well...   i have been going through this for about 5 months now.  i have no insurance so i have never been to a doctor about this.  at first i thought i was going to die... really...  it is so scary when in your 33 year of life this new unbearable pain harpoons your head few a 1/2 hour or so a night and then vanishes as quickly as it comes.  it is like nothing i have ever experienced before.  i try and tell my family and friends and they feel for me but i know there is no way for them to have any idea what it is like un-less you go through it yourself.   i bought some excedrin migrain pills and take them when ever i have the slightest thought of one of these m-eff-rs coming my way...  sometimes abusing them i fear.   i can be doing anything...  laughin having fun.. and then just like that...   the right side of my face gets this little tingle and i know its inpending doom from there...  my eye waters..  my teeth feel soft...   my nose and cheek bone feel like someone through a brick at them... and i cant really move..  but i cant sit still either...  it is for real an experience like no other...    i feel like i could throw up..  and it terrifies me...   i have been a skateboarder for almost 19 years.. and know all about pain and what it feels like...  but nothing...NOTHING .. like this....

am i just screwed...  is this what the rest of my life is going to be like...?
help me.. please.

i have done a lil reading about this and noticed only 1 percent of the population is as fortunate as my-self...   being a non lottery, bingo, publishers clearing house, whatever winner.. i have to ask, why am i so lucky to be the proud recipient of such an unbearable pain.

if you have any help, suggestions or advice... i would surley like to hear it.

thank you
dax

First of all, welcome. You can manage this, but you'll have to dispense with the negative attitude.

Click on this Letter to Friends and Colleagues, print about 20 copies, and give them to the people who need to know:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Second, click on the yellow link to the left called "oxygen info." You can breathe 100% oxygen at a high flow rate and abort these things in under 10 minutes. If you cannot afford medical oxygen, you can get welder's oxygen - it's the same stuff.

Last piece of advice for now: Stop eating the Excedrin. They do nothing but eat a hole in your stomach and make your whole digestive tract bleed. They're worthless for CH. You're better off slamming an energy drink (like Red Bull) and sucking the oxygen.

This should give you enough to work on for the time being. There are many helpful people around here. Stick around. Others will add their advice shortly.

thank you for advice....  i know i am frustrated...  its just a terrible thing we got here..  

thanks for reading my post

dax

daxm wrote on Feb 27^th, 2009 at 7:24pm:

thank you for advice....  i know i am frustrated...  its just a terrible thing we got here..   thanks for reading my post dax

Dont worry, you will learn everything you need right here to beat this beast back into hell!

Welcome and keep reading!

Hi and welcome Dax,

What you've described sounds like cluster headaches to me, but I am not a Dr. only a chronic sufferer for almost 22 yrs.  I fully understand the pain you're describing.


You said you have not seen a Dr.  Can I ask you how you came to the conclusion of CH then.   I have no Insurance either but it is imperative that you get a real diagnosis.   He needs to rule out anything more sinister and if he comes up with a diagnosis of Clusters then you need to be treated for it.   Preferrably with first.. a preventative and then an abortive, like oxygen.

These headahces are painful as hell but without treatment they're going to be worse.  I, too do not want to give you too much to try to digest at once...so my advice is to get thee to a Dr.

Linda

first welcome and we are here to help.
brew is right on for immeddiate advice, i might add an soft ice pack, frozens peas, the new rice bags frozen are what i like. some like heat  find what works for you
stay away from narcotoics and the useless excedrine.
get to a doctor that knows about cluster headaches or is at least sympethetic to it. it  took me six years to get officially diagnosed and i dont know how many dr;s.
there medicines out there that help
hang in there brother, and yes lose the negative it wont help you any.
other smarter people will come along i am sure to help,

Being a supporter rather than a clusterhead, the best advice I can give is to listen to the sufferers here.  They know INTIMATELY of what they speak.  And get a proper diagnosis.  Speak frankly with a neorologist about finances; I'm sure they will work something out for you.

Some sufferers here have been through it most of their lives.  Some are chronic (multiple hits per day, sometimes for years), and some are episodic (once or several times a year with long breaks in between).

After a proper diagnosis to rule out anything more sinister, the one lesson they will all impart to you is to live between the hits.  If it is indeed CH, it won't kill you.  You'll learn to live in the the joy of the times you are pain free.  And you'll arm yourself with abortives that WORK, to mitigate the visits by this evil beast.

Best of luck to you.

linda... thank you...  
   the way i was led to this conviction of CH was from webmd.  i though i was having a brain anerorism.  i cannot spell

  so i put my symptoms in the search spot and they suggested i had CH....    and then i started reading...  and almost all of the critiera is there...    but mine started only months ago....  and have gotten progressivley worse.    

i know i want to go to the doctors...   but money is a problem...  and really from what i have read....is that there is nothing that can help...   oxygen..  so i hear that works....    i will have to look into it i guess..  

well thank you

dax

Hi Dax, and welcome.

I'll reiterate what others have said about seeing a doctor.  Self-diagnosis is a risky thing--it's best to rule out other, more sinister things that can cause serious head pain.  I understand that seeking medical attention can be expensive, particularly when you're not insured, but you really must ask yourself if you can afford NOT to see a doctor.

As for "nothing that helps"...well...it's true that there is no cure, but there are certainly things that can help.  A lot.

Again, welcome.  Good to meet you.

Best wishes,

George

Before i was diagnosed they were suggesting i had my nerves cut out from my gums (glad i didn't go down that route). My nutty surgeon prescribed a course of medication prednisolone,imigran nasal spray followed up with verapamil and although the first year didn't seem to make a lot of difference, this year especially i've had minor bouts which i can cope with easily.
If it can happen to me it can happen to you, Keep your chin up then may'be like me you'll be sending a message of support to Someone else.
Stick at it you can do it,
Colin

colin... thanks...   i now realize i must go get checked out...   its not so much that i am sad or depressed about whats going on...  its more confusion..   and worry.  i had an attack today..  around 5 p.m. it was a short one...  about 20 minutes or so.  in that 20 minutes all i can think about is how to make it stop..   and then when its over... it feels like i just ran 5 miles...  or had a major surgery..    it feely wipes me out.


well.. thanks again... for the thought....      


dax

O2=Sanity.

See a Doc.

Welcome.

Steve G

Hey Dax...I looked at your pic and I saw a really young guy and it made my heart break because  I realized like most of us you may have to suffer a while til you get some relief.

Dax...PM (up above) me your phone number so I can call you.   I certainly do not have all the answers but I would like to take you under my wing,  so to speak and help you.  I've been chronic for almost 22 yrs.  I have a lot of experience, if nothing else. I also have other alternatives.

Linda

Welcome Dax and I hope the hits are getting less frequent and less severe for you.

Please see a neurologist, get the diagnosis properly. Its most important to rule out other conditions that may mimic CH. An aneurism can cause similar pain in some people and it can be deadly. Thats how crucial it is to get the diagnosis right.

A prednisone taper first off may stop most of the hits for several days so that you can regain your sanity and give you time to look at the long term plan.

Please do talk to Linda, she is very experienced and a very caring person. To be able to talk to someone who understand what you are going through while most of the world doesnt can be a life saver.

Do not hesitate to ask as many questions as you like and if you need to share, whinge, cry ... go right ahead, we are always here, we understand and we got your back.

Painfree wishes to you.

Welcome Dax. Your description sounds just like mine when they showed up. Until you get some professional help, the frozen peas, ice, O2 and other good stuff here is worth a try. Just something to think about. In the meantime, try this:


                                         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