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Cluster Headache Help and Support >> Cluster Headache Specific >> A new record for length of cycle....
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Message started by B.Baer on Feb 22nd, 2009 at 6:58pm

Title: A new record for length of cycle....
Post by B.Baer on Feb 22nd, 2009 at 6:58pm
 Just need to vent, I am going into week 13, drum roll please....
an all time record.  >:( I went off my meds. about a week ago, Sansert and Topamax, I've seen no change for the better or worse. I cleared it with the Neuro., I'm sure he'll want to try something else.
  I never had a cycle as wierd as this, it's trying to change sides, I've always been left and now it hits occasionally on the right. The beast is always throwing curve balls and off speed stuff.
  I have no right to complain, the HA's have not once had me banging my head off the floor, as was the case in all of my previous cycles, just discomfort of some sort every day for three months broken up by periods of intense pain. Every time I turn my head I hear rice krispies popping  in my neck and I'll just shut up now and go back to dealing with it.
  Thanks for listening and we return you to your regular scheduled programing. O2 is my friend  :)

Title: Re: A new record for length of cycle....
Post by Marc on Feb 22nd, 2009 at 7:03pm
Man, that sucks. At least you have O2 to help keep them from hitting the top of the scale.  I know what you mean about the neck........

Tried Verapamil yet?

Title: Re: A new record for length of cycle....
Post by B.Baer on Feb 22nd, 2009 at 7:40pm
Marc,
    I went the Verapamil route as a prevent, didn't do much good. The Neuro. had me stay on a long time after the cycle was over. All it did was give me severe constipation resulting in internal hemorrhoids.Man this cluster stuff is fun huh.
    That reminds me, I've got to have them taken care of when I'm out of cycle. Just a laugh a min. I know that Verapamil helps a lot of people, just didn't do much for me.
     I've gone through a lot of the Level One meds. to no avail. Sansert seemed to help, but I have to order from Canada and the cycle was established by the time I got my script.
     I'll just keep on keep'n on..... What choice do we have. Maybe someday they'll find a cure for the beast and we can all reminisce about the bad old days.

Title: Re: A new record for length of cycle....
Post by RaceAce on Mar 4th, 2009 at 5:52pm
I am feeling your pain, i am into week 8. Twice every 24hrs with shadows in between.
The main attack strikes in the early hours, around 1-2 am.
Verapamil had no effect for me either, just taking sumatriptan ( imigran ) 100mg tabs now for relief.
This has been the longest cycle yet for me, and its starting to take its toll !

Title: Re: A new record for length of cycle....
Post by Guiseppi on Mar 4th, 2009 at 6:02pm
My last cycle went 8 months.....my previous record was 4 months. It sucked...but it did end. hang in there.

Joe

Title: Re: A new record for length of cycle....
Post by ClusterChuck on Mar 4th, 2009 at 6:06pm
That sucks that you both are into long cycles.  The beast LOVES to fu*k with our heads!

I stopped getting any results from any preventatives, also, so I just quit taking any.  I just use my buddy O2 to abort, when I do get hit.

There are a lot of us that don't take preventatives, and just use abortives, mostly oxygen.

Good luck!

Chuck

Title: Re: A new record for length of cycle....
Post by Linda_Howell on Mar 4th, 2009 at 6:13pm



    What dosage were you at on the Verapamil.  It may have been to low.  Also has your Doctor had you on Lithium?

Title: Re: A new record for length of cycle....
Post by B.Baer on Mar 4th, 2009 at 6:31pm
RaceAce, hang in there brother, your in the right place for support.
Joe, thanks you give me hope. I'll get through, always did and always will.
 Linda, I don't, at the moment ,remember the  Verapamil dose, since the  hemorrhoid problems I'm not in a big hurry to start that up again.  
  I just saw the Neuro. today, she asked if I minded a Neuro. student setting in, as we are so rare..... Ya' got a love it, with the odds of having CH, you'd at least think one of us should hit the lottery, wouldn't ya' ;D
 She has given me a script for Lithium for the first time, I don't know why they haven't tried this before, I had the blood tests and EKG today to establish my base line and should be on the Lithium by tomorrow, if she gets my base line back from the labs on time.
 I see some of us have had success with this, I hope it works. We all know, some meds. work for some people and don't for others, hell, I had success with one thing in a cycle and it didn't touch it the next.
I wonder sometimes if anything really works, or it's the natural progression of the cycle ending. Food for thought.

Thanks guys,
Keep on keepin' on ....
Baer

Title: Re: A new record for length of cycle....
Post by Guiseppi on Mar 4th, 2009 at 8:47pm
Crossing my fingers for you. Lithium at 1200 mg a day is my silver bullet, still. It blocks 70-80% of my attacks. Hoping and praying it works as well for you. Takes 10 or so days to reach therapeudic levels so be patient. And my goodness you pee a lot the first 2 weeks so drink lots more water. Hopefully doc already told you that. ;)

Joe

Title: Re: A new record for length of cycle....
Post by BarbaraD on Mar 6th, 2009 at 12:36pm
Let's see this cycle I'm in started in July of 97, but I know it's gonna end anytime now... ;)   Just kidding you.... Us chronics have to laugh or we'll get weird (except for Chuck and he's always weird).

Lithium has worked for a lot on here. I use Topamax and it's been my miracle drug since 99. Keeps most headaches at bay for the most part, but I depend on O2 as an abort. It's almost 100% (almost). Have a head-banger I can't get rid of occasionally, but for the most part I can keep control of them.

Hope your cycle ends soon. This year has been strange for a lot of Chers. Hang in there.

Hugs BD

Title: Re: A new record for length of cycle....
Post by B.Baer on Mar 6th, 2009 at 4:52pm
Joe and Barb I apperciate the support, this has been my wierdest cycle ever.

I swear it wants to swap sides, but hits the hardest on the left. I have noticed latley that I am uncomfortable almost 24 hours per day. Pressure on the right, minor bloodshot right eye etc. Only seems to let go at night for two hours at a time, thats when I get the full blown on the left.

Thank god the night time hits I can calm down with 8 or 10 mins. of O2, and none have gone full blown exterme. Makes for a restless maddening nigth, starts to playing on your nerves if you know what I mean......

But none of you folks would understand that .......Yeah Right  :D
I'm trying to keep a grip on things and pray that cycle breaks soon.

Thanks a million guys...
Baer

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