Hi there I just want to say hi 

And dang glad you found us! Start a new thread under the getting to know you thread. Let us know what you've used in the past and what's working or not working for you now. And get oxygen!!!!!

Guiseppi

Quote:



*LOL!!!*

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or should work as well
Oliver

Hi, everybody. I'm not exactly new to this site, but it's been a long while.

I've had CH for about 23 years, long misdiagnosed like most until about 10 years ago. I'm left sided this time (as with most, with a few exceptions some years), watering eye, congested nose, weird raging diarrhea (especially because I'm almost chronically constipated), and episodic. Cycles are usually about 1 1/2 to 3 months. Last year, I had two cycles with about a month and a half break in between, ending around September. They don't follow an exact month pattern at all. They usually start with the wake up fun, and then settle out into the same time every day. This cycle (past two weeks) has been odd because I've had 1-3 in a 24 hour period, times changing...

I have a few major obstacles to work out. I don't have insurance, and won't be able to afford it right away. Even still, I live in New Orleans, so even when I was in cycle last year and had insurance, I literally could not find a neurologist who could take my appointment in under a two month time frame (that's the way it is in New Orleans post Katrina, still). I just gave up and got what I could in meds from old ER visits and GPs (general practice docs) who would listen to what I asked them for. This time, having no insurance means ER docs who are becoming more and more afraid to give you anything, especially going as far as prescribing preventatives or abortives to someone just because that's what they say is wrong. So they want to do a bunch of tests that come up clear, racking up med bills that I will never be able to pay, only to send me home with an "I'm sorry, hope you feel better."

In being diagnosed before, I at least have found one abortive med that works about 85% of the time - Zomig - but I have also learned that I can't take it as often as I have CH because it will make it and the shadows worse. All of the narcs that a few ER docs will give knock the edge off, but the last thing I want to become is a dope head. I actually had an oxygen tank last year (I requested it after giving info to a GP doc), but I didn't know I needed to use it at 15 or above and  he gave me the nose attachment...I didn't know I had to use the face mask. So oxygen only distracted me, calmed me a bit, but didn't stop anything. Now, without insurance, I'm not sure if I'll get the chance to try it the correct way now. I have no idea how much it might cost out of pocket if I can get a prescription next week, from a GP at a free clinic. I'm not very optimistic about it, because they've already mentioned a referral to a neurologist with one of those two month waiting lists.

Other than that, I've been given Prednisone and Verapamil in the past, and taken a long list of other stuff before that. To be honest, I'm not sure if I've gotten to try some of this so late in the game that the cycle just ended on its own, if any of it was prescribed correctly...I feel like in preventatives, I'm still at square one with knowing what actually might work. It's just trying to get to a doctor now, I feel so exhausted emotionally and physically it's hard to have the patience to work through the guessing game, especially when my resources and options are so limited - at least to my knowledge.

I'm trying not to get to that "hopeless place". I actually have good people in my life, but they are all new to what I'm dealing with. I am trying to begin that communication and get better at asking for help and support. Even when the darkest part of that place looms for me, it tells me just how serious CH is, because I actually have some pretty wonderful sh*t to live for. So, I'm trying to find a plan, some optimism, and open that one eye just a bit to see the light at the tunnel. I could use some friends that "get it". I'd love to get-to-know, take my mind off the gloom, get ideas, and just share. For now, I'm just waiting. Peace.

Hi my name is Nancy. This is my first post and if I sound a little desperate I'm sure you'll understand. It's 2am here, just finished my first ache of the night. Just waiting for the next one to hit. Don't have O2, hell just learned about it the last couple of days reading posts here. Have had clusters for the last 20 years, I'm 43 now. Have a Dr. appointment with a spine Doc tomorrow ( I have a bulging disc in my neck and lower back ) to o.k. me for a nerve block, but I need to make it untill then. Tried everything I know to do. Been taking aleve every 6 hours, powered down a 5 hour energy drink, used ice, even tried imagining a big hammer banging down pointy spikes with every rock, and still I'm at a 7 with a 10 coming like an out of controll steam engine.I'm one week into a 12-14 week cycle and ramping up fast. Any ideas? Thanks!

