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        Cluster Headache Help and Support >> Cluster Headache Specific >> The never ending cycle
        
(Message started by: bothofus on Nov 3^rd, 2006, 4:55am)

Title: The never ending cycle
Post by bothofus on Nov 3^rd, 2006, 4:55am

Should have been over by now............... :-/
Doc upped the verapamil to 400
Never had them last this long
It's got to get better, yeah, well when?
Could be worse I guess
Thanks for letting me vent
Carl

Title: Re: The never ending cycle
Post by BB on Nov 3^rd, 2006, 9:21am

Hang in there Carl

There are many others alongside you..

Just keep going, one step at a time, tomorrow will always bring new hope ..

Painfree wishes to you

Annette

Title: Re: The never ending cycle
Post by NovellRed on Nov 3^rd, 2006, 11:14am

Carl,
It will stop. They are just not predictable. The last one you had may be the last one you will ever have. That is the thought that keeps me going.
Hang in there tough guy, (you gotta be to handle this crap) it WILL stop! You WILL win!

Title: Re: The never ending cycle
Post by TonyYZF on Nov 3^rd, 2006, 1:49pm

Hi Carl,

Sorry for the headaches. We can certainly relate.

This is a long shot...a very long shot...but

My wife suffers from a few somewhat rare conditions. Chiari Malformation, cranial instability and a tethered chord. She has fought daily headaches for 7 years with no diagnosis from neuro's and all sorts of other doctors. We finally found through research about these conditions that tied into her symptoms. She was recently diagnosed at the Arnold Chiari Institute where they specialize in these specific and related conditions.

Anyway, if you have some other symptoms that may seem wierd and totally unrelated to your headaches you might want to look at the following website. I am not implying by any means that you may have any of these conditions, but i know the frusteration my wife has gone through with doctors always telling her that they could not find anything wrong.

Like I said it is a long shot, but it is amazing how many people have these conditions and suffer undiagnosed because many doctors just don't have the expertise in this area.

Good luck.

http://www.northshorelij.com/body.cfm?id=6458&oTopID=6458&PLinkID=6407

Tony 8)

Title: Re: The never ending cycle
Post by TonyYZF on Nov 3^rd, 2006, 1:50pm

Sorry folks...totally the wrong thread...my bad...duh

Tony

Title: Re: The never ending cycle
Post by Guiseppi on Nov 3^rd, 2006, 4:55pm

It's been a funny year for a lot of people. My normal 2-3 month cycle went 8 months before it finally let go of me. Every time you think you have a handle on the damned thing it'll morph on you, the only constant is the board! Hang in there.

Guiseppi

Title: Re: The never ending cycle
Post by TxBasslady on Nov 3^rd, 2006, 8:00pm

Yes, it could be worse...but let's hope it gets better. ;;D

I've never taken Verapamil...but seems that others here have taken higher doses than 400. Maybe your doc will up it some more.

Sending lots of vibes your way...

Jean

Title: Re: The never ending cycle
Post by Jobette on Nov 3^rd, 2006, 8:33pm

Carl, I am so sorry that you are going through. I know that it doesn't help to here that they are going to go away. I know that the pain you are going through right now is something that only YOU know just how bad it is, because the pain is devouring YOU! :'(Sometimes it is not enough just to hear that things could be worse, because YOU know things could be worse :-/ because it is probably right around the corner, but what do you do? I'll tell you what to do, you have to just keep on trying to deal with it, and please JUST KNOW that you are not alone Dear. I am right beside you, I am trying to figure out the answers to the same questions that you and so many others are asking. :( We are just trying to deal with this pain. I don't WANT others to try and understand the pain that I (we) go through, because I get so tired of trying to expain what I don't understand myself :-/. I am sorry, I was trying to help you and I found myself in a rant :-/ I am under attack :o myself, Carl, just know you are not alone! Here's wishing you pain free times. Jobette

Title: Re: The never ending cycle
Post by bothofus on Nov 4^th, 2006, 3:20am

Thanks ya'll, that's why I come here, for encouragement
I'm just really tired of dealing with them this time
Good grief.......................
I was once told by a neuro in Austin that the older ya get the less likely ya are to have them. Ya reckon he meant 100 yrs old?
I'm beginning to think the verapamil has made them turn into a longer cycle. It seems like the beast is feeding on it until ya give him more than he can handle.
I know, I know, all you chronics are wondering what I'm crying about and I couldn't agree with ya'll more. To deal with these all year long, year after year, would definitely change my whole outlook on life and I don't know how ya'll do it, knowing your wearing a target on your head.
I'll shutup now and quit wallowing in self pity.
Carl

