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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Newbie Questions
        
(Message started by: Eb on Aug 19^th, 2003, 2:07pm)

Title: Newbie Questions
Post by Eb on Aug 19^th, 2003, 2:07pm

Hello all...

A little about myself, I'm 38, male, and relatively new to the CH experience having been diagnosed about 6 months ago. I've had migraines since childhood and thankfully the severity had decreased dramatically in recent years to just the visual "aura" before the headache w/ just minor pain following.

Early this year I started getting a different kind of headache, with much different pain. I described the pain, the tearing eye and the runny nose to my doctor, and was then awarded the title of ClusterHead!

I've taken two cycles of prednisone--stopped the CHs in their tracks (until the last few days), verapamil--started at 90mg, went to 360mg (did nothing), and have just recently started Depakote (500mg)--too early to tell. I'm taking Oxygen and Imitrex injections now to stop the headaches when they hit.

My questions are these: (1) Is it too early to tell if I'm episodic or chronic? I've had these headaches now for 6 months, and they seem to be increasing in frequency. They started out coming once every other day, but now it's averaging 3-4 hits a days (mostly at night). (2) For those that are episodic, does the frequency increase at some point of the cycle (like in the middle or towards the end) or does the frequency stay the same throughout? (3) I've tried sleeping pills the past few nights just trying to get some uninterrupted sleep, which I haven't had since my last cycle of prednisone. I know sleeping pills are not good long-term, is there anything else that has worked for others? (I guess the answer is another "preventative").

I've spent the past few months reading the messageboard here and doing as much research as possible. Just wanted to thank you ALL for your comments/suggestions. It's been a great relief knowing I'm not alone...

Thanks,
Eb

Title: Re: Newbie Questions
Post by Cooked Brain on Aug 19^th, 2003, 2:14pm

Hi Eb,

sorry you have to be here. Don't hope you are a chronic, but a 6 month cycle still increasing seems VERY long to me? The past years I had very short cycles, 1 or two weeks, this is the first long period for me too since june, currently on 360 verapamil which seems to do fine, but I can tell the cycle is ending because I feel the attacks coming less frequent.

what is next If Depatoke doesn't work?

hope you find relief very soon

PFDAN

Title: Re: Newbie Questions
Post by Bob_Johnson on Aug 19^th, 2003, 2:50pm

Unfortunately, Cluster history is littered with stories of having to try several preventive meds and adjusting doses to find one which is effective. Then, for some folks, they stop being effective after a period of success and you start the trials over again.

This is not to discourage you but to say that if this turns out to be your experience: you are not alone; not your fault or even that of your doc. (What you want is a doc who knows the literature since changes in meds are coming along regularly.)

Title: Re: Newbie Questions
Post by BillyJ. on Aug 19^th, 2003, 3:14pm

Hi Eb,Welcome aboard!
Dramamine and benadryl are reported to be effective for
some here to help with sleep by avoiding the REM stage
of sleep.

Verapamil does nothing for ME at a dose lower than 480
per day,and is not much help until I get as high as 960
mlg/day.HOWEVER not everyone responds to meds in
the same way.You may not be able to take that high a
dose because of heart and blood pressure.This is
something you will have to ask your doctor about.
I think the only thing you can say for sure about
this beast is that he is unpredictable.Frequency and
cycle length are always changing for many of us here.
Stick around and feel free to vent,ask questions,and
offer support.As with any 'family' there will always be
disagreements and quarels,but they are FAR outwieghed
by the support,careing,and understanding that you have
found here.
PF2U,
Billy

Title: Re: Newbie Questions
Post by Eb on Aug 19^th, 2003, 3:44pm

Thanks for the responses so far....I will look into the Dramamine and Benadryl.

I'm a smoker and I used to drink occasionally, but gave up drinking my beer for the past few months after figuring out it was a trigger (from this website and from a log I kept). Now I'm avoiding chocolate (DAMN!). I quit smoking for a week, had a day and a half PF, but the headaches came back...I'm trying to go down the list of triggers one at a time in the hopes at least it'll reduce the severity/frequency of the headaches...guess we'll see.

Any other suggestions/comments would be greatly appreciated...

Thanks again!
Eb

Title: Re: Newbie Questions
Post by Karla on Aug 19^th, 2003, 6:28pm

You will find that other than alcohol cluster headaches really do not have triggers like migraines do. They are different in that way. CH just occurr for no reason.

Title: Re: Newbie Questions
Post by Cooked Brain on Aug 19^th, 2003, 6:48pm

Quote:

CH just occur for no reason

Karla,

as you can read in the general area many people have other triggers than just alcohol. As most hits occur at night it is generally assumed the biological clock plays part in CH. I can second that as season changes and jet-lags do trigger attacks for me even when I am not in a cycle.

PFDAN

Title: Re: Newbie Questions
Post by kbbogo1 on Aug 21^st, 2003, 9:16am

Hi Eb, Welcome!

