Hi All,

I went to the nero today and she has me on a new setup , to start with she upped my O2 to 20 lpm so that means I get a new regulator ...Yeaaaaa  ;)

She told me that I may going chronic due to the new frequency and strength of my episodes. So she wants to try and kill this cycle to see if we can  :-/ so I am to use Prednidone at 80 mg per day for a week and then taper off 10 mg a day. She is hopeful this will break my cycle.

As a preventive I am to use Namenda it is a memory enhancer for Alhemizers patients. I love the fact I am getting a strong memory enhancer but hopefully this will keep the beast at bay as well.

Then as an added abortive I am to stop the Imitrex and use Zomig nasal spray but only 2 times a day. The rest of time just O2.

I hope this will work and I have a phone follow up in a week to see how it's going.

Has anyone had any experience with these meds I would love to hear your take on them.

Thank you,

James

That's EXCELLENT James!  The pred should give you some needed relief too!

Hi James,

Sounds like you've found a good neuro...great news.

I have never heard of Namenda for ch before, let us know how it works please! And that O2 flow sounds (20 liter/minute is what I think you mean) from a neuro is genuinely enlightened. O2 works most of the time for me and Zomig NS is my breakthrough savior. Only allowed 4/week due to its full body effects, and I have to make a quick decision on when to use...too late after hit starts and it may not work...but I love that stuff!!!!

Best,

Jon

Hey James,

Glad to hear you have a Doctor with a clue. I've had the Prednisone many times but a word of caution. I weigh 155lbs and Prednisone at 80mgs made me quite phsycotic. 60mgs was OK but at 80 I was buying things like I had more money than I did.

Just watch out, I didn't realize it was happening. The O2 is great but you may have to buy a regulator that goes above 15lpm. Most O2 suppliers don't have them. Let us know we can help. Also a mask like the O2PTI available on this site is very helpful. Much better than a standard NON-REBRATHER.

Good Luck, Don

James,

My neuro says the Namenda is being used with good results for CH. But watch for side effects. I took it about a month and had some "bad" ones. I didn't even realize what was happening until I was talking to a client and told her I was not feeling right. I just had no energy and was sleeping every chance I got. She'd had the same reaction to it and told me to get OFF it immediately.

Hope it works for you -- I have trouble with almost everything, but thought I'd warn you. Think I'm just alergic to meds... :)

Hugs BD

Great news onm the 02 front...maybe we are getting the word out! I use prednisone as a transition drug, provides me with 100% relief while I'm on it. Prednisone is funny with us CH'ers. For some, a powerful pred taper like you are doing, will abort a cycle completely. For others like me, it just masks it as long as you're on it, but they come back as soon as you go off. Hoping it "busts" the cycle for you!

I haven't heard of the other med but please keep us posted on how it works for you. Sounds like you're making positive progress and have an effective battle plan. BOTH can totally change your outlook towards the beast.

Just one word of caution, don't spend too much time worrying about going chronic. If it's going to happen it will. You can spiral yourself down fairly quickly worrying about it. ;)

Joe

What Joe said about going chronic... if it happens it happens. Just don't spend a lot of time worrying about it. I've been trying to break this last cycle since 97 -  :)  Know it's gonna end any day now...

Hope the new meds work wonders for you and you go into a PF cycle soon...

Hugs BD :-*

As Joe and Barbara said about going chronic, don't worry about it.  You can't change it one way or the other.  I do hope you can break the cycle and then find a way to prevent their recurrence.  However, if you do go chronic it is not the end of the world.  There are several of us on here who are chronic who have learned to live life to the fullest anyway.  I am fortunate in that mine is not nearly so severe as some, but since going chronic almost 6 yrs ago I have learned how to deal with them, and in knowing they are coming I don't live in fear.  I have had a couple of 1-2 week breaks in the last year, and frankly the days that are PF are a mixed bag.  I feel like I'm walking on eggshells waiting for it to hit, and I don't take full advantage of the PF time.  Also, I think that in being chronic I have learned to compensate for the attacks in ways that I deal with them much better than I ever did as an episodic.

I'm NOT saying I hope I stay chronic!  I would much rather they were gone totally, but if i must have them I think I would rather stay chronic than to go back to episodic.

JMHO YMMV
Jerry

BarbaraD wrote on May 28^th, 2009 at 4:12pm:

What Joe said about going chronic... if it happens it happens. Just don't spend a lot of time worrying about it. I've been trying to break this last cycle since 97 -  :)  Know it's gonna end any day now... Hope the new meds work wonders for you and you go into a PF cycle soon... Hugs BD :-*

Today makes me chronic. The beast wanted to have a party but I sent his ass packing, the same as I would have yesterday.

It's not as big of a deal as it seems, really. I hope the meds break your cycle though!

PFDAN
Mystina

Hi Everyone and Thank You,

There are times I feel like whats the use and others I'm so pissed I could kill that guy that looked at me funny. But mostly I'm tired and trying to find a good way through it.
But for the good news  :)
I only had 2 hits last night and the O2 knocked them out. This new drug combo has me alive again I mean my mind is working I don't feel like I'm walking in 3 ft of mud and so far today no visits (knock on wood) my normal cycle  had the beast at my door anywhere from 6 to 7 and tonight at that time I was playing with my boys (THATS A MIRACLE) anyway today I'm hopeful and looking forward to tomorrow and man it's been a long time since I have felt this way.

Update: Apria medical equipment dropped off my new regulator today and took my old one, it was a dial style and went to 17 lpm. My nero wrote a script for 20 lpm and they gave me a brand new shiny clicker regulator that goes to 15 lpm >:( I get the script upped to 20 lpm and they take my 17 lpm and give me a F*&#ING 15 lpm what the heck. Anyway I'm on the phone again tomorrow to hopefully get my old one back.

Oh and just to let you know my Nero is the head of neurology dept for Kaiser in Portland Oregon and she specializes in headache medicine, so yea I lucked out there as well. I'll keep everyone updated.

Thanks again,

~James

Saw your recent message.  I was chronic (5 out of 7 nights per week for 5 years).  I have good weeks where it is only about 3 nights, but they never ended.

Last year I increased my Verapamil to 750 mg.  (Large dose) but it seemed to work.  I am now about 2 weeks on and three months off, so it is getting better.  I still take the O2 (although my limit is as high as yours) and it still works pretty well.  The imitrex shot is still the best abortive out there.  It works within two to five minutes.  I didn't feel the Zomig worked as fast, closer to 10 minutes, although it did work.  Prednizone always stops the headache while I am taking it, but as soon as I go off the prednizone the headaches are back.  I use the prednizone if I'm going on vacation, just to be sure that I have a ten day break with no headaches and I know it won't ruin my vacation.
I'm confident the prednizone will help to give you a break.  If you haven't tried the verapamil, ask about it.  I haven't tried the Nemanda, but I will ask about it with my neuro.  Anything that helps....

Best of luck.