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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Some tips from a 15 yr chronic sufferer
        
(Message started by: RalphCluserMan on Sep 15^th, 2005, 3:42pm)

Title: Some tips from a 15 yr chronic sufferer
Post by RalphCluserMan on Sep 15^th, 2005, 3:42pm

Forgive me if you all know this stuff. I just found the site and I haven't read through the whole board. I've suffered from severe clusters for 15 years and I've come up with a method for dealing with an attack that has literally saved my life. It may help some of you. Drugs never worked for me and I've tried just about all of them. 02 helped but was no cure and way too much of a hassle.

During an attack/ when you feel an attack coming on:

Get your heart rate up fast - then take your index finger and find the carotid artery in your neck on the side of the pain and press on it to restrict the blood flow into your eye (you'll feel it pulse if your heart rate is up). When you find the right spot - and apply the right pressure - you'll feel instant relief. The spot for me is usually a few inches below my jaw. Don't press too hard and keep letting up so you don't knock yourself out... Once you find the spot you'll know in seconds.

Eat something - anything force it in you. Get you blood to flow to your abdomen.

Sleep near an open window if you can. Fresh air seems to make a difference.

You know about the foods to avoid I assume. So I won't repeat them.

I hope this helps some of you...

Title: Re: Some tips from a 15 yr chronic sufferer
Post by Kris_in_SJ on Sep 15^th, 2005, 7:15pm

Hi Ralph,

Welcome to the board and the crazy but loveable family.

I'm so sorry for your long period of chronic suffering and glad you found some way to relieve your pain. We all have certain "tricks of the trade" so to speak.

I've tried the one you spoke of. Unfortunately, it only made my CHA's worse. Sometimes, pressing directly on the temporal artery brings temporary relief for me also, but sometimes makes it worse. Go figure ...

However, I would worry about newbies trying your method a little, since you're basically cutting off blood supply to half your brain. Could be a little dangerous unless you know exactly what to do and when. However, I'm glad it works for you.

PF Wishes,

Kris

Title: Re: Some tips from a 15 yr chronic sufferer
Post by Kate in Oz on Sep 15^th, 2005, 7:39pm

Hey Ralph,

I know what you're talkin' about. Many years ago I went to a chiropractor in the hope of some relief and he would do what you say and it worked!!! a couple of times :-/ I would go and see him in desperation - it was the only thing I'd found that could stop the pain.. I thought I'd found the 'cure'.... but then I too found it could make it worse or not work at all.

Having said all that I am really really happy that it works for you.

My cure now?? the 02 :)

PFDAN to you,

Kate

Title: Re: Some tips from a 15 yr chronic sufferer
Post by Frank_W on Sep 16^th, 2005, 6:52am

I've never heard of pressing the carotid artery. That's great! Next time I'm in cycle, I'll definitely give it a try. What foods do you avoid? Thank you.

Title: Re: Some tips from a 15 yr chronic sufferer
Post by RalphCluserMan on Sep 16^th, 2005, 8:36am

I avoid anything with MSG and free Glutamate - here is a good list I happened upon yesterday when I also happened to find this site:

http://www.msgtruth.org/avoid.htm

I also avoid salt. I haven't touched Alcohol since they started 15 years ago.

Years ago I saw a well known Doc who was the head of a well known HA Hospital in Boston. He said, "avoid anything that's cheap and tasty" - Good rule of thumb.

I also try to avoid overly dusty places without good airflow - having a constant supply of fresh air is very important which is why I keep the windows open in my bedroom (even in winter).

Title: Re: Some tips from a 15 yr chronic sufferer
Post by seasonalboomer on Sep 16^th, 2005, 8:46am

Shit ralph, if I followed that advice I'd put a serious crimp into my "quality of life", or at least my enjoyment of life. 8) Glad it works for you but my cycle will come anyway, and I always feel my reward for having to put up with these things is that I get to live it up a little when i'mk not in cycle. they'll have to pry the beer and salted panters nuts out of my cold dead hands......

