Hi to all the CH familly

I'm not a newbie on this message board but it's been a while since I came back to Clusterville...

First let me introduce myself, my name is Stef and I'm from Quebec. I've been diagnosed with ECH 6 years ago, I had 2 cycles a year, in Spring and Fall that lasted for about 2-3 months each with 2-3 hits a day...It improved a little bit the last 3 years with only 1 cycle a year in Fall starting in August for a period of 2-3 months that usually stopped by Halloween or Christmas... Since Christmas 2007, nothing... No hits, no symptoms, pain free all the time! Was IT gone?

WE, humans tend to forget... Forget the fear of an attack coming, forget the way I feel after a scale 10 hit and most importantly, forget the PAIN that comes with the attack... But I never forgot the people that helped my during all those years, my CH familly...

So, yes I'm back dancing with the beast twice a day for the last week, with hits that goes from 8-10 on the scale scheduled every 12 hours at exactly 9 in the morning and 9 at night.

By chance the last 3 years I had use Zomig 5 mg nasal spray to abort the hits and it still works on every attacks I got so far... Suffering like hell for 15 to 30 minutes for the time the product is doing the work is nothing compare to the 3-4 hours hits I used to get before I got this medecine.

I'm glad to be back here, but not to fight the BEAST again!!!

Stef

Welcome back.

God, 3-4 hours thats brutial!! my ch  last from 50 to 65 minutes and i thought that was long. get some 02 and knock them down to 5minutes.

                                        Coach Bill

Hi stef..
  I also use zomig, and my insurance won't pay for only 6 per month... so what I do,    I pay 190 dollars, and get more. :(...then I spray it into the corner of a baggie, and with the head of a pin, I get about half of it out, and put it under my toungue.   For most hits, it works just fine, and I save the rest for the next one.
   Can't believe it cost that much for a couple drops >:(   BUT it does work good when the O2 is not right at your side.
   welcome back             lorac

lorac wrote on Oct 31^st, 2009 at 7:27pm:

Hi stef..   I also use zomig, and my insurance won't pay for only 6 per month... so what I do,    I pay 190 dollars, and get more. :(...then I spray it into the corner of a baggie, and with the head of a pin, I get about half of it out, and put it under my toungue.   For most hits, it works just fine, and I save the rest for the next one.    Can't believe it cost that much for a couple drops >:(   BUT it does work good when the O2 is not right at your side.    welcome back             lorac

NEVER even thought of that...thank you....this is exactly why I'm here....besides the friendship.

Best,

Jon

A little update on my situation...

It's almost funny to see how my cycle seems all messed up! ;) Yesterday morning at 8 I got a hit that was shutdown very fast with my nasal spray but I did not get the usual nightime hits, just some little attacks that did not need the meds at all but just enough to be bothering...

I wake up this morning and what a surprise not hit but it seems the little devil change his mind and is now attacking the other side of my head, started on the left side at first and now I can feel it on the right side... Up to now no big attacks but a constant pain, not enough to abort it with a spray but just enough to remind me it's there...

I don't know what the rest of my cycle will be but it's completly different than the last one! I hope that this changes will affect the lenght of it for the better!

Thanks to all of you for the support!

Stef   

You don't mention any preventative meds...a med you take daily while in cycle to reduce the frequency and intensity of your hits. Verapamil, Lithium and Topomax are all popular prevents. Might lessen how often you're using up the Zomig.

Also, do look into oxygen. I can abort in 6-8 minutes using 02, completely changed my outlook on the beast!

Guiseppi

Me too... being back after 3-4 years CH free. Luckily I have my O2 nearby quickly. Though I have attacks kip 7 and up, my O2 aborts them within 7 minutes.

I see a lot of people fighting with their insurance etc., for me in Belgium it's much easier. I go to the pharmacy and have my tank within 4 hours, prescription can be brought in later when convenient for me.
Monthly cost is only rental cost 6 euro per month, no matter how many oxygen you use.

All of you should support Obama when he wants to have health care for everybody. And believe me... this is not socialism or communism. Just taking care of fellow citizens.

Wish you all painfull days and nights. ::)

My sister's doctor writes a letter to the insurance and explains she has clusters and needs more than allowed and it works.  She also keeps getting it after her clusters and stocks up for next time.

Often, at the beginning of a cycle, I notice an erratic pattern after I start meds.  It is making them mad!  When I used no meds, they were like clockwork.  Now, not as much.

Hope that helps,
Joni