Hello everybody!

New guy here.

Been getting CH since my teen years, and am now 42. I used to get them every 2nd or 3rd year after cycle.

This time I went almost 8 years without a hit. I thought I was in the clear, and just before Christmas BAM!!!!!!! AAAAAGRRHHHHH!!!!!!
And this cycle is one of my worst, and most severe yet. At least 4-5 hits at night, and 3-4 hits daytime.

I have to say thank god for this sight, and all you beautiful people here. I read about the use of O2 here, because my hmo was done paying for the ralpax, and other drugs that somewhat worked, and $267 every three days has put me in the poor house, bye bye bank account!! All gone.

The good news is they will pay for as much O2 as I need. I have been going through 3-4 bottles a day/night. There the small 3' tall ones, but who cares they work from pretty decent to pain all gone sometimes.I also think I might be at the end of my cycle too, but we all know how that can go backwards pretty fast. Been out of work for five weeks now. Tried to deal with it for a couple of weeks during and after Christmas, but the cycle became too severe.

Anyways, Hello to everybody here, and thanks for all the info I have taken in so far.

Welcome to the board, glad you found 02! Hope you're right and the cycle is winding down for you. Do you have any decent preventative medications that are working for you? I take lithium at 1200 mg a day while on cycle, blocks 70-80% of my hits. Others have found success with verapamil. Might be worth talking to the docs about. Both lithium and verapamil are relatively inexpensive meds.

Glad you found us!

Joe

Thanks gusieppi

I talked to my new doc about them , but he wanted me to see the nero first. Last tues. The nero took me off topamax, and relpax. Said the topamax causes kidney stones. He put me on a Migranal taper, and two other meds, seroquel before bed, and propranolol in the morning, and I wanted to kill him at first, because after coming off of the other stuff I had two really really bad nights, but it seem's to be working now. Had a good pretty much PF day today. Only one attack so far.

hi die cluster and welcome

I recommend to take prednisolone 75mg per day and then reduce it , check it with your doctor of course.
cut alchole and cholclate.

regards
Farzad

Welcome to the family!  You'll get lots of good info here, plus lots of anecdotal evidence of what can work for some people...and of course, support!

Have you looked into the Family Medical Leave Act? It seems a lot of CHers have gotten help keeping their jobs with that.  Good luck to you!

Thanks for all the input everybody :)

Yes defeniatly staying away from chocolate for now, and acholol.

Welcome to the board, you will learn so much here. 8 years is a long remission, is there anything you can pinpoint that may have helped in skipping your cycle every 2-3 years??. There may be a anwser in there that may get ya back into remission. Well anyway, welcome to the wonderfull world of clusterheads.


                          Challening, More assertive.. Coach Bill  >:(

understand the frustration when they come back. i went for several years without a single sign, i was even okay to have a drink. then bamm, anyway, i am doing the verapamil and the o2, been pretty good for awhile. wish you the best. what level is your o2 set at?

It is always such a shock when they come back. You know they will and shouldn't be surprised, but I guess we live in the moment of being pain free when we can.  

Welcome and you've found quite a supportive group here.  It's good you have the 02 and it's so very helpful for a lot of people.  Verapamil, prednisone and imitrext seem to help a lot too, as do some herbal remedies inlcuding melatonin and kudzuu root (and taurine, etc.)... so see what works for you and hopefully you find a way to handle the cycles so you can enjoy time while in a cycle almost as much as when you're not in one.

Welcome to Clusterville.

O2 has been wonderful for me (after years and years of suffering). Used at a high flow rate (I use the demand valve) it has been able to stop my hits in only a few minutes without any other drugs. Be sure you've got the right mask (check on the meds board for proper use).

That's interesting about the topamax causing kidney stones. I've been on it for 10 years - so far so good... :) First I heard about kidney stones, but I'll watch for them. YUCK!

Again welcome to Clusterville. There's a wealth of knowledge here. Read read read.

Hugs BD

Welcome to your new home. Wow, eight years PF, sucks that the beast found your address again, but that is how it goes, no mercy.

Keep huffing the o2, it is my # one abortive and has worked every time for me so far. I take Verapamil for my preventive but there are other meds available. Be sure to talk to your doc about this, do not self medicate.

Again, welcome.

  Barry :)

Once again thanks everybody for the warm welcome.

I see the nero again on the 24th, and although they seem to be going into remission, I'm going to ask about the verapimil anyway.

It always seems they finialy help me with something towards the end of cycle when the kip factor is lower. Usualy by then anything will work. I just wish they would get on the case sooner when I'm having kip 8's 9's and 10's. Id love to be able to not suffer through those ones.

Of coarse now that I know about the o2. Maybe next time I won't suffer as much.
They brang me an o2 machine(pump) today to use instead of the tank's.  I heard the machine dosen't work as well, so I made sure they left me 4 tank's incase it don't work.
I think It might because my kip level is low now. I dought that it would work when at it's highest.

Thanks everybody for the support :)

The g-man

Most find the oxygen machines don't produce enough pure 02 to work as an abortive for CH. The idea with 02 therapy is to get pure 02 into the lungs, no outside air, no exhaled air, just pure, sweet 02! The machines normally can't accomplish that. Hoping the tanks prove the miracle fix for you that they have for me.

Joe