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(Message started by: Lucyd on Dec 30th, 2002, 3:08pm)

Title: New here
Post by Lucyd on Dec 30th, 2002, 3:08pm
:)Hello everyone. This is my first post and I have a ton of questions.  A few weeks ago I had my first experience with cluster headaches and was "diagnosed".  After trying a few meds my doctor put me on Verapamil and started my on a three week schedule of Prednisone (decreasing every second day).  I have not had another "attack" since.  I feel that I am one of the lucky ones since I had to experience this pain for only a week before it was controlled.  Now my questions:  Is there any chance that this was a one time thing?  When can I expect them to come back if ever?  When can I eat chocolate or even think about taking a sip of wine again?  My doctor has suggested that in the next few days when I run out of prednisone I stop taking my verapamil too.  Has anyone out there had a similar experience?
Any feedback is appreciated.

Title: Re: New here
Post by Silver_Dolphins on Dec 30th, 2002, 3:28pm
Hi Lucy,

I am sorry that you had to find this site, but am glad you did.

Like you, I am new to CH, though I did have a visit from the beast three years ago, and then he came back and has been harrassing me for I think 18 weeks now.

The chances are that they will come back, but since you know what they are, you won't have to go through the hoops (misdiadnosis, etc) next time.

I wish I could answer all of your questions, but, being new to this game (which, BTW, has NO rules), I don't want to mislead you. However, there are many people that will be able to "hold your hand" and gide you through this horrible maze.

Again, welcome.

PFDAN

Silver Dolphins a/k/a Barry

Title: Re: New here
Post by Roxy on Dec 30th, 2002, 3:48pm
Hey Lucyd, † :)

Welcome to the family... †You're a lucky girl to get diagnosed that quick, and that your meds are working.

I can't help you on when or if they will return....don't have that experience. †You can probably take it to the bank that they will return though.....sorry.

I can't help you on the food or drinks either....mine come no matter what....so I eat and drink whatever.

Lots of good info here....read up, and go join OUCH.

Heres hoping you stay PF,

R

Title: Re: New here
Post by Lucyd on Dec 30th, 2002, 4:15pm
Thanks for the kind words.  I guess I must have a pretty good doctor and she works closely with a team of doctors at the clinic so she had some of their experiences to draw on.  My case, as she put it, was classic and without a doubt a cluster diagnosis.  I'm not looking forward to going through it again and the not knowing when will drive my bonkers I'm sure.  Positive thinking is my friend these days.
Thanks again. :)

Title: Re: New here
Post by domm on Dec 30th, 2002, 4:22pm
Lucy - if they are clusters, they will come back. Prednisone and Verapamil are the meds of choice for preventing CH. Pred stops it and as you taper off the pred, the Verapamil kicks in (it normally takes 5 to 7 days in your system to "take effect"). Since this is your first cycle, there is no way to know how long it would have lasted. I think the average cycle is 6 to 8 weeks long, but don't tell that to chronics. They go full time.
Remission is so varied, there is no way to tell. Each of us is different. I have 2 1/2 year remissions between cycles, and my cycles have been 8 weeks and 16 weeks. This last one got cut short with Verap at 6 weeks. I am still on Vera and plan to continue on it the rest of my life or until it stops working.

I would stay away from alcohol until you feel that you are out of cycle, but whats the problem with chocolate? That sound like a migraine trigger, and I haven't heard many CHers say chocolate triggers a cluster.

Anyway - welcome to the board and read, read, read. Visit the OUCH site and join up.
Pull up a chair
domm

Title: Re: New here
Post by Lucyd on Dec 30th, 2002, 4:27pm
:o I guess I've been reading too much, if there is such a thing, and I'm getting my information mixed up.  I don't remember where but I thought the two BIG no no triggers were alcohol and chocolate.  I don't remember where I read it but I'm going to go on a search to prove myself wrong now! Thanks for the hint.
Lucy

Title: Re: New here
Post by Charlie on Dec 30th, 2002, 4:32pm
Welcome Lucy. Always glad when someone who has had a bout with this horror finds us.  Whatever you do, don't plan on the things returning but if they do, let your doctor know immediately. It's not dangerous but damn painful.  It's a good idea to check in here as well.  There are things here that no doubt your doctors don't know.  You'll get some good replies and meet some strange but very helpful people. We have our fun here too.  8)

We have some good ideas that work for some. This is one that I used very successfully....as odd as it seems:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. Itís not a miracle, but itís been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on ďredirectingĒ blood circulation in order to retard flow to the head.  This is done by trying to ďsendĒ blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided.  If you let up or lose concentration, itís very hard to restart this process.  It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood.  Itís important to keep at it THROUGH the pain. This will be difficult, but itís the only way this technique will work. Donít let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, itís very hard to focus, but I think itís always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand




Title: Re: New here
Post by Drk^Angel on Dec 30th, 2002, 6:28pm
Welcome to the board!  Sorry that the beast freezes your cranium solid with liquid nitrogen, then shatters it into a million pieces with a baseball bat.  Good luck!

PFDAN............................................. Drk^Angel

Title: Re: New here
Post by suzy617 on Dec 30th, 2002, 6:43pm
Welcome to the board Lucy. Sorry the beast found you to pick on. I get mine every sept and oct for 21 years now. Only started imitrex this year and it worked great. Happy for you that you were diagnosed so early. Many of us go around in circles for years before proper meds are given. I could not drink beer in cycle but vodka I could so I guess everyone is different.
Wishing you a pain free new year,
suzy

Title: Re: New here
Post by ave on Dec 30th, 2002, 8:02pm
Sorry to have to welcome you, Suzy.

As to the pattern of clusters, there's no saying. Some get off lightly with 1or two attack episodes a year, for other it sort of flows ogether.

Alcohol is a trigger for most (but not for me and for a few other people I know). Monosodiumglutaminate, a choice ingredient of sauces, soups, ready made meals etc. is another trigger
Smoking - which many of us do - has not once been proven to be a trigger, though we smoke up a storm.

Verapamil is the preventative of choice, which means you have a good doc! Check out all the info here, ubder the butons and on the OUCH site and you will be much the wiser.

Title: Re: New here
Post by eyes_afire on Dec 30th, 2002, 8:15pm
Welcome Lucyd.  The 2 sure triggers for me are alcohol and sleep.  Since you have no past cluster headache history, whether you want to decrease your verapamil is up to you and your doc.  If you decrease the verapamil and start getting some of the neurological symptoms of CH (eye tearing, nasal congestion, etc) you may want to re-up it.  Except for trial-and-error, there's no way to tell whether you're at the end of a really short cycle or at the beginning of a really long one.  But it is good to hear that your meds are working.

Title: Re: †New here
Post by suzy617 on Dec 30th, 2002, 8:50pm

on 12/30/02 at 20:02:01, ave wrote:
Sorry to have to welcome you, Suzy.


Geez Ave, did you just notice me for the first time tonight?  ;D     LOL!

suzy


Title: Re: New here
Post by Jabeen on Dec 30th, 2002, 9:14pm
Hello and welcome- I am currently in my second cycle-but when I get them, they stay for about a year. So I am kind of chronic when they are here...but there were 5 years between cycles-who knows? I have no triggers...I get them or don't get them regardless of what I eat, drink, or how long I sleep.
It sucks!
Jabeen

Title: Re: New here
Post by 2late on Dec 30th, 2002, 9:34pm
welcome to the board Lucy i hope for your sake it is a 1-time thing,if not you found the right place!                                                                                                                                                                                                             ..........2late



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