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        Cluster Headache Help and Support >> Cluster Headache Specific >> Not sure what is happening?
        
(Message started by: starlight on Aug 26^th, 2006, 6:46pm)

Title: Not sure what is happening?
Post by starlight on Aug 26^th, 2006, 6:46pm

Hi everyone. Haven't been here for a bit but I could use some help/insight. Something weird has happened during this cycle. Maybe someone else has had a similar experience? For the past 12 yrs I have always had a 6-8 week cycle--most have been closer to 6 wks with maybe 2 that lasted 8 weeks. Anyway, long story short, this time around my cycle peaked, and then at about week 5, it tapered off to 8 virtually pain free nights in a row with only the feeling of a HA threatening to come on in the morning and only 2 succeeded in doing so. That would be in my glorious headache history a very clear certain sign that my headaches are now over--they are on their way out and they are soon to be over. But this was not to be the case. On night number 9--my painfree run was over--I had six hits that night, and for the past 8 nights or so on average 6 hits a night. So what the F is going on? Honestly I am just very confused. Has this happened to anyone before or does anyone have any idea what is happening? Not trying to complain but when your cycles are consistent for so long and then they get totally freaky it is a little bit sucky.
Oh, wait...one other thing...I am kind of freaked b.c I know it is pointless to worry about "turning chronic" but the thought did make a brief appearance in my mind--the reason being--how come they went away for that long and then reappeared in such a frequent amount--i do usually get that amount but not at the end of cycle you know what I mean? it's just weird and. I am just scared of what is happening. So I guess one more question--do those with the chronic headaches get them in that kind of pattern--like what I mean is do they get them as these REM triggered or at least related headaches or do they have a different pattern? Curious because I do not like this new game the beast is playing.
Thanks for any help, Star

Title: Re: Not sure what is happening?
Post by Thomas_Martin on Aug 26^th, 2006, 7:59pm

hey Starlight.

As a chronic which have lasted around 2 years. I can only say be "patient" and wait and see. It's way to early to say if you are going chronic. Its always scary to get hit by something your not use too. It might just be that your CH is switching gears. It doesn't mean that you are going chronic. You'll need to "wait" it out and see. Hopefully it is just a fluke and your episodic pattern is just switching gears.

Best of luck
Thomas Martin

Title: Re: Not sure what is happening?
Post by Charlotte on Aug 26^th, 2006, 9:30pm

Starlight, sorry you're having freaky occurrences. Glad that you had 8 pf days.

Has your frequency pattern changed? as anything else changed?

Is your doc someone you can communicate with to reflect these changes or a butt head?

Don't worry about being chronic at this point.

Your moral suport and research links helped me so much during a rough spell. I wish I could do the same for you.

Charlotte

Title: Re: Not sure what is happening?
Post by Skyhawk5 on Aug 26^th, 2006, 11:52pm

It's not unusual for cycles to change, mine have, and many others on this site also. These things are scarey and upsetting, but we just keep on fighting the good fight. Skyhawk5

Title: Re: Not sure what is happening?
Post by georgej on Aug 27^th, 2006, 1:17am

I don't know what it means, Starlight, if anything. As has been said, it may only be the beast shape-shifting into another morph.

This spring my cycle ended far more abruptly than it usually does, but I've had odd things happen before. When I was younger, I'd occasionally get an isolated hit from nowhere when I was out of cycle--and it could be a bad one. Hasn't happened in a long time, but who knows?

Hope things slacken for you again soon.

Best,

George

Title: Re: Not sure what is happening?
Post by starlight on Aug 27^th, 2006, 1:08pm

You guys,

Thanks for the support and encouraging words. I think it is a morph going on. The changes are that I had them under control and then the PF days came--now I think they (the headaches) just kind of grabbed the reigns for a bit--after last night which was wicked bad--ass kicked by 3:30am--I think it is really the "true peak" going on right now. The changes that have occurred are--headaches have shifted from being behind eye to being on side of head--for some reason that is more painful and at certain times will not respond to oxygen--don't know why but that is what happened last cycle when they did peak and move to side of head. They last longer and just won't respond to O2. last night I had a 1hr. KIP 10 which finally went down after two cups of coffee (duh--shoulda tried that right away). Then of course it came back not too long later but then I remembered what someone on here wrote about benadryl and that seemed to throw a wrench in what was going on. Only one more HA and then sleep and then brief HA around 11am. But thank God for coffee and benadryl. Anyway, I think you guys are right--I think it is just morphing, peaking and all that good stuff.
Well, thanks for the encouragement and Charlotte, I am glad that some of my links helped out. You have helped me a lot too. PFDAN to all, Star

Title: Re: Not sure what is happening?
Post by maureenv on Aug 27^th, 2006, 4:47pm

Hi Starlight

I think I could have wriiten your post, I think I did about a week ago. I am having a very different cycle as well, I am at the 4 day pf night and wondering if it is going to get better or worse myself. When I asked on here about it someone said to just enjoy the pain free days and worry about what could happen when it does happen. So thats what I'm doing.

