That I'm happy to be back here; it's bittersweet.

Ken is having very bad attacks up to 5 times per day with only 2 Imitrex allowed in a 24 hour period.

Doctor who is well versed in CH's isn't available until August 24th.

Hope is hard to have when things are like this.
Chuck, Leesa, magman, johnny... all of you, missed you guys.

Sorry for the long absence, life hasn't been very kind in the last 3 years since I talked to any of you last. Who knows if you even remember us...I hope you do.

I'll be looking for lots of support and hopefully some new developments in the supporters corner too.

The Beast woke him up at 4:50AM out of a dead sleep...by that time it was too late.  Took an Imitrex nasal spray and it didn't work until 20 minutes later.  A day missed of work and he can't have another trex until 11 PM (that was the last one he got).

Very disheartening...

On a better note...like I said, it is bittersweet to be back.
As much as I missed the CH family, it's times like the last few weeks that I'm not sure how to feel.

Hopefully I can talk to some of you soon.
Sorry if this didn't make too much sense but I'm working off of 3 hours sleep and a VERY long Father's Day weekend.


Toni

Sorry your back here again.

No O2?
Try Ice packs and Red Bull that what I do when I have nothing else.

Good Luck

Opus wrote on Jun 22^nd, 2010 at 2:13pm:


it looks like he is doing Nasal injections they are a little hard to split, I was going to say the same thing.

It is hard to get the vials now days I have to have them special ordered.

Toni,

I'm so sorry that ch is back in your and Ken's lives. But do read the boards for some new advice and tips. I'm sure a lot has changed since your last visit.

I do hope that this time ch will not stay for long! Wishing PF time for Ken,

Sanna

Sorry you are back!  If I may I would suggest you stay around during the off season, at least dropping in once in a while.  There are a few things that have been happening that might be helpful to you.

One of the biggest in the last three years is the move to higher flow O2 rates than were much in use three years ago.  I had given up on O2 because 15lpm just wasn't worth the hassle for the little relief I got.  However, new evidence shows flow rates of 25lpm and even higher to be MUCH more effective, and faster.  At 25lpm I can now knock out a hit within 5-8 mins, depending on how quickly I get on it.  It also does not have the side effects of Trex, and no limit on how often you can use it.  I strongly urge you to read up on the Oxygen info button to the left.  (The O2ptimask is worth its weight in gold also!)

Hope the Pred knocks it down for him. 

Jerry

Don't feel like you have to be hidden away in the Supporter's Corner!  That is for YOU!  Please feel free to hang around on all of the boards and keep us up to date on what is going on.  Be sure to read the oxygen info section very carefully and get as much info as you can to take with you to talk with your
Dr and the Ins co.  Show them the difference in the cost of oxygen as opposed to Imitrex and help them understand it is in THEIR interest to approve it.  Keep going up the chain if you have to until you find someone with the intelligence and courage to think it through rather than just say "No" as a knee jerk reaction.

Jerry

Hi all,

Again sorry for the delay.  Ken's cycle is BEAST this time around, it's never been so bad.  We got him into the CH doctor in the Bronx a lot sooner. Ken sent him an email to tell him what's been going on and he came in just for him, got him in the same morning.  He had no patients that day and made a trip into Albert Einstein just to see him.
He's been there twice since my last post and has another appointment on August 10th. 

He put him on Dopemax twice a day, not sure of the mg, upped his Verapamil to 240 (plus 1/2 a pill) per day and all the trex injections he needs.  He started him on a hefty dose of prednisone also that he's done with now and the CH's STILL came through all of it.

He doesn't want to give him oxygen because we smoke and it's dangerous. When Ken left his office the last time he said "thank you" to the doctor and the doctor said "don't thank me, I haven't helped you yet".  Love this doctor...he's so knowledgeable (sp?) about CH. He's a good doctor.

He's trying to break the cycle somehow, but nothing is working. It's never been this bad, even when Ken was 18 and just started having them 4 times a day.  It's depressing for him. I feel so bad.

Now his job is starting to question what he really has and it's affecting his work.  Yesterday was such a bad day for him, I feel so bad.  I really don't know what else to do.

He's at work now, getting a CH and he can't take another trex until 7 PM.  He walked in the door last night and looked like he had been beaten up becasue he had such a bad one driving home. 

I'm at a loss. Neither of us know what else to do and the doctor is scratching his head as well, not a good sign. 

Thank you for listening and all of the advice, all of you.

Helpless

For heavens sake 99.9999999% of Ch'ers smoke. Tell him I lovingly and in a Christian fashion said he is in direct conflict of his oath if he does not give you 02. Not giving 02 to a CH'er is akin to refusing insulin to a diabetic. It is cruel, and causes the person to experience excruciating pain, numerous times a day. That is SOOO unacceptable.

The fact that he is "uncomfortable" with prescribing 02 to a smoker shows he knows exactly zilch about CH. He may be sweet and talks nice to you, but staying with someone who will not give you 02 is like boarding the Titanic. Oh sure, we fully understand there is pain and misery on our horizon, but it's such a lovely time getting there! I know that's blunt.....and I am normally not blunt.....just getting tired of the number of docs who won't prescribe such an obvious solution to a problem  because of THEIR comfort level.

Joe

Rats.

Docs needs to stop fearing their patients. Chers aren't stupid. They know more about O2 safety than anyone.

Charlie

Wow is all I can say. Doctors that just want to throw more drugs at someone that can have way more long term ill effects, instead of an O2 prescription. Wow.

Maybe you can check into the facilities Lizzie2 mentioned. Your husband needs some relief. 10-15 minutes with 02 would leave him a fully productive member of society and his employers would not have any reason to be concerned.