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        Cluster Headache Help and Support >> Cluster Headache Specific >> radical change in cycle
        
(Message started by: Markaf on Mar 26^th, 2006, 9:50am)

Title: radical change in cycle
Post by Markaf on Mar 26^th, 2006, 9:50am

I have been living with these "headaches"for about 12 years. The cycles allmost allways start around December and last a few months. I would generaly get my Ch after falling asleep then through out the night. This cycle started in March and to my suprise the CH are hitting me during the day and/or while I'm awake. My Neurologist Started me on a whole new round of med's and of course the Imitrex injectables as the rescue med. He also mentioned to me that this could be a sign of them going chronic. Anybody else going through or have been through this??

Title: Re: radical change in cycle
Post by rapunzel on Mar 26^th, 2006, 11:47am

mine were always during the day- then this time around, they were only while I was asleep.
However, i am going on five weeks this time around- and for the past week or so, I have begun getting them during the day also. How nice, huh? Not safe in the dark of night, or in the middle of the day.
This morning I had to make a decision. I have three Imitrex pills left (100mg). I had to decide whether I should take one this morning as the beast was waking up, but then I wouldnt have enough left for the nights before my neuro appt on Wednesday. I decided to suffer without any support this morning .
I have decided that the only pattern is that they have no pattern.

good luck n I hope you have pfd soon.

Kim

Title: Re: radical change in cycle
Post by chewy on Mar 26^th, 2006, 7:54pm

Quote:

He also mentioned to me that this could be a sign of them going chronic.

And to what medical study does he attribute that bit of astounding medical opinion to?

Title: Re: radical change in cycle
Post by Markaf on Mar 26^th, 2006, 9:06pm

Most probably his 20 plus years as a practicing Neurologist

Title: Re: radical change in cycle
Post by Skyhawk5 on Mar 26^th, 2006, 9:27pm

I'm new here but have had CH for 18 yrs episodic. My cycles have switched twice. The majority in the fall around Nov. 1 thru Feb. or March. After getting Shingles in 2003 I switched to Spring/Summer.

It is not uncommon to have our cycles change but is quite upsetting when it happens to us.

Your Dr.'s opinion about Chronic is just that an opinion.
I wish you all the luck you need to ride the Beast out no matter when it comes knocking. BTW mine have always been night and day. Mostly night. Skyhawk5

Title: Re: radical change in cycle
Post by Guiseppi on Mar 26^th, 2006, 9:59pm

I've been episodic for 26 years. I was like you and never had the wake up calls. My late twenties to early 30's the bugger would start waking me out of a sound sleep about 90 minutes after I went to bed. I've been lucky to this point, I'm 46, and I haven't gone chronic yet. Still a 2x a year episodic. I'm hoping you'll be lucky...(what a term with CH huh???)....and you'll stay episodic. I don't know about you but going chronic would bum me out!

Guiseppi

Title: Re: radical change in cycle
Post by Bob_Johnson on Mar 27^th, 2006, 7:25am

Unfortunately, there is so little really known about the mechanisms behind CH that trying to explain changes in our experience is doomed to frustration. All I can say is that the literature is full of changes, failed treatments, and dead end hypotheses. About the best we can do is to use the approaches/meds which our personal experience says works for us--and be open to running trials on different treatments, as needed.

As for critics of your doc:

"Passion isn't a synonym for truth. Must I respect a woman who believes that oysters sing?" --Lewis Lapham (Editor of HARPER'S.)

Title: Re: radical change in cycle
Post by Markaf on Mar 27^th, 2006, 8:43am

Thanks for the kind words and thoughts everyone. This is the first time that I ever had CH during the daylight hours and it is a little scary. It is keeping me home, allready missed a week of work. As for my Doctors comment, he only said it (COULD) go chronic, not that they will. I respect him for being bold enough to worry with me about all possible out comes.
Thanks,
Mark

Title: Re: radical change in cycle
Post by Kevin_M on Mar 27^th, 2006, 9:10am

on 03/26/06 at 09:50:45, Markaf wrote:

to my suprise the CH are hitting me during the day and/or while I'm awake.

He also mentioned to me that this could be a sign of them going chronic. Anybody else going through or have been through this??

