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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Chronic and "Cycles"
        
(Message started by: kimmeesue on Oct 9^th, 2005, 6:55am)

Title: Chronic and "Cycles"
Post by kimmeesue on Oct 9^th, 2005, 6:55am

Like many of you, when I was episodic, I could just about set the clock by my HA. But since becoming chronic I seem to have spells where they are all over the place. Especially when I am on preventive meds. Depakote seems to be giving me longer periods of relief but when I get hit it might be the usual 8-9 pm and 4-5 am (one or both) or, as last night/this am it has been a series of shorter hits all night long. Gave up and put on the coffee hours ago.
Has anyone else experienced anything like this. I seem to remember a similar experience once before but my memory is lost somewhere in the fog.

Kim

Title: Re: Chronic and "Cycles"
Post by yikes-another-one on Oct 9^th, 2005, 7:26am

:P
sucks when you can barely catch your breath
between hits.

But hang in there. [smiley=hug.gif]

It won't torture you much longer.

You will outwit and outplay, outlast the beast. 8)

You are a survivor.

Let me hear you ROAR!!!!!

Title: Re: Chronic and "Cycles"
Post by kk on Oct 9^th, 2005, 7:32am

I’m not sure where we draw the line between chronic and episodic but I’m experiencing the same problem you are. Typically I get mine between 8 and 10 PM but this cycle I’ve been getting 2, 3 and sometimes 4 per night. I’m going through trex like there’s no tomorrow. I went to my doc last Tuesday and he gave me an IV drip of Solumedrol and two weeks worth of Depakote. I was HA free for two days after the steroid but they’re back and hitting hard. I asked about O2 but he said the trex was more efficient because of the portability issue of O2.

I’m in my 5th week of this cycle so I keep my sanity by thinking that any day they should stop. I think I’ll try Melatonin again to see if it will help with the frequency of nighttime episodes. I really need to get some sleep!!!!

Good luck and I hope your chronic condition is only temporary.

Ken

Title: Re: Chronic and "Cycles"
Post by donn_dunbar on Oct 9^th, 2005, 9:07am

hey kk and anyone else: i stongly urge you to try this "cold" treatment!(i know they don't work,but read on) GET A POPSICLE (ice pop not cream) LAY ON YOUR BACK (melts in your mouth not on your arm) KEEP THE END(or tip) ON THAT "HOT" SPOT ON THE ROOF OF YOUR MOUTH (slight rubbing feels good but the goal here is super cool just that spot) HOLD IT THERE TILL IT MELTS (try not to eat it) REPEAT AS NEEDED (or just to eat one) let me know? donn

Title: Re: Chronic and "Cycles"
Post by E-Double on Oct 9^th, 2005, 9:13am

Kim,

It appears that many chronics (includind myself) have cycles within cycles.
There are periods of higher activity, frequency, intensity, etc.
I went from episodic (unmedicated/un/misdiagnosed) for nearly a decade and only experienced attacks at night and would have 1 that I could set a clock by.
When this "cycle" began in March 05 it took a couple of months for it to take hold and for me to finally get diagnosed. By that time they went from nocturnal to all day and night and were completely without pattern.

I have had periods throughout the year that have been completely a mess with random attacks, that have been of high frequency and major high intensity as well as duration.
I have also had random days where out of nowhere I needed to get my ass to the ER because I couldn't break an attack.
I have also had periods of 1-2 hits a week in contrast to 6-10 per day.
Have yet to go a full week PF BUT things have finally stablized for me.
I am pretty damn sure that my prevents are finally working. I am on a verap lithium combo and the attacks are finally back to a pattern. 1 in am & 1 in pm with the occasional mid-day. This is a blessing for me.

E

Title: Re: Chronic and "Cycles"
Post by Jill on Oct 9^th, 2005, 10:22am

Kim...

I have been chronic for three years now - started out that way. I have the cycles within cycles - times where they change randomly on when the attacks will come and how hard they will come.

It seems that just when you get 'used' to a certain pattern, the beast throws you a curve ball and changes everything! I am going through that right now - they are coming so much more frequently and harder than usual... go figure.

I have also noticed that when using preventatives, they seems to get worse. I started Keppra about two weeks ago - rather tried it - and within two days, the headaches took a turn for the worse. Now that I am off of it they have slowed down slightly... maybe it was just that kind of medication, I dont know. And when I could take imitrex, the attacks would be shorter but more frequent - I think others have mentioned this too.

