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        Cluster Headache Help and Support >> Cluster Headache Specific >> Weird Cycle / Also Have lingering Hheadaches
        
(Message started by: LetItSnow on Jan 26^th, 2008, 8:25pm)

Title: Weird Cycle / Also Have lingering Hheadaches
Post by LetItSnow on Jan 26^th, 2008, 8:25pm

Long story short- I am 36, I first started getting CH when I was in my early 20s at college. They were always triggered by alcohol.

I either popped a ton of tylenol (which I now know is bad) or just stopped drinking until the cycle was over - of course, I didn;t know that unless I had a drink.

Having a bit of an addiction to alcohol didn't help, but a CH sure stops the urge to drink when you know the Beast will be a Kip10.

Anyway, I didn't know what a CH was until 3 years ago when I was 33 and decided to go to a doctor when I got a CH without any alcohol at 12pm !! Then again an hour after I went to sleep (again, without any alcohol) The next morning again at 11am ! My pulse and BP were sky high. My regular doctor took me within an hour of describing my symptoms and referred me to a neurologist. Which I couldn't get in to see for 2 weeks - but I think it was at the end of my cycle.

The neuro gave me 180mg Verapamil. That worked until a month and a half ago. I drank as usual for the those 2 1/2 years, and at most a shadow, but only when I drank.

About a week before Xmas this year, I drank as usual, but 4-5 hours afterwards, a CH came on. Kip5 the next day 3 hours after, Kip7, the next 1 hour after, kip10 !

My neuro upped my verapamil to 240 and I used Imitrex injections for the first time (those worked wonders!) but I kept getting Kip10s for over a week, and used 9 'trex injections in 10 days - my neuro screamed at me for using that much and put me on O2, and then upped my verapamil to 360.

My neuro went on vacation for a week, O2 was working , but as soon as I stopped it, the CH came back- so I upped my verap. my self in stages until I got 480mg, and things seemed ok finally. but the verap. at that level was making me very tired.

But now, I have not had a CH above a kip 3 in about 2 weeks, but I continue to have these lingering shadows that are usually a kip1 or 2, and I started to drink alcohol again in the last few days- I get kip 2 or 3, nothing higher, the O2 will bring it down, but only while using. I can sleep w/o a problem.

How long do these shadows last, and why did the CH come back after 2 1/2 years of nothing?

Do CHs end as one gets older ?

and thanks for listening! this is the first time I told my whole story !

Title: Re: Weird Cycle / Also Have lingering Hheadaches
Post by coach_bill on Jan 26^th, 2008, 9:07pm

hello. just like you im just starting to figure out what this ch shit is all about. just like you started in my 20s evry couple years, worse every time, im 39 now. i had the mri, u should as well. every single time i got this cluster headaches the doctor gave me prednazone. and it stoped it every single time. within the 1st day.(although it did come back this last time) but as soon as i went back on them it was gone again. so talk to the doc about that. 95% for me is when im asleep, it wakes me up dead cold kip 7--8 moving up fast. i never get the shadows. its kinda just like boom with me in the day attacks as well, so there is something that will work for you , you just have to find it. as for the drinking triggers, well no ones perfect, but i really dont think there are to many of us who have not had to given up something that we loved because we thought it feeds the beast, at least when he comes...good luck. coach bill

Title: Re: Weird Cycle / Also Have lingering Hheadaches
Post by Patrick_A on Jan 26^th, 2008, 10:35pm

Oh wow..... So much to learn.
My 1st time using Verapamil, It took me 960mgs to stop my CH's. My heart felt like it was all mush.
This last episode I was able to stop the CH with only 240mgs. I don't have a clue why the large differences in success. But I know for sure you'll need to work with your Neuro to determine what is best for you. Good luck!

P_A

Title: Re: Weird Cycle / Also Have lingering Hheadaches
Post by DennisM1045 on Jan 27^th, 2008, 8:03am

Hi,

on 01/26/08 at 20:25:16, LetItSnow wrote:

My neuro went on vacation for a week, O2 was working , but as soon as I stopped it, the CH came back

These are called reattacks. It happens to all of us at one time or another. I usually back up O2 therapy with an energy drink. O2 knocks the beast down and the 1000mg or Taurine you get in an energy drink helps keep the beast at bay. Other folks use Taurine tablets or mix their own Taurine concoction from power because its cheaper.

Quote:

so I upped my verap. my self in stages until I got 480mg, and things seemed ok finally. but the verap. at that level was making me very tired.

Repeat after me: NEVER SELF MEDICATE. This is a really bad idea. Verapamil is a calcium channel blocker. Take too much and it can cause heart rythm problems. Feeling tired, heart rate bottoming out, ... Only do this at your doctors direction. Your Dr should be monitoring your heart with regular EKGs too.

Instead, stick with the O2. If you have to drain the tank keeping the beast at bay it is better than having your heart stop beating.

Quote:

But now, I have not had a CH above a kip 3 in about 2 weeks, but I continue to have these lingering shadows that are usually a kip1 or 2, and I started to drink alcohol again in the last few days- I get kip 2 or 3, nothing higher, the O2 will bring it down, but only while using. I can sleep w/o a problem.

So it seems that your cycle is shutting down - that's good. Lay off the alcohol till the shadows are gone. I know shadows suck. They're persistent and annoying as hell. I've not found anything that is very effective against them yet. But I'm still looking ;;D

Quote:

How long do these shadows last, and why did the CH come back after 2 1/2 years of nothing?

Do CHs end as one gets older ?

Good questions. Unfortunately there aren't any answers. There are some folks that go into remission and never have another HA. There are some people on this board that are old as dirt ;;D It's a very individual thing.

One thing that is constant about the beast is, it morphs, constantly. Something that worked last cycle might not work this cycle. Other things that didn't work in the past might be your magic bullet this time around.

Quote:

and thanks for listening! this is the first time I told my whole story !

Thanks for sharing it. I hope this all ends soon for you.

-Dennis-

Title: Re: Weird Cycle / Also Have lingering Hheadaches
Post by kcopelin on Jan 27^th, 2008, 8:49am

Thanks for sharing your experience...and welcome home. A wealth of info and support here.

O2 + some folks take cafergot or other pill form of abortive before sucking O2-might help.

If alcohol is a trigger, which it is for many of us, ya gotta choose between it and higher levels of CH. Not sure that not drinking stops it altogether...but adding alcohol can certainly make it worse. Try giving it up for the duration. PM me if you'd like to talk about that.

shadows are a bit dicey...I use energy drinks-RipIt is less expensive but have all the ingredients. Taking a walk in nice cold air also helps me. But, like Dennis said, it morps so what works now may not work later.

Also like Dennis said-do not adjust your medications, especially verapamil-without talking to the doc.

Pain free wishes,
kathy