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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> New to this horror and a few questions
        
(Message started by: daniel_tn on Aug 6^th, 2005, 4:04pm)

Title: New to this horror and a few questions
Post by daniel_tn on Aug 6^th, 2005, 4:04pm

:o
Hello,

My wife and I realized last night at 4 in the morning that I probably have cluster headaches. I've been awakened from a sound sleep at the same time fairly often for the last month and a half with a stunning savage pain in my head.

These headaches are unlike any I've ever had in my life.

After reading your site and others, I have all the symptoms of CH. Tonight, if another one comes, and I suppose the mofo will come, I will go to the ER and get a CAT scan.

A month and a half ago, I cut my alcohol drinking down by about 90%. Within 5 days, these headahces began.
Could this have triggered my CH?

Also, should I be drinking a little bit to prevent these or minimize these. Should I abstain completely? What is the relationship between these brutal headaches and moderate alcohol consumption? I understand that I not to drink or smoke during an attack, but what about when I'm not afflicted?

The idea that I will have these headaches for the rest of my life scares the hell out of me. It is the worst pain I've ever experienced.

I am so glad to have found this site, and so glad to know that there is such a wealth of knowledge, if not relief, out there.

I look forward to your replies and thank you in advance.

-daniel :-/

Title: Re: New to this horror and a few questions
Post by Limey on Aug 6^th, 2005, 4:17pm

Alcohol makes cluster headaches worse, much worse.
Most sufferers are episodial and you'll reach the end of your cycle soon. Hang on in there and stay off the alcohol completely until your cycle is over. Just one single drink can trigger an attack.

Title: Re: New to this horror and a few questions
Post by yikes-another-one on Aug 6^th, 2005, 4:23pm

>:(

Not fair that you have to suffer.
not fair any of us have to,

but you fight on with what you get.

Keep reading arond on the site,
you will find lots of info about
abortive medicines, and about even prevenatives.

This pain comes and goes.
It could be worse.
We could be stuck in a coma
or stuck in a wheelchair....

right now, we are just stuck in the head.

SO, leanr all you can, and fight the monster.
Don't let him steal your life away.

Get good and mad and then,
chant or dance or have a red bull
or meditate....
whatever it takes.

Then, when the beast retreats to who cares where,
pick up the rest of your life and live on...
doing your best to enjoy all the pain free moments.

If the pain comes back, you do what you need to
and then, when it retreats again....
go on.

That's what we do.
That's all we can do.

Engery...it flies out the window.
Memory...well, I guess that's why god gave us paper and pens.
Make room for what's most important,
and push off anything you can until you feel better.

Figh on, brave soldiers.
Do what you can....and enjoy every minute.

(if you read chockey's posts, you may find more encouragement, too.)

God bless us, with more pain free days and nights.

Title: Re: New to this horror and a few questions
Post by unsolved1 on Aug 6^th, 2005, 4:24pm

Hi Daniel and welcome to the madhouse. Sorry you had to come looking for us but glad you found us.

(1) Get a neuro and a diagnosis

Read, read, read !! Ask lots of questions

http://www.brightok.net/~mnjday/chtherapy.pdf

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Most clusterheads prefer O2 or Imitrex injections.

Goodluck,
UNsolved

Title: Re: New to this horror and a few questions
Post by Charlie on Aug 6^th, 2005, 5:17pm

Welcome aboard but I'm sorry you are dealing with this horror.

It's not etched in stone that these will last the rest of your life. I'm 58 and mine have been gone for 13 years. We have some evidence that there may be an age factor in that we know that there are some who feel that age is the reason they become less of a problem. It's not at all scientific but it's interesting.

Here is a technique that worked very well for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: New to this horror and a few questions
Post by bnfreeman on Aug 6^th, 2005, 5:21pm

Hi Daniel,

Before I knew I had cluster headaches, I found out really fast that if I had a margarita at the mexican restraunt that I love, I was doomed. Lightning would strike me there. And yes, it is some of the worst pains you experience.

But, we all have each other. You're not crazy, we all know how it feels. As much as it may suck right now, you probably need to stay away from alcohol. At least until you know if your episodic. Then when your cycle ends, you can have a drink. ;)

Find a good doc, ASAP! Good luck to you.

Brandi

Title: Re: New to this horror and a few questions
Post by burnt-toast on Aug 6^th, 2005, 7:48pm

on 08/06/05 at 16:04:05, daniel_tn wrote:

It is possible that you have clusters but please go through the necessary testing and neurology exam(s) to rule out other causes.

In the event that you have clusters drinking during an active cycle is usually bad news. Reducing alcohol comsumption is most likely helping - not causing clusters. But you should stop entirely and see if your condition improves.

Most sufferers trigger attacks with alcohol but this is not a stone solid rule - some drink without triggering headaches. Such is the nature of this nightmare.

The bad new is that the condition is usually lifelong and the good news is that most suffers are episodic. If this is your first cycle you will have some learning to do as to how your CHs will settle into a cycle. Long remissions with short active cycles is not uncommon.

Keep a good journal, read and understand CH and how you may be affected, pepare for your appointment with a good Doc. and get a good diagnosis.

Good luck on your journey

Tom

Title: Re: New to this horror and a few questions
Post by LasVegas on Aug 6^th, 2005, 11:29pm

on 08/06/05 at 19:48:02, burnt-toast wrote:

The bad new is that the condition is usually lifelong and the good news is that most suffers are episodic. If this is your first cycle you will have some learning to do as to how your CHs will settle into a cycle. Long remissions with short active cycles is not uncommon.

Keep a good journal, read and understand CH and how you may be affected, pepare for your appointment with a good Doc. and get a good diagnosis.

Good luck on your journey

Tom

Could not have wrote it any better. We all can relate first-hand and understand what you may be going through, please feel free to ask as many questions as you'd like and take advantage of the wealth of information that is on this site. Gregg in Las Vegas

Title: Re: New to this horror and a few questions
Post by sandie99 on Aug 7^th, 2005, 3:01am

Daniel,

ch & alcohol don't go well together... A sip of champagne at a friend's graduation party got me nearly attack. Can't imagine what would have happened if I had had the whole glass...

Anyways, I hope that you don't have ch. It's a beast you don't want to have... If you haven't seen a neurologist yet, book a time to see one soon so you can be sure. And read all the info available here. Lots of info about meds & treatments, use it. If you have questions, don't be afraid to ask. :)

Best wishes,
Sanna