I have migraines and clusters, too. My migraines usually lessen as a cluster cycle begins. My cluster cycles vary, but usually last from 6 - 16 weeks, but usually last 12 weeks. They do peak in pain and frequency in the middle/toward the end of a cycle for me. I agree with Cooked Brain, 6 months sounds like a long time for episodic. (??)
The verapamil works for me, doesn't take the cycle or the pain away, just lessens the pain greatly to where I can tolerate it without an injection every couple of hours.
I have tried the sleeping pills and perscription Soma when I had a really bad cycle. It helped me get to sleep, especially since I was anxious about going to sleep in fear of the beast. But, I would still wake up when the pain started. Let us know if you try the dramamine/benadryl and it works. I sure hope you find something that will work for you.

Kim B

Title: Re: Newbie Questions
Post by Eb on Aug 21^st, 2003, 9:48am

Thx Kim...I'll let you all know how the Benadryl / Dramamine works...

I think next time I talk w/ the doc I'm gonna ask for another burst of Prednisone while starting Verapamil again at a higher dose and keeping on the Depakote....it sounds ridiculous to me while typing this~~never been a fan of medications and here I am, rattling them off....

Thx again everyone!

Eb

Title: Re: Newbie Questions
Post by Linda T on Aug 21^st, 2003, 7:01pm

Hi Eb and don't despair. I know 6 months is a long time but that doesn't necessary mean you have turned chronic. I think it's still too early to tell.

My last cycle started at 1 hit a nite. That lasted about 5 weeks. Then the s**t hit the fan and the hits started coming 3 times per nite, then 4 times per day until I was up to about 8 hits during the day and nite. That lasted 4 months. Then I just shadowed constantly. That lasted another year. Now I am completely pf and have been for about 2 months. I have not taken any meds since April 02. Believe me, I was sure that I had turned chronic. I guess what I am trying to say is that ch is too unpredictable to tell. I know it's hard but you need to keep the faith and believe that "this too shall pass." It will. You gotta believe.

Wishing you luck and PFDAN always, Linda T

Title: Re: Newbie Questions
Post by Prense on Aug 22^nd, 2003, 8:47pm

If I am not mistaken, chronic is 1 year with no more than 30 days remission. Of course, that is just a "label" and means nothing more than you can expect to get hit pretty much anytime. My attacks seem to have no pattern (frequency, time of day, etc) at all. They just come and go. I was diagnosed 2 years ago, but I have been dealing with this chronically for 10 years now. As far as sleep goes, some people have reported success with melatonin (no idea on dosage) as well.

Chris

Title: Re: Newbie Questions
Post by Eb on Aug 23^rd, 2003, 4:28am

Well, I just ended two days w/ no major headaches, which was the longest period PF I've had in awhile w/o prednisone. Was awaken twice tonight, first one oxygen took care of, second one needed some Imitrex to squelch. And now I'm staying up. Still on Depakote (500mg), and the only thing I did differently was having a nice, big chocolate shake with dinner~~got hit about 90 minutes later and then twice after going to sleep at midnight.

Thx Linda and Prense for your replies. My headaches lately seem to be following a pattern of sorts~~once in the morning around 8:00am, one in the afternoon, and then roughly every 2 hours after falling asleep. The morning and afternoon hits are not as consistent as the night time hits.

Before this recent period, they were primarily hitting after having a beer (or two) and again after going to sleep.

Well I enjoyed the past few days, guess we'll see what the weekend brings...lol.

Wishing everyone PFDAN,
Eb

Title: Re: Newbie Questions
Post by Svenn on Aug 23^rd, 2003, 4:37am

Cant add so much more here then Whats already been said.
1 trigger that some is forgetting about is oilbased paint and that kind of stuff.
Thats a HUGE trigger for us
Other then that i`ll add my coctail for cluster

Verapamil Retard 120mgX5-7/daily during cycle 3 weeks after last hit tapering down with 1 verap every 3/4 days until you are on 1 a day.1 a day for another 2 weeks you can decide to quit the verap or take 1 a day.Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 70-60-50-40-30-20-10-5mg every 3/4 day
This work fine for me

The very best from Svenn

Title: Re: Newbie Questions
Post by UAL_FlyGal on Aug 25^th, 2003, 12:17pm

Hello,
I'm a newbie to this site but not to CH's. :'(
I'm soooo happy I found this support board. I thought I was going nutzzz!!

Thanks for being here! :)

Title: Re: Newbie Questions
Post by neetnut on Sep 2^nd, 2003, 7:31pm

I have just recently been diagnosed with having cluster headaches. What a relief to find out what I have at least has a name. I have been going through this pain for the past 18 years being told it is Sinus Related problems. After pleading with the doctor to help me end this pain and keeping a diary of the attacks, he finally added a name to it. He gave me Inderal 60mg to try twice a day, NO HELP there. Keeping me on the Inderal and adding Imitrex 6mg Injections seems to have helped some. I am still having attacks, but the injections are a God Send! I just feel better somehow knowing that I am not alone in this, that finally others out there understand how I suffer! Thank You for this support board :)