Hi all!

I found Markus' entry on the guest book and suggested he introduce himself here and become a part of our family.  He did so, but within another thread.  I didn't think many would notice it there and respond directly to him, so I took the liberty of copying his post and am reposting it here.  Please welcome him to the family.

Jerry  


Re: Glad you're here-sort of
Reply #7 - Oct 17th, 2008, 4:29am Alert Board Moderator about this Post! Quote
I was diagnosed with CH some two years ago, after thankfully only a short period of misdiagnosis of sinus and other usual suspects. My doctor quickly understood the typical symptoms and put me on Ergotamine + Caffeine tablets which of course only ever started to kick in when the attack was coming to an end. Typical attack patterns of 30-45 min, 3-4 times a day for 6 weeks. Just finishing off my third cycle after 8 weeks. Although my second hot period has lasted longer I have learned through trial and error that, since the timings of my attacks are relatively consistent, I can take one Zomig tablet approx. 1 hour prior to the assumed next attack and in this way completely forego it. Managing the timings has allowed me to go for days without an attack (providing I didnt miss a bit that is). What complicates the process for me is the fact that I travel approx. 15-20 days per month and more importantly that I travel around the world and therefore have to deal with multiple timezones and jetlag. Since the biological clock and hypothalamus are directly linked to CH and since flying is a definite trigger for an attack I am still getting caught out on the timings occasionally. Notwithstanding, I am certain that for people who do not travel frequently and who feel that their attacks have consistent patterns, taking a Zomig (Zolmitriptan) an hour prior to the next "show" could work equally well and get them through days without pain. In essence, I believe that a "take one every 8 hours" approach can possibly allow for weeks of no pain. I am combining this treatment with a low histamine diet during hot periods and not only stay away from the famously known triggers alcohol, chocolate, tomatoes and others, but try to stay away completely from preserved and processed foods as well as sugar in any form. Regrettably the list of dont's is rather long and therefore it is not always easy to get a well balanced intake throughout the hot period (with the positive side effect being loss of weight!). I add lots of water to my daily intake and am adding magnesium and minerals to my fluid intake. I have recently been to see a neurologist in Germany who specialises in CH and have been told that a new therapy has shown promising results. A cortisone-steroid treatment is administered for two weeks at the start of the new cycle (I understand that 2 weeks are a manageable and relatively risk free duration for a cortisone treatment) and that, simultaneously, Vermapil is prescribed as prophylaxis. During the cortisone treatment, attacks can and should be reduced to zero. Thereafter, the Vermapil, which will have been taken for two weeks by then will have reached it potency to sustain the pain free periods after the cortisone treatment ends. It sounds promising and I will try next time. I hope that any of the above may help at least one of you. And even if it helps to cancel out only one single attack, its probably been worth the while.


 Edited to include his full name.  JC

Welcome Markus,
  Nuthin worse than a CH on an airplane.
    I'm on the Prednisone (10 day burst) along with Verapamil.  It usually works pretty good for me.  Still getting nightime attacks but not so severe.  Around K7 or so for about 1/2 hr.
                       good luck to ya
                               JPC

Welcome, Markus.  Glad to have you onboard.

All the best,

George

Ya ,Houdy and welcome.
all the best
thebb

Hi Markus: I too have to deal with time zones and jet lag. I am a big fan on using 02 and have an account with prax air which have dealers in just about every major city. All I have to do is call them, tell them when I arrive, and presto, I will have a couple tanks waiting for me.I carry my own regulators and mask with me. Sometimes I may not need it but it makes me feel a lot better..your in the right place...

shark boy

Welcome to our world Marcus.


   Ask questions, read, accquaint yourself around here and most of all realize you are home and among friends now.


Linda