I'm am intersted about it shifting to the side of the head cause I found that is how it has been for me still the droopy eye and runny nose etc but seems more focused on the side is it like that for all your attacks or some?

Strange amost like unchartered territory.

Hope you are at the end and the peak is over
PF to you Maureen

Title: Re: Not sure what is happening?
Post by BlueMeanie on Aug 27^th, 2006, 7:47pm

Sometimes just when you think it's over, it's not over. The Beast can be a tricky bastard. Hang in there, you're probably right and just peaked and on the downward spiral to being PF.

Vibes to ya.

Title: Re: Not sure what is happening?
Post by starlight on Aug 27^th, 2006, 8:07pm

Hey Maureen,

Sorry to hear you too are going through weird happenings with the headaches.
The thing with it moving to the side of the head--most of my attacks are centered more behind the eye but this cycle and last cycle the beast seems to move to the side of head as the cycle is peaking--very bizarre. The effect that I notice from it moving to the side is that for some reason i don't know why it feels more painful and also gets trickier to fight with the O2. O2 works pretty great rest of cycle but I guess when peaking things might not work as well. I am hoping tonight is better. I hope your PF nights continue--in my experience always when the PF nights set in they continued (except this time YUK)--so stay optimistic. I will keep my fingers crossed for you! I think the weather might be throwing mine through a loop--it just changed very abruptly where I live from hot summer weather to cold fall-like weather--might have something to do with it. Keep me posted. I bet yours will stay away--sending you good vibes, Star

Bluemeanie,

Thanks for the encouragement--I need it after last night. I think you are right about the beast being a tricky bastard--couldn't have put it better myself. I am hoping the beast is making its final "statement" and then will be on its way out! Damn headaches! Take care, Star

Title: Re: Not sure what is happening?
Post by starlight on Aug 28^th, 2006, 2:01pm

Hi all--just wanted to update. Last night went SOOO much better. Only 2 HAs as compared to the 6 HAs I had been getting nightly. Had only 2 last night--one at 1:30am and another at 3:30 am (both were quite painful from the moment I awoke but the O2 got rid of them REALLY quickly--they did not resist the O2--there were no KIP 10 hour +long nightmares). Last night I took the melatonin I usually take and also added 3 benadryl. I attribute the improvement to the benadryl. Want to thank those who have written about benadryl here on the boards. Also want to thank everyone for being supportive. Wishing PFDAN to all, Star

Title: Re: Not sure what is happening?
Post by georgej on Aug 28^th, 2006, 2:23pm

on 08/28/06 at 14:01:25, starlight wrote:

Glad to hear you're doing better, Starlight. Could be you're coming out of them by the sounds of things.

Best wishes,

George

Title: Re: Not sure what is happening?
Post by kevinpix on Aug 28^th, 2006, 6:09pm

Being chronic, I never had cycles. I knew I was going to get hit everyday, and I hated it! I got from 3-5 attacks daily, no breaks. I'd get shadows amd rebound headaches from the meds. I had TN surgery and have been lucky so far. I still get shadows, and an occasional fantom itch. I hope you stay eposodic, keep your mind away from dwelling on the bad, it would be bad for it to happen. Good luck and have a painfree week!

Title: Re: Not sure what is happening?
Post by MJ on Aug 29^th, 2006, 1:47am

on 08/26/06 at 18:46:19, starlight wrote:

--how come they went away for that long and then reappeared in such a frequent amount-- Star

I was really hoping someone had the answer to this.

Sorry Starlight but I have never had an extensive break in cycle to match yours.
Might be worth trying to recall what you may have eaten or done differently when the pain free nights came that may have caused the effect ie; medicinal changes, thai foods etc...

Hope you can duplicate the PF effects again.

Title: Re: Not sure what is happening?
Post by starlight on Aug 29^th, 2006, 1:43pm

MJ--

Thanks for telling me about your experience as it helps to know what others have gone through with their cycles. For the past 12 years I have had 6-8 week cycles (usually 6 weeks) and have never had extensive pain free time and then a reemergence of the beast. I wonder if anyone else has had a weird break like that cause I know it ain't normal for me. I can't think of anything specific I did differently--only the freaky weather changes here.
Last night was pretty much the same as the night before only 3 HAs instead of 2. The last HA hung on a little more so I chugged some coffee with the O2. But all in all not a bad night at all. Hopefully they are on their way out and I will keep people posted. The benadryl seems very helpful. I wish I could figure out what is happening but I dunno just loving this benadryl right now...Take care PFDAN to all, Star

Title: Re: Not sure what is happening?
Post by starlight on Aug 29^th, 2006, 2:51pm

George and Kevin--

Thanks for the support guys. It helps a lot. Star