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        Cluster Headache Help and Support >> Cluster Headache Specific >> Still getting hit...... advice??
        
(Message started by: prcole18 on Sep 24^th, 2006, 2:07pm)

Title: Still getting hit...... advice??
Post by prcole18 on Sep 24^th, 2006, 2:07pm

Hi people, back to the doc tomorrow for more Imgran injections.

Ive been on 480mg Verap for a while now & although I think they may have eased my hits on the kip scale, i'm still getting hit :(

Im taking 9mg Melatonin at night & I did have 3 or 4 night PF but now im getting hit again. I'm currently getting through at least 2 Imigran jabs a day.

The mild hits I can sometimes abort with redbull.

What I want to know is should I ask my doc to up the Verap, or is there anything else anyone can recommend??

This cycle has been going since the middle of July & i'm now getting a tad pissed off!

Any advice appreciated.

Title: Re: Still getting hit...... advice??
Post by Linda_Howell on Sep 24^th, 2006, 2:39pm

The usual dose of Verapamil is higher than what you are taking, so yes....I would ask my Dr. to increase it.

You don't say, but are you also taking oxygen? That will help in aborting a HA.

Title: Re: Still getting hit...... advice??
Post by TxBasslady on Sep 24^th, 2006, 2:46pm

Definitely agree with Linda on the 02...since you're going to the doc anyway...you might inquire.

Good luck,

Jean

Title: Re: Still getting hit...... advice??
Post by prcole18 on Sep 24^th, 2006, 2:47pm

Hi Linda, no I don't use Oxygen as it never did a great deal for me in aborting my ch's.

I acctually want to try Frovatriptan which I have here as it can give up to 24 hours relief, but im afraid to as if it dosen't work I wont be able to use an Imigran jab

Title: Re: Still getting hit...... advice??
Post by Linda_Howell on Sep 24^th, 2006, 3:03pm

I meant to put this in my last post but I just now found it. ::) From our resident walking encyclopedia, Bob Johnson:

dosage of Verapamil

Quote:

Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day.

I am so sorry when people say that 02 doesn't work for them. It does work for about 70% of us and it certainly is a Godsend for those who cannot afford the expensive drugs, or who can't take them as a reult of some other med. problem. It's also the safest way to abort and for me it's been a life-saver.

Title: Re: Still getting hit...... advice??
Post by prcole18 on Sep 24^th, 2006, 3:16pm

I'm pleased for everyone that can abort with O2. Good thing is here in the UK, my doctor is excellent & will give as many Imigran jabs as I need.

Think i'm going to get him to up the Verap

Title: Re: Still getting hit...... advice??
Post by Guiseppi on Sep 24^th, 2006, 3:19pm

I didn't have any luck with verapamil but I have since learned the dosing was way too low. I've had succes for many years using lithium as a preventative when on cycle. I'm male, 46, about 190 pounds, enjoy long walks on the bea.....ignore that last part......I take 1200 mg of lithium a day when on cycle and get very few breakthru headaches.

I'd try getting him to up the verap since you're already there but keep lithium in mind in case the verap fails you, good luck to you.

Guiseppi

Title: Re: Still getting hit...... advice??
Post by TxBasslady on Sep 24^th, 2006, 3:25pm

on 09/24/06 at 15:19:05, Guiseppi wrote:

I'm male, 46, about 190 pounds, enjoy long walks on the bea.....

LMAO [smiley=laugh.gif] ....not all is lost as long as we keep our sense of humor [smiley=huh.gif] ;;D

Jean

Title: Re: Still getting hit...... advice??
Post by Charlotte on Sep 24^th, 2006, 3:31pm

Guiseppe, you goose.

Prc, when you tried O2, did ou have acluster mask or the type of regulator those who've had success used? It might be worth another try, sometime.

Many times our lack of success with something is directly related to poor instructions on how to use, increase, decrease, and what to expectt at different stages.

Charlotte

Title: Re: Still getting hit...... advice??
Post by Bob_Johnson on Sep 24^th, 2006, 3:36pm

Print this and take to your doc. It covers the question you ask and supports--from an expert's perspective--your need for higher dosing.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Still getting hit...... advice??
Post by prcole18 on Sep 24^th, 2006, 4:40pm

What is the side effects of lithium?
Also can this be taken with Verap or instead of?

Title: Re: Still getting hit...... advice??
Post by chewy on Sep 24^th, 2006, 5:58pm

Quote:

What I want to know is should I ask my doc to up the Verap

Bingo !

Title: Re: Still getting hit...... advice??
Post by roy21302 on Sep 24^th, 2006, 6:30pm

Does your GP know you are using 2 Imigran injection every day, that is possiblily causing you rebound headaches, it is too many read the paper work that come in the box with the refills or ask the Doc Cheers Roy

Title: Re: Still getting hit...... advice??
Post by Kevin_M on Sep 24^th, 2006, 7:09pm

on 09/24/06 at 14:07:17, prcole18 wrote:

Ive been on 480mg Verap for a while now & although I think they may have eased my hits on the kip scale, i'm still getting hit :(

I'm currently getting through at least 2 Imigran jabs a day.

480 mgs will due ok for me the most part throughout the year but at times there are breakthroughs similar to yours at 480. I creep up to 600mgs for a couple months until it is safe to gradually go back to 480 again. As the CH fluctuates, more and sometimes less prevention is gradually needed for me periodically, at times, 360 will do too.

Ask your doc.

Title: Re: Still getting hit...... advice??
Post by prcole18 on Sep 26^th, 2006, 5:59am

Thanks for all your replies, don't know where I'd be without this place.

Doctor said yesterday he wont up my verap he wants me to wait untill next Tuesday when I see my Neuro.

Had one of my worst days yesterday, i'm not even going to say how many jabs I had, problem is ive got fuck all else to abort that works!

Just rang the doctor aging a minute ago to get a prescription for some O2 which i'm willing to try again but he said it has all changed, O2 can only be prescribed from my neuro :-/, saying it has all changed this week & gp's are no longer prescribing this.... great then !

Anyway things were so bad yesterday I even started another pred taper which I said I would never do, anything to try & get some PF time & cut down on these bloody Imigran jabs, which are possibly causing rebounds.

The other thing the Gp said yesterday was that my neuro was having a lot of succes with Topomax (think thats what it is called) but again wouldn't prescibe it as he wants to leave it to my neuro next week.

I take it Topomax is a preventive, has anyone had any success with this?

many thanks again

Paul