The night-time hits seemed to come more frequent for me within that seven hour period of attempted sleep but the rest of the 24 always had three, four or more hits in the day too, right from the start and I continued to have episodic cycles over a ten year span, but not at consistent or predictable times of the year.

on 03/26/06 at 09:50:45, Markaf wrote:

My Neurologist Started me on a whole new round of med's and of course the Imitrex injectables as the rescue med.

Have you used preventatives in the past and what had to be changed, because...

on 03/27/06 at 08:43:31, Markaf wrote:

This is the first time that I ever had CH during the daylight hours and it is a little scary. It is keeping me home, allready missed a week of work.

You mention Imitrex but missing a week of work, it seems the abortive prescribed was not in sufficient quantity or the preventative has not been effective yet. March is almost over, some frequency should diminish with an effective preventative, this can go on for months and I don't think it's practical to miss that much time. Give feedback to your doctor about what's not working and see what he says. Learn to manage the day hits too.

And if you are home, oxygen is an excellent abortive, saving the trex for work.

Title: Re: radical change in cycle
Post by thenucman on Mar 27^th, 2006, 4:46pm

Ditto to what Kevin posted about the O2. Its very cost effective as well. As stated in another post somewhere on the forum, the cost of one month of O2 is much less than the cost of one shot of Imitrex.
Of course, only if O2 works for you.

Dave

Title: Re: radical change in cycle
Post by Markaf on Mar 29^th, 2006, 1:09am

Yes I have tried O2, it has not helped to date. One of the new meds I am trying is Lyrica. He also put me on beta blockers. I am already on calcium blockers. As I'm writing this I am recovering from a hard hit from the beast.

Thanks for the info.
Mark

Title: Re: radical change in cycle
Post by neetnut on Mar 29^th, 2006, 1:45am

Must be that time of year when we all start to suffer in March. Mine too have gotten worse this March. I try real hard not to go for the shots to rescue me, but I have gone through six shots in the last 4 days. Have an appointment on Wed. at Nuro, we are discussing more options. I have a Great Nuro he is taking time during his lunch to talk to me. Hoping to relief soon. Awaken tonight with a bad one after being sound asleep for an hour or so.

Anita

Title: Re: radical change in cycle
Post by Markaf on Mar 29^th, 2006, 8:43am

I know what your going thru, sorry. Hope your Dr. helps.

Mark

Title: Re: radical change in cycle
Post by thenucman on Mar 29^th, 2006, 2:09pm

I have found that unfortunately, if I don't catch the beast in time, there isn't much that CAN help. The sooner you hit him with the O2, the better. Pretty tough when you are asleep, but pain is a great teacher, is it not?

Title: Re: radical change in cycle
Post by floridian on Mar 29^th, 2006, 6:14pm

Markaf,

I'm curious as to whether this change occured before or after starting imitrex.

Title: Re: radical change in cycle
Post by Kevin_M on Mar 29^th, 2006, 7:20pm

on 03/29/06 at 01:09:25, Markaf wrote:

Yes I have tried O2, it has not helped to date.

An oxygen set up is best effective at a high flow like 12-15/Lpm for 10 to 15 minutes using a non-rebreather mask. Just want to make sure you gave it a try like that. Oxygen won't completely get rid of some hits but will keep it down enough while a n/s trex gets the time it needs. Before I had O₂ I'd use icepaks while waiting.

Quote:

One of the new meds I am trying is Lyrica. He also put me on beta blockers. I am already on calcium blockers. As I'm writing this I am recovering from a hard hit from the beast.

So far the preventative search does not seem to help much unless it needs more time. Verapamil can take two weeks, a short pred taper assists some during that time until an effective amount of verap is gradually added. The amount needed can vary and some docs will alter the dosage upwards to see if it will work. I didn't find any relief until getting to 480-600, but I had to let him know. I'm not familiar with using other meds.

Hope something begins to work or this is a short cycle for you.

Title: Re: radical change in cycle
Post by Markaf on Mar 29^th, 2006, 7:38pm

floridian,
There is no link to the Imitrex, I only use it as a rescue med. By th way I am a Floridian also. Yes I have tried O2 at the rates you described, it rarely helped. Thanks for the thoughts.
Mark