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        Daily Chat >> General Posts >> First time In my life of CH I'm scared
        
(Message started by: Braindead on Mar 18^th, 2008, 10:21pm)

Title: First time In my life of CH I'm scared
Post by Braindead on Mar 18^th, 2008, 10:21pm

Well let me just say that for years (15) I have John Wayned my attacks with the son abiatch. It has switched side's defied all meds and is kicking my arse with both feet.

Seems I have done it all, alone, with doc's, now again with nuero's. Last year was a 7 month deal of torture, a rel-pax every night.

Now I am on my third month this year.

The docs are saying you can’t keep eating those every day. So I had a steroid burst, dam I felt jacked up, but felt good for 5 days, then they came back more pissed off.

Another round of steroids (did not even touch it this time, Lithium for 2.5 weeks I made so much juice in my jowls trying to keep that crap in my gut and it did nothing but move my cluster to the front of my head -HOW COULD IT BE BUT WORSE PAIN?

I even did acupuncture it worked a few years back or was it luck? This year get this, I went in again for the needles and I swear it moved the cluster to broad daylight at the exact time I had the needles put in, ( 5 p.m.) until it progressively moved back to 1:52 a.m on the dot as usual.

Ok so now I am on Varapamil I have 240mg of junk in me for only one day, bad migraine today had to eat a rel pax.

I am SO DESPERATE I just can’t say how horrible I feel. I am now 50 and find my wonderful life so bad I just don’t know what to do anymore. I am a pathetic lump that can hardly do anything but suffer. I can’t do this for another few decades.

Now I am scared all the drugs are going to trash my insides, next I will be inline for organs WTF I’m junk!!! I would eat a rats nut sack if I thought it would help. God save everyone that has these. There is so much suffering and stuff I have tried between these lines to stop this crap, but there is just is not enough paper to post it all.

Cry baby over and out,

Denis

Title: Re: First time In my life of CH I'm scared
Post by DonnaH_again on Mar 18^th, 2008, 10:49pm

Look for private message.

Title: Re: First time In my life of CH I'm scared
Post by BlueMeanie on Mar 18^th, 2008, 11:08pm

Denis, sorry to hear they are back. Don't worry about the cry baby stuff. These things wil knock ANYONE down. Have you tried 02 to abort attacks ? Check the oxygen info to the left of this screen. Have you used Imitrex shots to abort attacks ? I quit doing all meds except for the 02 & Trex years ago. I can abort them fairly easy with those options. The only problem is they come back more times a day. Hang in there and read up on as much info as you can here. Everyone is a little different.... there are lots of options. Hope this cycle ends soon for you.

Title: Re: First time In my life of CH I'm scared
Post by Charlie on Mar 18^th, 2008, 11:25pm

Yes. I didn't read that you tried O2. It works for most of us. I also insist that you work on my technique. You have nothing to lose and it worked so well for me that it changed my life at the time. They still appeared but I could knock them down very fast most of the time...sometimes within seconds but that was unusual. Anyway...Here:

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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

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.

I used to try to imagine I was pushing blood away from my neck 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: First time In my life of CH I'm scared
Post by JDH on Mar 18^th, 2008, 11:29pm

check your PM's Denis

Title: Re: First time In my life of CH I'm scared
Post by Braindead on Mar 19^th, 2008, 10:46am

Thank you everyone.

Yes I have been using 02 for many years. Way before the insurance companies supported it. My dentist gave me my first bottle to try after I told him I read about it.

That was many many years ago. I own my own rig. It just does not seem to work anymore. I have sucked bottles dry. Anymore it just seems to give me something to do. I am sure it helps some but my best relief is relpax.

But like I say the docs dont want me eating those everyday. Well guess what, to bad cuz i'll do whatever it takes.

Maybe the verapamil is working I slept like a baby last night, although I did eat a relpax at 4pm due to my screaming migraine all day long.

Several folks pm'ed me and ya know I very much appreciatte the support. Guess I was just at the end of my rope yesterday. Again thanks to all for the support.

Denis

Title: Re: First time In my life of CH I'm scared
Post by HappyElaine on Mar 19^th, 2008, 10:48am

Hi Denis, I have had clusters for almost 30 years now. I was chronic for the first 20 years. I have been though all the meds.
The meds I felt were killing me. I was forced after heart problems to come off my meds, I was scared to death, thought I was going to be beat up bad. The first week was hell I think my fear made it worst than it was. The second week got better. I was able to get o2 and man that worked great. (Read the oxygen info on the left of your screen). I been med free and doing great I get hit about every two years now. My last hit didn't last but a couple of weeks. I am not telling you to do this. I am just telling you what worked for me.
If you are taking meds, take them at the first sign of a cluster DON'T wait for it to get so bad.
I don't know what the right answer is for you. I do know that here some where on this board in all the information there is something that will work for you.
Try the o2 if you haven't already.
Know you can vent and ask questions any time. We will try to help you.

Title: Re: First time In my life of CH I'm scared
Post by HappyElaine on Mar 19^th, 2008, 10:51am

Please read the O2 information ! It might be in how you used it as to why it stopped working for you. I used it and did the same thing stopped because it didn't work. I got a cluster mask and up the lite and I am happy with the results.

Title: Re: First time In my life of CH I'm scared
Post by sandie99 on Mar 19^th, 2008, 11:00am

Lots of PF wishes your way, Denis! [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Sanna

Title: Re: First time In my life of CH I'm scared
Post by Rosybabe on Mar 19^th, 2008, 12:40pm

sending pain free vibes your way Denis, hang on , don't let the beast win!

[smiley=hug.gif]

Rosy

Title: Re: First time In my life of CH I'm scared
Post by Braindead on Mar 19^th, 2008, 11:35pm

Thanks again everyone for taking the time to help out. I am feeling better today. The CH is still around but my attitude is better today.

I am going to change my 02 deal around. I have been using the mask with holes on the side. Although I have taped those up long ago.

I just make sure I get a fresh blast of 02 on the inhale then blow out the side. I run 20 liters a minute.

But I will try the other deal as noted. 02 5 years ago saved my life for sure, but it just seems to have less effect anymore. Could be me being spoiled with relpax, they work fast but cant be good for me. Although it is what it is....