And there was one more thing that I wanted to say and forgot... losing brain cells from too many attacks I suppose. Hope this helps and that you get a break soon.

Jill

LOL - just remembered - I have noticed alot of people starting there cycles now as fall approaches, have any other chronics noticed a change in there headaches lately? Not to change the focus of the thread, just curious...

Title: Re: Chronic and "Cycles"
Post by Jonny on Oct 9^th, 2005, 10:37am

on 10/09/05 at 07:32:45, kk wrote:

I asked about O2 but he said the trex was more efficient because of the portability issue of O2.

Your doc is an idiot, ANYTIME you can use an abortive that has no side effects is the best way to go......Plus, you can carry an E tank anywhere.

Have you ever thought about the fact that the Imitrex is increasing the frequency of the attacks?......It happens to so many people and they dont know it until the get on a different abortive.....such as Zomig nasal spray (works just as fast as a Trex shot for me)

Good luck!!

Title: Re: Chronic and "Cycles"
Post by Opus on Oct 9^th, 2005, 11:43am

Kim,
While on preventatives I usually have a lot of PF days, but every 5 or 6 months this changes to 4 hits minimum every day, lasting for a month. I then go back to my normal strange cycle of 1 or 2 hits on Saturday and Sunday morning. During my 1 month cycle I have set times they hit but they are about 8 times a day so different times get skipped on different days. I also get trigger hit, like the one that hit on the same part of my way home from work, no matter what time I was driving it.

Jill,
I have noticed an increase in hits this fall. I am now getting hit Friday through Monday with up to 3 hits a day.

Opus/Paul

Title: Re: Chronic and "Cycles"
Post by nani on Oct 9^th, 2005, 12:03pm

I was a chronic with more severe "cycles", Kim.
I was almost never had the "set your clock by" HAs. Only way back in the early years, when I was episodic. The cycles weren't predictable, but the hits were. That's the thing about this thing... we're all different and it often changes on each of us, too. :-/
PF wishes, nani

Title: Re: Chronic and "Cycles"
Post by LeLimey on Oct 9^th, 2005, 4:04pm

I'm finding the same thing myself, I seem to be getting 14-20 days of 3 hits per 24 hours period fllowed by 7-10 days when the you-know-what hits the fan and I don't seem to know which way is up. The hits go completely random and stronger although I can still abort with o2, it just sometimes seems to take longer. Having said that I lose all track of time while getting hit and while getting back to being me afterwards. The timings I'm having aren't precise which makes it tough but knowing that the rough spell is going to end is a "comfort" (using that word with a grimace :-/ )

Title: Re: Chronic and "Cycles"
Post by Kim Y. on Oct 9^th, 2005, 5:51pm

Kim

Although I can't officially say that I am chronic I can honestly say that I am feeling the weird cycle in a cycle or so I think anyway. I go a few weeks where I feel shadows but usually are dull to mild and then out of no where get sharp shadows and hits for an unknown amount of days (I lose track).
Quote:

my memory is lost somewhere in the fog.

Feeling that way these days as well.

[smiley=hug.gif] Kim All the PF wishes and vibes I can muster are headed your way.

Title: Re: Chronic and "Cycles"
Post by kimmeesue on Oct 9^th, 2005, 11:07pm

I finally got some sleep today and have had nothing more than a few little jolts just to remind me.
I guess I keep thinking I can figure this thing out and I may as well give up....if no one else has I'm not likely to either. Einstein I ain't.
Thanks everyone.

Title: Re: Chronic and "Cycles"
Post by BarbaraD on Oct 12^th, 2005, 6:29am

Kim,
Just hang in there. I've been chronic since 97 and they don't seem to be going anywhere. Like others I have cycles in between the chronic. Usually when I relax. So just stay stressed I guess.

Depression goes with it and you just have to learn to "perk" up (if that's possible).

I agree with Jonny about the 02. Find some welding O2 if you have too. The doc is an idiot. I use black coffee and O2 as an abortative.

Right now I have a cold and that's triggering them big time.

But the one thing to remember is that you are NOT alone. We're all waiting on the day a cure is found.

Hugs BD