Hello Everyone,
I wanted to introduce myself and tell you a little about myself.  My name is Susan.  I am 43 years old Preschool Teacher and I live in California with my loving very supportive husband Richard.  We have no children other than our pets.  

I have suffered with Regular Migrines since I was 12 years old but for some mean reason I have been choosen to be the lucky recpient of Cluster Headaches at the age of 21. :'(  I suffer from Chronic Clusters.

Even though my husband gets migraines from time to time he has never gotten the beast so he doesn't really understand the pain I go through.  Along with Clusters I also suffer from several other diseases which causes me a great deal of pain but over the years I have developed a high pain threshold but even still the beast knocks me down.

I have been on several different medications for the clusters including Oxygen but so far other than the oxygen I haven't found anything that has really worked  :( and my insurance plan just took that away last month.

Well thats it in a nut shell.
Susan  

Many here in that situation use welders oxygen. You can buy a used tank and regulator.

What a crock that your ins cut you off. If you were covered than how can they do that?

Chronic, I am also and the only prevent that works for me is lithium, and it only cuts the pain (no cure) and hits in half. Taking your O2 is like stealing raw meat from a hungry lion to me. I would be taking several pounds of flesh if my ins tried that!

Welcome home to CH.com!

Roland. :)

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Welcome home my friend.  

I don't know how you do it teaching preschool as a chronic
sufferer.  I hope you find something that works for you.
I know how you feel with the insurance too.  Mine won't cover it
at all and for how much you go through weekly, it's not worth it for me
financially.  I have other means, but i'm also episodic so I don't deal
with CH daily.  Seeds are my next weapon to try.  

I wish you PF days!

Chad

preschoolers would give me a headache   :)

Hello Susan,
    What prevents have you tried?  I use Prednisone (for ten days) along with Verapamil (360mg) for the duration.  This worked better in the past then it did this time. However, my hits were not as severe.

     Sucks, your insurance won't cover oxygen.  I just started using O2 a coouple weeks ago with great results.

                                                  Good PF Luck To Ya
                                                          JPC
   

I have tried so many over the years to be honest I can't remember all of them.  I had a fantastic Neurologist for four years then my husband's work changed insurance companies and now the one I am with - well lets just say i'm :( and disappointed.  When I started with this man he was promising.  I told him what was going on with me that I was on Lithium, Topamax, Prednizone, Cymbalta, Oxycontin and Oxygen.  Not only do I have CH I also have AS, Fibromyalgia, and Neuropathy to name a few so he went ahead and just kept everything the way I had it before.  Except when it came to my oxygen.  I told him exactly what I had 15ltr with a non-rebreather mask using a portable tank (can't think of the name of those are now - not the big M tank).  He said he would call it in and set me up right away.  Sure enough two days later the company came with the oxygen tank however it was the BIG M tank which I had to keep in my living room not my bedroom and it only went up to 9ltr with a nose devise.  I was so pissed >:(!  I put up with it even though it did not get rid of my demonds.  At best it would only lesson them if I was lucky.  Then they took it away all together.  

When I asked my Neurologist about started back on Imitrex injections along with maybe some other medication combinations since I do not feel what I am on currently is working anymore he just blew me off.  That pisses me off more than anything else but I have no where else to turn he is the only one I can go to right now. :'(  I blame him for why I currently am only substituting instead of working full time.  

Sorry for going off on a tangent but thank you for letting me vent.
Susan
I'm just very sad and angry today

I am very sad to hear this. Time to check into the welders O2 for your sanity. Let us know what we can do (if not already posted) to help you get what should be a given!

Print out the O2 info from the left and fax it to the dummy that denied you the oxygen! :'(

Huggs,

Roland.

  Hi Sue,    Welcome to the site, I am right there with you my doctors suck.  
  Rolo makes a good point if O2 helps get the welders O2 its the same thing as medical O2.  You can get it from any welders supply company and the regulator you can buy off ebay for about $15 CGA-540 is the one you want but make sue it will go to atleast 15lpm.
 Hope you find some relief soon,  Phil 8-)

wrote on Nov 20^th, 2008 at 4:37pm:

Hi Sue,    Welcome to the site, I am right there with you my doctors suck.     Rolo makes a good point if O2 helps get the welders O2 its the same thing as medical O2.  You can get it from any welders supply company and the regulator you can buy off ebay for about $15 CGA-540 is the one you want but make sue it will go to atleast 15lpm.  Hope you find some relief soon,  Phil 8-)

I forgot to add , don't tell them (the O2 Comp. that you are using it for CH!!!). Tell them you are getting it for your hubby in the garage for his clasic car restoral... ;)

Hi Susan. I'm sorry you have to deal with this horror. We've all been there although I was never chronic. I can't imagine. I'm posting my technique here that worked for me. It takes practice but we have nothing to lose:

                                         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