Hi there.

My first post:
I have been getting CH for over 30 years. Have often been misdiagnosed when going to Drs., especially since I am a woman ... they seem to think only men get CH. Therefore, I have tried many meds, some for CH and many for migraines. Unfortunately, nothing ever helped make the 'beast' go away. So I always ended up taking the Vicodin path. 

Now that I am older and haven't smoked in over 20 yrs, I don't get them as often. One cluster a year and sometimes, not at all. Have no idea why.
I wish I had found this website long ago. I was able to get my Neurologist to prescribe O2 after reading about it. Went ahead with it even though my health insur (Kaiser) doesn't cover it. This I am VERY upset about!! (How will they help others and prescribe it, if they don't cover it??)... can anything be done about that? Interestingly, they acknowledge on their website that it is the best treatment for CH. Strange, huh?   

I have good news and bad news about the O2. Good: I do not get the rebound headaches (from the pain meds) in the day time. Bad: I am now getting more at night. I wonder why?? Also, it seems the more I use the O2 during one night, the less the O2 works. Is this normal? Last night/into morning, I got 5 headaches. Have been using the O2 for only 3 nights now with 15 LPM, the kind of mask this site suggests and am kind of hyperventilating. Am I doing something wrong?

Thanks for being here!   
Robbie

I'm no longer with Kaiser, at first when i was with them they wouldn't cover oxygen either. After muchh raising of stink with member services, and showing them the difference between the abort cost of 3 imitrex injectables verses 1 E-Tank, they finally started paying for it. Kaiser is okay, but you have to be kinda a pushy, zealous advocate for yourself as they are into saving money.

You aren't in San Diego are you? My nurse practioner at Kaiser on Zion would listen to what I brought her from the board and would go along with what I wanted to use. Currently lithium as my prevent, 02 as primary abort and imitrex injectables for emergencies.

You did not mention a prevent med. Verapamil, Lithium Topomax, somehting you take daily, while in cycle, to reduce the number and intensity of your attacks. Worth talking to the doc as it has the potential to reduce how often you're getting hit.

Welcome to the board.

Joe

Hi Everyone,

Thanks for the replies!   

Hi Charlotte, I am in Ventura County. I don’t know where Patterson is, though. Is it northern CA?

I received the refusal letter and Kaiser states that my plan does not cover DME. I have a personal plan that I have to pay for myself, not one from an employer. Maybe that is the difference. I REALLY didn’t want to be taking the pain meds every day like I did before. Therefore, I am springing for the cost of the O2. Apria was nice enough to give me the price they give to Kaiser; so it’s not that bad.

Hi Guiseppi,  thanks for your imput. It is appreciated!!
I am not taking a preventative med. I believe the only thing that I have not tried is Lithium. Nothing  had worked.
I am only getting the hits at night. I have been waking with the beast 4-5 times a night. I am able to catch it quick enough to abort with the O2, though. The next day, I tend to feel residual pressure and red eyes (I’ve been calling it my ‘hangover’..lol), probably normal? Wow, it sure is hard to get a good night sleep, isn’t it?

I read about taking Melatonin here in the forum, so I bought some today. I got 10mg. Since I mainly get these at night, I am hoping the Melatonin will be a natural form of ‘preventative’.

Hi Lance, I appreciate your comments, which has really rounded out what everyone else has shared.

My Neuro actually prescribed me the O2 at 5-10 LPM, therefore the regulator I was given only goes to 15 LPM. I don’t think they will give me one that goes higher, but I am going to ask when I get more cylinders.  I have read here in the website about putting a finger over the holes on the one side of the mask when exhaling. I am doing that. And trying to hyperventilate. I find it very awkward and my mouth gets very dry and I have to stop to put moisture there. Today, I picked up a humidifier to add to my O2. Hoping  that helps.

I think I probably do need to use more LPM, since I do not get the tingly feeling that I read about. Also, when I hyperventilate, all the O2 is sucked out of the bag.
Question: when hyperventilating, is it important to breath deeply, pushing out all that is in the lungs or just quickly?

(I am finding that it is a constant inner fight for me to not fall back onto the pain meds....they are such an easy fix. And for years, that's what I had relied on. BUT I WILL BE STRONG...LOL)

I AM SO THANKFUL YOU GUYS ARE THERE….NONE OF THIS COULD BE LEARNED FROM THE DOCTORS THAT ARE SUPPOSED TO BE HELPING US.

~~~~Peace.

Ooops!!!   

I ment that I put my finger on the holes on one side when I INHALE. Sorry for the 'brain fart'....lol.

~~Robbie