had an almost pain free day except a small one on getting up then BANG woke up just after midnight with a real bang of a cluster, they just cannot stay away and any break they come back with a vengence.
was wondering for the few of us that are chronic how often do you get a pain free day for me its is rare. Some days very bad others not so bad but rarly pain free days.
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Submitted by Val on Mon, 08/25/2014 - 11:22
PermalinkDavid, that's really like
David, that's really like asking how long is a piece of string. Even among episodics I doubt they could say with any certainty how often they get a PF day. I am so sorry that you get so little PF time and maybe the new SPG procedure which we'll hear about at London will offer you some hope. Before I had my ONS I had regular admissions to QS for DHE [di-hydro ergotamine] infusions and the prof used to give me an extra two doses because I tolerated it well (its highly toxic and is not done any more) and I found that because of the regularity of the treatment it seemed as if I built up a therapeutic level and sometimes between treatments I'd go a whole two weeks without an attack. BUT there was never any certainty to this, and the PF time could be as short as a day or two only. It did keep me going until I had ONS, thank God, because I don't even like to think about where I might have been without the DHE therapy, even the five days in hospital were bliss because I knew I wouldn't get an attack while I was on the treatment and that i would sleep well and wake without an attack battering the hell out of me.
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Submitted by MelodyT on Tue, 08/26/2014 - 20:42
PermalinkI have been chronic for
I have been chronic for nearly 3 years.... I did have a couple of months pain free after trying an 'alternative' option, but this has never worked again... So I'm back to daily attacks. I do though, every now and then, have 1 or 2 days that are pain free.... Of cause I love and celebrate these days..... But for the life of me, I have not discovered yet how or why it happens, I wish I could! The pain free days might occur once every 6 to 8 weeks, even the timing of them is random.
melody