Title: Re: The never ending cycle
Post by kcopelin on Nov 4^th, 2006, 7:05am

Yo Carl! Self-pity is like "Now look what I've done, I've broken a finger nail" Please, brother, you are not doing self-pity. I am really getting suspicious of this verap myself-have been in cycle since Feb 05-and I REALLY wonder if the increased verap is doing this. I going for the seeds today, bro.
Hang in there!
kathy

Title: Re: The never ending cycle
Post by bothofus on Nov 4^th, 2006, 7:50am

Kathy, since feb. 05? Wouldn't that make you a chronic?
Were you episodic?

And Jobette, sorry to hear your getting hit as well. Together we can bear through this.

And Guiseppi, I guess there is something going on with the extended cycles with you and me and others. It has never been this long for me.

Thanks Annette, NovellRed, and Jean ya'll are truly life savers and compassionate CHer's. An asset to the community.

Thanks Ya'll,
Carl

Title: Re: The never ending cycle
Post by Jobette on Nov 4^th, 2006, 8:12am

Hey Carl, I hate that I lost it, but I guess we are all living on the edge and seeking some kind of relief. Self-pity can be a b&%$h, but it still hurts like the dickens. :P Feel better, Jobette

Title: Re: The never ending cycle
Post by bothofus on Nov 4^th, 2006, 8:38am

Jobette, ya didn't lose it. Ya still got it.
Carl

Title: Re: The never ending cycle
Post by kcopelin on Nov 4^th, 2006, 9:17am

Carl,
I was episodic for 24 years-now chronic. I suspect verap. RC seeds trial begins in @3.5 hours.
kathy

Title: Re: The never ending cycle
Post by bothofus on Nov 4^th, 2006, 10:13am

See, that's what I'm afraid of, becoming chronic.
UGGGGGGGGGGHHHHHHHHHH
Good luck with the seeds.
Carl

Title: Re: The never ending cycle
Post by sailpappy on Nov 4^th, 2006, 10:42am

::) ::) Carl,
I never had the problem of being Episodic, I have been Chronic since the begining, based on your short post that started this thread I think you already have the idea. The less you think about it, the less you punish yourself with self pity. believe me after 36+ years of being Chronic I have been here many times!
Verapaiml worked for me for about 6 months then even upping and upping the dosage never made it affective again.
Thank God for Cold water and the logic to realize that each attack will end eventually, just as it started.
The trick is maintaining your composure until the pain abates! good Luck! Pappy

PS. I hate having to run the heat, it triggers my attacks about as bad as anything can!

Title: Re: The never ending cycle
Post by kcopelin on Nov 4^th, 2006, 10:58am

Pappy's right on...once you accept that it is what it is you learn to deal wit it. I always thought chronic folks were like super heroes. We're not-well okay others are but I'm not. I just do what comes next.
ANd Pappy- I'm with you on the heat. I am holding off turning it on as long as my family will let me-have told them to wrap up in blankets if they're cold-they looked at me like I was some kind of cruel monster ::) which I'm not...ususally.
Kathy

Title: Re: The never ending cycle
Post by bothofus on Nov 5^th, 2006, 6:55am

Well I have been dealing with them, episodically, since the early eighties. Had some hits I remember when I was 17 in '76-'77. But they were episodic. I knew that after say 8-10 weeks they would go away. Not linger around, lounge around, make himself (the beast) at home, get comfortable and settled in. Longest episodic cycle I have ever had.
The upped verap has held them at bay for now. Used the bp machine yesterday while refilling the verap. BP was 143/89. Have never ever had high bp before.
I'm thinking that while shooting the verap gun at the beast, it backfired. I don't know, we'll see. If they are still here after Thanksgiving, I guess I'll make an appointment with a neuro.
Haven't used the heat but 1 time this year. South Central Texas is nice this time of year.
Carl

