on May 2nd, 2007, 5:29am WOW, Thanks to, BB, Jackie, Guiseppi, Rosybabe, LeLimey, its nice to no that people out their care, no one really gets what im going through here. So 5 years ago i started my 1st cycle and i can safely say i wanted to die, my docter put me on Pizotifen & liquid Codein which was zonking me out, it didnt seem to work and haveing no info like this i just went along with the pain, i was getting 3 ch a day for about 3 months it was pure hell for me and one day they just stopped, i thought that was the end of it untill 2-3 weeks ago, ive been getting 2 bad hits around the same time every night, i feel dead on my feet. After the 1st two nights i went to the doc and he has put me on 1.5mil of Pizotifen a day but they dont seem to be doing any thing, when i mentioned oxygen he told me it only works for a very small amount of people?. Can i go to the doc and tell him what i want? or will he just try differant drugs on me until one works? Lots Of Thanks Frank |
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Title: Re: Hi to all Post by George_J on May 2nd, 2007, 9:27am on 05/02/07 at 05:29:48, franco1979 wrote:
We do. Welcome home. on 05/02/07 at 05:29:48, franco1979 wrote:
Where do doctors get this stuff about oxygen? He is misinformed. And as for liquid codeine--been there, done that, doesn't work. A pretty fair number of us will tell you the same thing. Haven't tried Pizotifen. I don't know much about it, other than it's a serotonin antagonist that works on the 5HT-1 and 5HT-2A receptor sites and that it is used to treat migraines. So it's best I say nothing about it. I'm sure Helen (LeLimey) will have lots more to say on the subject of your doctor. I feel somewhat sorry for him already. ;) Again, welcome and best wishes, George |
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Title: Re: Hi to all Post by ClusterChuck on May 2nd, 2007, 9:40am on 05/02/07 at 05:29:48, franco1979 wrote:
This boy needs to do some serious reading! He is WAY off the mark with that comment! If I recall correctly, it is the NUMBER ONE abortive out there! He is contradicting YEARS of research, and HUNDREDS of reports on the value of oxygen therapy for cluster headaches. Try to talk nice and polite to him. Try to work with him to get the results you need. If all else fails, use a two foot long lead pipe up the side of his head. JUST to get his attention, mind you. Chuck |
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Title: Re: Hi to all Post by franco1979 on May 2nd, 2007, 9:47am Thanks George, i think i need to make another apointment with the doc tell him to look at this site, might open his eyes a little. Does the o2 come in big canisters and how do you take it? All The Best Frank |
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Title: Re: Hi to all Post by Guiseppi on May 2nd, 2007, 10:42am The tanks come in many sizes. I use E-tanks because they're fairly light and portable. The critical points to oxygen: Requires a high flow rate, with a regulator that will handle up to 15 LPM. (I don't know why but docs HATE that part) Must use a non re breather or "cluster" mask. Something that gives you only oxygen and doesn't mix outside air, you need the 100% oxygen. Be pushy, I once sat in a neuro office at Kaiser and told them I wasn't leaving until I spoke with someone besides nurse Fu^%ing Cratchett and got an 02 refill!!! It works like magic for me, hope it works as well for you. Guiseppi |
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Title: Re: Hi to all Post by franco1979 on May 2nd, 2007, 10:59am ill book that apointment Thanks Guiseppi Frank |
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Title: Re: Hi to all Post by LeLimey on May 2nd, 2007, 5:02pm Hi Frank, as a long time O2 user and devoted disciple if there is anything I can do to help please shout! Oxygen is ALOT cheaper than the imigran injections to which you could currently be using 2 per day (at a cost of £56 per day to your surgery) O2 is centrally funded so doesn't come directly out of your surgeries budget which might influence your doctor allowing you to try it! Money talks when all else fails! IF he doesn't let you have it demand a referral to a HEADACHE SPECIALIST neuro - I can't emphasise the HA Specialist bit enough. If there isn't one in your locality he will have to refer you out of area which will cost even more but thats just tough isn't it?! I'll do all I can to help get you the treatments that will help you so keep us updated and we'll keep you battling! Helen |
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Title: Re: Hi to all Post by franco1979 on May 3rd, 2007, 4:41am Thanks LeLimey I slept all night last night? 1st time in almost 3 weeks, all im getting is shadows though the day, fingers crossed for tonight, im hopeing that this is the end for another 5 years but im not going to get my hopes up. All The Best Frank |
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