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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Another dose of Predesilone Please...! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1238447201 Message started by Lefty on Mar 30th, 2009 at 5:06pm |
Title: Another dose of Predesilone Please...! Post by Lefty on Mar 30th, 2009 at 5:06pm
I have been suffering from CH's for almost 20 years now. I'm
episodic usually every two or three years. When i was free and single I travelled a lot therefore it was very hard to get a diagnosis.I endured years and years of getting useless pain killers from doctors who insisted i had migraines and who really didn't have a clue. Finally after finding this site i was able to self diagnose and after reading the testimonials i had finally found some answers and to be brutally honest I cried like a baby because i wasn't alone any more. I i could finally approach the doctors with a greater confidence and get some help. 3 years ago during the end of my cycle i finally went private to see a neuro because the waiting list on the NHS was close to a year. Hey presto i finally had a prescription to fight back against the beast. I was prescribed Predesilone at 60mg for a week reducing by two tablets every 4 days and then stop and also imigran injections. So it is during my present cycle that I finally got an opportunity to use these meds.The steroids lasted about 3 weeks in which time i had very minor shadows but as the dose decreased the CH's intensified. . I then had to move on to my imigran, I remember my first injection i thought 'Sweet Jesus' this is right up their with sex. It stopped the faker right in its tracks. After 20 years of going full blown into attacks i had something that finally worked. It didn't last long though, the rebound headaches the increase in attacks the increase in severity. My new doctor has been an absolute star we discussed oxygen therapy and without hesitation he gave me a repeat prescription until my cycle ends. During this time i have sucked up a lot of 100% pure oxygen I'm surprised the NHS has not gone bankrupt. We are very lucky here in N.Ireland as we get free prescriptions for all on the NHS. The one thing my doctor point blank refused to give me was a repeat prescription for my presdesilone. He cited all sorts of complications and side effects. I have read a lot of posts over the last number of weeks and you people fairly know your shit...! I'm new to all these medications for CH's and basically what I'm trying to ascertain is this. If I'm only taking predesilone at those levels every couple of years could it do damage or do you think its manageable. My cycles last on average six to 7 weeks every couple of years. The predesilone really works for me and it would save me a lot of pain injections and 02. SORRY FOR THE LONG POST TONY |
Title: Re: Another dose of Predesilone Please...! Post by Guiseppi on Mar 31st, 2009 at 11:27am
7 weeks would be a long time for the steroid treatment. I go 10-14 days on steroids each cycle while I wait fo the lithium to kick in. Have you tried any of the other preventative options? Verapamil, lithium topomax?
Steroids have the same effect on me. While on them I get a complete break from CH. If I go off the steroid without any other prevent in my system, the CH comes back at me with a vengeance! Glad to hear the 02's doing the trick for you. Joe |
Title: Re: Another dose of Predesilone Please...! Post by Guiseppi on Mar 31st, 2009 at 11:35am
I almost hesitated to reply..(and should have!!!)..when I saw Bob replying! He's given you the info you need to take to your doc on the prevents! ;)
Joe |
Title: Re: Another dose of Predesilone Please...! Post by Lefty on Mar 31st, 2009 at 5:04pm
As i mentioned my new "Just fresh out of school Doc" has been absolutely brilliant in helping me deal with my CH's. He really shows an interest and is willing to learn himself. I have an appointment with him next week in which i will definitely take the information you provided on preventive therapy.
Cheers Bob & Joe Lefty...! |
Title: Re: Another dose of Predesilone Please...! Post by Bob_Johnson on Apr 2nd, 2009 at 8:21am
A lesson here for all: newly minted docs tend to have the latest medical data in their heads and, while lacking the blessings of long experience, often compensate with willingness to learn.
Sadly, older does not always translate into better. Too easy to get into out of date habits of practice. Obviously, no absolutes in my comments but does encourage us to seek an open mind,willing to accept information FROM us. |
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