Title: Re: The never ending cycle
Post by Jobette on Nov 6^th, 2006, 12:55am

Pappy struck a nerve with me, I think that the heat can be an issue. Could the heat be making this cycle change? I brought a humidifier for my bedroom, but I can't tell right now if it is helping, because I have been under attack for a while now and I haven't took the time to think about it, if I could think.
Carl, Thanksgiving is 3 weeks away, as for me I am going to call tomorrow, if it comes, and see HOW SOON they can see ME. I feel like I am losing the fight right now, but I know that this too shall pass, but... If the headaches are over before I get in good, but if not I myself am tired of it for right now. CHRONIC ::)- If this condition is still such a mystery to the drs, how can we be really sure of a chronic, and who is a chronic. How can you really tell who is who when all are different. When you figure in the pain tolerance and total amount to pain and pain free days, and would you include shadows and snicky stabs that one can get. Hey, I could be chronic and not even know. I mean I really hate to think that this could get much worse, and I know that it could (without my O2). I am just thinking about my issues while trying to be a help to others. Usually when I try to be helpful to others I can also be a help to myself. Praying for pain free days!! :-*

Title: Re: The never ending cycle
Post by bothofus on Nov 6^th, 2006, 4:39am

Jobette, good luck with the doc and I hope you get in real soon.
As far as the chronic thing goes, I read on these boards that it means something like 1 month painfree or less out of a year. Something like that.
It is just that this cycle has lasted longer than any cycle I can remember EVER having.
Carl

Title: Re: The never ending cycle
Post by Jobette on Nov 13^th, 2006, 9:51am

That is the same thing I am saying about this cycle that I am in, and I guess I could be a tad depressed and maybe even feeling sorry for myself, but... oh well. I hope that you (Carl) are doing better or at least dealing with it. ;;D

Title: Re: The never ending cycle
Post by bothofus on Nov 13^th, 2006, 6:44pm

Jobette, good to hear from ya again. I'm back on the verapamil 80 mg - 5x. Seems to be doing the trick. No hits the last 2-3 days. Afraid to taper off of it for a while now. Guess I'll take it for another 2-3 weeks and then try again.

Did ya get in to see the doc? Don't get depressed, I check these boards 2 times a day. If ya post something I'll check ya out.
Carl

Title: Re: The never ending cycle
Post by Jobette on Nov 14^th, 2006, 9:42am

Got in to see the doc, and am on a prednizone taper and upped the verapamil. Had a RUFF weekend with pain and depression. I am wondering, could? the barametric pressure have ANYTHING to do with making these things worse, or have you ever given it a thought? Jobette :-/

Title: Re: The never ending cycle
Post by bothofus on Nov 14^th, 2006, 7:19pm

Yeah I've read on here that the barometric pressure can be a trigger. Here in Texas it goes up and down all the time.
Give the verapamil time and I think it will help ya. I just hated knowing I was going to still be taking something for a cycle that should have ended already.
Keep in touch,
Carl

Title: Re: The never ending cycle
Post by rickyshot on Nov 14^th, 2006, 7:45pm

Barametric pressure is a BIG trigger for episodics and some chronics. Trust me. Also triggers migraines.
Sorry you are having a rough time.

Title: Re: The never ending cycle
Post by Jobette on Nov 15^th, 2006, 8:41am

At least I'm not going through by myself. :P I look at it like this, at least that is one thing that we can put our finger on out of ALL this maddness. I can try to watch out for the barmetric pressure thing, it is all the other unknown stuff that seems to get you down. Wishing ALL pain free days. Hey I could be a mini meteoroligist, My head tells me that the pressure is out of wack! Hahahahaha. Got to laugh to keep from crying! Jobette

Title: Re: The never ending cycle
Post by bothofus on Nov 15^th, 2006, 6:48pm

Hopefully the verap will kick in and help ya. Keep us up to date. And keep your head out of the clouds.
;;D

Carl

Title: Re: The never ending cycle
Post by Jobette on Nov 15^th, 2006, 6:53pm

;;DHahahahahahahahahaha!!!!!!!

Title: Re: The never ending cycle
Post by alone5min on Nov 15^th, 2006, 11:37pm

on 11/14/06 at 09:42:45, Jobette wrote:

Had a RUFF weekend with pain and depression. I am wondering, could? Jobette :-/

It's been a while since I've posted although CH is on my mind daily even when I'm in remission (like I've been for 16 mos.) This site is my lifeline and know it is to others too.
All of those questions plague us. Are the meds working? Is it the weather? Is it the food? Was it the smell in the detergent aisle at the grocery store ? (it can happen ;;D)
I still haven't determined 'the cause' after 17 years. I just hope you find your niche' in what works for you as all of us are different. Mine is imitrex, cold wash clothe, sitting on floor in front of a fan , rocking. Sometimes at the 5 point stance. It isn't pretty. But it gets me through. I hope you find yours too.
Wishing you PFDAN soon.