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        Cluster Headache Help and Support >> Cluster Headache Specific >> Change in CH Patterns 
        
(Message started by: FREDRICKS on Mar 4^th, 2008, 6:06am)

Title: Change in CH Patterns
Post by FREDRICKS on Mar 4^th, 2008, 6:06am

Hi All

can patterns change just like that, i have been regular for 6 cycles on the dot and since being put on Topamax have seen a different cycle form with the number of attacks reducing but attacks coming at different times in the day/night

Is this normal?????

Can this also extend my cycle?? as the Topamax is making me feel exhausted after an attack or Imitrex jab

thanks always

Title: Re: Change in CH Patterns
Post by BarbaraD on Mar 4^th, 2008, 8:23am

Fred,

Don't know what dose you're on with the topamax, but take it at night before bed and the exhaustion probably won't be there (unless it's caused from the headache).

And yes, patterns can change (and usually do just to confuse you). CH is NOT predictible. Some here know exactly when they're going to get hit -- I never do. When the demon decides to visit he will and I've learned over the years to just be prepared when that happens. I've never had a set pattern when I was episodic or since I went chronic. It just happens when it happens.

Try melatonin at night before bed (12-15mg) and see if that helps you get thru the night. It works for a lot of us. I very seldom get a night hit since starting it years ago. Between that and the topamax (I take 100mg at night) I get the rest during the night so I'm in shape to fight Mr. D during the day.

Hugs BD

Title: Re: Change in CH Patterns
Post by Bob_Johnson on Mar 4^th, 2008, 9:15am

All the talk about regular cycles never got my interest. Over 30-years my bursts would come and go on some private rhythm which the gods never bother to tell me about.

The only med which I have seen in the literature associated with changes in cycles/frequency is Imitrex and that effect does not seem to be a common reaction.

Title: Re: Change in CH Patterns
Post by Guiseppi on Mar 4^th, 2008, 9:57am

What Bob said! My first few years were all over the board, then from 25-40 years old, you could set the atomic clock by my cycle starts and the headche hits themselves. As I snow plow towards 50, they're all over the board again. Never tried the topomax so I'm no help there. Enjoy the pain free time, always have your weapons at the ready to do battle!

Wishing you peace and a short cycle!

Guiseppi

Title: Re: Change in CH Patterns
Post by sandie99 on Mar 4^th, 2008, 10:03am

My ch surely has changed its patterns over these few ch years I have under my belt. Only my first one the hits came like clockwork... I kinda miss that... :-X

Sanna

Title: Re: Change in CH Patterns
Post by kevmd on Mar 4^th, 2008, 4:07pm

alot of the same things everyone else said. I use to have a schedule. I knew if I made it to noon, then I wasn't getting hit that day. Now, there is no rhyme or reason. Can come morning, noon, or night, get them from sleeping or not sleeping. Just have to be prepared any time of day. The only constant is knowing they will eventually come. Fun stuff, huh

Title: Re: Change in CH Patterns
Post by Annette on Mar 4^th, 2008, 10:16pm

My husband experienced the same thing you described but with neurontin, not topamax. We asked the neurologist the same question and he told us that since CH by nature changes all the time, its virtually impossible to tell at first whether its the meds working or is it just the beast morphing.

If you take topamax for a couple of cycles and it gives you the same result each time, only then can you say the change is due to the meds. Even, its hard because the response to a particular med can change with time and without warning too.

From our experience, we learnt to stop worrying about every little change. Sure, notice them and wonder and observe and record them down but if you cant find an easy answer, file it away and just carry on with life. Excessive worrying and brooding over things may cause your body to release stress hormones which will make things worse, not better.

I am glad to hear the number of attack is reducing. Enjoy the painfree time and I hope the cycle ends real soon.

All the best.

Title: Re: Change in CH Patterns
Post by MJ on Mar 5^th, 2008, 1:43am

For the first 20 years, using a lot of meds, for me the hits were all over the place and I had very little control.

10 years following med free the hits were "allmost' predictable every 2 hours they would start and predictably maybe a 3-4 hour break in the evenings. I got nice clean short breaks between the hits too.

For the first ten years cycles were the same on an annual basis..
Since then however I have not been one to have a standardized cycle though so yes patterns can and do change.

Title: Re: Change in CH Patterns
Post by beachmusic on Mar 5^th, 2008, 5:12am

You could set a clock to mine. Always at 7pm. Then it shifted to 7 and 9 pm. Then it went to a 1 in the afternoon hit and still the evening hit. Started topomax 175mg in the evening. I too am exhausted, not sleeping and my hits are all over the place. Noon, 4pm, 6pm, 8pm, etc. and whatever please don't nap!!!! No rhyme or rhythm. I guess a lot of this is due to not sleeping well at night and being sleep deprived in the day so I get slammed all the time. This will pass I hope as I get used to the meds. I read that it was important to take topomax with food (hard to do when all food grosses me out) but guess it is important. Good luck.