My neuro told me he cant do anything else for me. He diagnosed Cluster headaches, Trigeminal Neuralgia, Migraine, Chronic Persistent Daily Headache and took away all my meds. Then sent me back to my regular doc. The past week has been loads of not fun. The cluster headaches aggrivate the TN which cause migraines which cause me to stay in bed because if I move I wanna jump out the friggin window! And because of the CHs all I want to do is move, move move. I have no oxygen either. The ahem Idiot took that away as well. I see my doc next Tuesday. Tonight is bad but Sunday was worse and I had to be watched. I never knew what pain was until all this happened. I wish I could get disability for it and not rely on my boyfriend to support me. But my ex husband told the court I was a drug addict because I take pain medication the way the doctors said to and that I am an alcholic because when I do not have CHs I have a drink about once or twice a year. And I went to Al Anon because of an addict in my life. Him! Please keep me in your postive thought stream. I will keep you all in mine. I just love this board. You all are so nice here. Thank you for that.

Hugs, Sophia

Hey Sophia - ask around here about hooking up welder's oxygen - it's cheaper and you don't need a prescription - I myself don't know the details but a lot of people here seem to.

Sorry life's tough right now, Sophia.  

Do look into Welder's 02.    I am not knowledgeable about it but there are many here that will help you get it set up.  

Stay strong,

Jeannie

What the hell kind of "doctor" diagnoses a person with CH then takes all their meds away, including O2? This makes no sense to me whatsoever.

That's not practicing medicine - it's practicing sadism.

Get a lawyer. Now.

That's insane!!!  How can a Dr dx CH and then take away the meds that may help?  This makes no sense!!!

Get the welders rig and then like Brew said, get a lawyer.

I hope you find some answers soon.

-Dennis-

Geeze. That doctor sounds like one Vincent Price would play.

Sorry about what you're going through but here is my technique that costs nothing and doesn't affect anything you may be taking or experiencing other than this horror.

It's been awhile since I posted my little technique. Sorry I haven't kept up. Here goes kids and I hope you all give it a try. It works for some.

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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.
I hope this technique is helpful and I wish you the best of luck

Charlie      

So sorry to hear of your situation Sophia.

You should call up that old Doctor of yours and remind him of the oath he took. The Hippocratic oath. It states that as a Doctor he will not cause harm to a patient.

Wishing you the best

Iddy

Hi Sophia,

I keep my welding setup for the times Kaiser umm (forgets) to renew my O2 script.If you or your boyfriend have a welding setup great thats 90% of the battle, if not ask your friends if they have one you can use, offer to refill their tanks when your done, even if your not going to use the acetylene. You can also rent a O2 tank from an welding supply house (DO NOT SAY ITS FOR MEDIAL USE) or they won't rent to you. So get your tank and a regulator (regulator for O2 at harbor freight for $20.00) or you can buy a gas welding setup for 100.00  that will give you regulators, torch, hose, everything you need except the tank.
Ok so you have the welding setup, hook everything up regulator to tank - hose regulator - other end to torch. Now you need a piece of 1/2 vinyl hose you can put one end around the end of the torch and tape it in place. (this will work as is but you need to hold the hose while using it) or you can take one of your old O2 masks, you should still have one if they gave you disposables. take the hose from the mask an pressure fit it over the end of the torch, tape to hold it in place. Now your ready to rock 8-)
Turn on the tank and set your regulator to 100 psi turn the O2 knob on the torch until you have enough O2 flowing to keep breathing, adjust flow to your needs. If you find yourself with the torch all the way open and not enough air open the valve on the tank further or turn up the pressure at the tank regulator.
Hope this helps

~James

Sophia,

I rent a welder's O2 tank.  Bought a regulator that goes to at least 15 lpm, and a non-rebreather mask (CH.com store has masks, if you don't have one already).  This was a couple of years ago.  

Tank rental costs me $56.00 a year, and re-fills around $16.00.

I sits in my living room as a "lovely"  :P addition to my decor - ain't pretty - but it works.

Sandy

I have taken up sewing and crocheting to concentrate on something other than the blasted headache problems. All 4 of the stupid diagnosis make me nuts!

Anyway I am thinking of making a pattern to dress up those ugly O2 tanks that way the significant other in your life wont nag you to ...

1. Keep them in the garage

2. Keep them in the bedroom as close to your side of the bed as possible

3. And keep asking the wonderful question of do you really need that thing?

If I come up with anything I will let you know. And lemme tell ya ... you all gotta keep an eye on those Loved Ones. I found my last O2 tanks in the garage because they were scratching the hardwood floor honey. Ahem .... thats why they were sitting on a rug!

And another time I woke up and stepped on one because it was so ugly he couldnt stand to look at it anymore so it was laying on the floor and halfway under the bed.

Does anyone else have a lovely story like this?

Sophia

Hang in there Sophia!  You've come to the right place, and are in good hands!  Your neuro sounds like a quack!!  I've never heard of a neuro diagnose CH, and then yank the meds!  That's beyond bizarre!   Your ex sounds like he's a spoiled, self centered little brat.  Good riddance to him!  It's too bad he's caused you so much grief.

Hugs,
Ellen

Someone crocheted a E-Tank sock many years ago and posted a pic! It was a thing of beauty. I see it as a serious money maker!!! ;D

For now, those goofy little soccer mom chairs that come in the nylon bags??? The bags are just the right size for an E-tank. Then everyone thinks you're just another soccer parent!!

Joe

Quote:

Does anyone else have a lovely story like this?

I am married to an absolute Angel.  But in the beginning Andrea hated the tanks and was furious about the 4' monster that had invaded our bedroom.

It was only after she'd seen 1st hand how effective it was at dispatching the beast that she got over the intruder.  She still doesn't like it but now understands and maybe even accepts them.  Of course it has taken a couple of years to get to this point.

Give him time to adjust and make sure he sees how effective it is for you.  Once he realizes that the tank will give you back to him, I'm sure he'll come around...

-Dennis-