Thanks for the reply Denny. Problem with getting to the Doc who first diagnosed me. Lived in Plano Tx then- now I live in the wilds of Wyoming and even trying to get into see a GP can be problematic. Most specialist are only in town once or twice a week and the next nearest town that could offer anything is well over 2 hours away. Will ask for an O2 script though and hope that works. The problem with imitrex was that it worked for the headache I had at the time, but I'd have another half an hour later, and than another one an hour after that one ended, and so on. Used the inhaler though so is the injection any better?

My first time on CH.com but not a stranger to CH.  I was diagnosed back in 2004 after I had colon surgery.  That cycle lasted 43 days with the beast kicking my but 2-3 times a day.  I was very un-educated about CH along with my doc (who is excellent and helping me now in every way).  Not knowing about CH I was taking imitrex 100mg pills 4 times a day.  That lead to the famous reboud headaches. To make a long story short, I read about using O2 and that saved me.

Now, 6 years later I am in another cycle. My CH is episodic with remission lasting unsally 18 months.  This one is bad and I am in the 23rd day with 1-2 a day and many shadows.  I did learn to stock up on imitrex statdose.  I started this cycle with 18 injections and a couple of 100mg pills (which I still have).  I have 8 left and getting worried.  My problem is I work outside of the country and in Rosario Argentina right now so getting oxygen is tough.  On March 31 I'm outta hear but you all know that is a long way away.

I am very loyal keeping my log which is an important tool for me to gauge what is coming up next. Also being a part of this family is an important step for me. I have never spoke to anyone that had CH before.  No longer alone...... My wife reads web sites relating to CH and she is getting stronger by the cycle.

So I'm going to enjoy my day and wait for the night 

CD

Thanks for the reply and it is great to hear from a from a friend.  I will be checking out the site you sent to stretch out the statdos.  I did find out last night that I don't need a prescription for O2.  How did this happen! Went to a local doc and he was totally against this saying it doen't work.  Instead he had a nurse give me a shot of a painkiller that barley scratched the surface, but I did sleep which is gold nowadays.  Anyhow my wife asked the nurse and she said just go to a drug store for about $50 bucks and get a supply for a month.  Sweet.

The other meds you talked about are new to me but wil look into it.  Today was shadow free and it is 9:30 PM getting close to the beast attack.  Thanks again and love this site

CD

I don't know if I'm doing this right but I want to let some one know I'm here.  Bless coach_bill for getting me here. My first I can remember was only about 5 years ago. Since then the longest I've gone without a hit is 3 months.  I cannot go on with much more right now but I'll be back tomorrow.  I did not not get diagnosed until Jan. 2009.  I've spent a lot of time by myself.  I only hope for acceptance to this sight, I'll be back soon.

Hey Dusker and Buzz Hog (or is that Buzzer and Dusk Hog?),

It would be very cool if you could create new topics introducing yourselves here in the Getting To Know Ya forum.

If you could use some input from some folks who have compared a lot of notes and found some good solutions, that's where they'll likely see your posts, whereas this topic is a bit obscure and your posts can be easily missed. I only noticed them by chance myself.

Hi to all !  I'm also new to this sight and I can't tell you how grateful I am to all who have responded with help to my questions and offered advice.The information that is shared is here is tremendous. This curse affects us in so many ways, and only we  CH's can understand that. It takes time to sort it all out. I'm one of the lucky ones who got a quick diagnosis, 1 month into my 1st cycle. My heart goes out to all of you who have suffered with this for years, no knowing.
This week I finally got an appointment to see a nuero, next month and  I'm hopeful I will get the needed prescriptions and quickly find what will work best for me. Things are looking up. Still dealing with daily shadows, eye droop, tearing, annoying head pressure that never goes away, but I'm dealing and not crying any more and that's a "good thing".
God Bless
Donna Mae