[smiley=laugh.gif]

Title: Re: Some tips from a 15 yr chronic sufferer
Post by RalphCluserMan on Sep 16^th, 2005, 8:57am

You sound luck you are lucky seasonalboomer - one beer will trigger a CHA for me within 1 - 2 hours. Salted nuts (which can also contain MSG in addition to salt) can trigger one within 1 hour or not until I am about to reach REM sleep. Either way, for me, they are guaranteed triggers. For me, the real quality of life destroyer is intense pain and lack of sleep (sometimes for days).

Maybe in your case you can just avoid them during your cycle and shorten it and/or reduce their intensity. Something to think about...

Title: Re: Some tips from a 15 yr chronic sufferer
Post by seasonalboomer on Sep 16^th, 2005, 9:20am

lucky i am. my CH is a clearly delinieated jekyll & hyde experience. when i'm in cycle i avod all triggers (including yours), when I'm not I get to do all those bad things with no worries. lucky me.

you mentioned O2 as being a hassle, which i no longer agree with. I would think scouring every food label and clearing the house of all you've listed, leaving you with only non-processed oatmeal and bottled water to eat would be more of hassle. once you get O2, I find it to be pretty hassle free.

scott

Title: Re: Some tips from a 15 yr chronic sufferer
Post by RalphCluserMan on Sep 16^th, 2005, 12:43pm

Hassle for me. Big tank mask, falling asleep with it on, deliveries, cost, etc, and it didn't help fast enough or good enough for me.

Anyway, I found if you get your heart rate up with the O2 it works faster. (I used to jog in place with the mask on). That lead to just getting the heart rate up and pressing on the carotid which saved my life. Now, when I feel one coming on, (you know how you get very attuned to it) no matter where I am or what I'm doing I can control it and even prevent a full blown episode.

After a while you just know what to avoid for foods - cheap and tasty... I don't eat bland by any means and I don't totally avoid all processed foods. There are degrees to everything. Something are a guarantee (like beer or anything with a ton of MSG in it) and some things are borderline. After 15 years you figure it out.

That and good fresh air (I also found the Ionic Breeze air cleaner to be effective)....

Again, I am a chronic sufferer which means I can get them anytime any place and several time a day. Too often people like me wind up taking the permanent way out... Thank goodness I found a solution. It's not a 100% but it's not as horrific a condition as it once was.

Title: Re: Some tips from a 15 yr chronic sufferer
Post by rextangle on Sep 16^th, 2005, 1:37pm

Thank you Ralph and welcome to the board. I'm chronic too and your tips may help me too... I'll try pushing on my carotid tonight and see if that helps.
Take care,
Rex

Title: Re: Some tips from a 15 yr chronic sufferer
Post by sandie99 on Sep 16^th, 2005, 4:02pm

Hi Ralph!

Warm welcome to the family! :)
I'm glad you found us!

I'm a chronic too... My ch has been in remission since April (touch wood) and I reached that thanks to verpamil. But I like to survive without meds and if ch decides to come back one day, I'll give your tip a go.

Now, I checked your list of things you avoid. Basically I've been avoiding same things without realising it. I changed my eating habits about 16 months ago and it made a huge impact in my life in many ways. I believe that it had a say in sending ch into remission in my case, too.

I've never been much of a drinker, but I've noticed that even few sips of alcohol can trigger ch for me, so I avoid it all together. Some salty snacks trigger my ch under some conditions, but not always. Since I've never eaten them that much, it was easy to give them up as well.
Drinking cold water or taking a warm shower can trigger ch for me. So does chewing gum and some exotic smells. But when and why persicely, that one is a difficult question to reply as it doesn't happen every time.

Anyways, I wish that you stay around.

Wishing you lots of PF days,
Sanna :)

Title: Re: Some tips from a 15 yr chronic sufferer
Post by stevema on Oct 2^nd, 2005, 3:21pm

what i find interesting is how many of us come up with similar or identical strategies and pain aversion / abortion techniques. I also find that fresh air is desirable. I run to get heart rate up. I avoid msg and alcohol, completely.

Title: Re: Some tips from a 15 yr chronic sufferer
Post by brewcrew on Oct 2^nd, 2005, 4:20pm

on 09/16/05 at 08:36:43, RalphCluserMan wrote:

He said, "avoid anything that's cheap and tasty" - Good rule of thumb.

That's me to a tee - I go for the expensive, shi++y tasting stuff. ;;D