Hello,
This is my first post. I have been surfing this site since April, and I guess I am finally accepting that I have CH. Id have to say a part of me was hoping for a tumor, at least then there was a possibility for relief. I have seen the neurologist a few times and he is certain I have the clusters. I have had 5 big episodes (#10's) and tons of lingering (I think you call it shadows) headaches. Right now my head is cloudy and the back of my neck is sore and it feels like there is a sword in the back of my skull. I am supposed to be working right now (in an office) yet I am glued to the site as I am aware of what I may be in for tonight. Right now I am at 360 mg of Verapamil and have been on the prednisdone 6 day pack which I finished on Sunday. My last #10 was 8 days ago, which followed up the next day with a 7 and then the next with a 5. Since then I have been ok to take the Aspirin and IB profin for relief. I work full time and have 2 young  kids and a husband that works full time and goes to school full time. I am scared to be alone with my kids, my parenting skills have plummeted, I have no patience left and am on edge at all times. My doctor's plan is for Imitrex shots at work and day time and has now given me a script for Oxygen at night. I think I finally found a place that supplies the Oxygen. I have insurance that pays 90/10. I guess my question to all is, How much do most pay for the oxygen? I have a script for 10/12 liters per minute with tubes. I am maxed with bills as I have been to 3 doctors and ENT, 2 dentists a CT scan and an MRI. Then my 4 neuro appts at $50 each and then the Verapamil and percocet and Prednisdone. Its never ending. Also, I want to pick out some vitamins, what do you think is the most important?
Thanks, sorry for the whining!

Hello Melissah

Not that I've tried O2 my self yet (out of cycle at the moment) but it sounds like you've got a script for nasal cannulas , it seems from what I've read here that a non rebreather mask is essential for the O2 to work at all and a minimum of 15 liters per minuet some say minimum of 25 liters . have you read the oxygen info link to the left of the screen it has essential info on using O2 to abort attacks in minuets.

Imitrex injections are grate, stops attacks in 2-5 minuets for me , Imitrex tip to the left of the screen helps make your stat doses last longer while getting up to 6 uses a day with out overdosing (I've not had the need to try that yet)

sounds like your doc has a good idea on treating these things just needs a little tuning print some relevant info off from this site and see if hes willing to work with you on this especially your O2 script.

Any how , welcome to the board , read lots and ask as many questions as you like and feel free to have a rant when you need to we don't mined  ;)

Good luck and God bless

Nigel

O2 is the number one abortive, along with imitrex injections. You can also try melatonin (5-18mgs at night) and energy drinks (Monster, Red Bull, 5 Hr Energy) at the first sign. Headache Boy is correct. You need a non rebreather mask, and a higher flow. Read the link at left. Taking O2 at night preventatively will not help. The key is to reach O2 saturation rapidly when a hit comes. To do this, you probably need to move up to a 25-60lpm flow. And watch the percocet. It doesn't work fast enough to abort a headache and generally won't help anyway. Stay with ibuprofen for the residual or leftover pain. There are other tricks of the trade too that are spread out all over this site. Read and read and read and take notes. Keep a headache diary to try and identify your cycle times and triggers. You must become your own best advocate. God bless! lance

Hi Milissah welcome, sorry you had to find us but glad you did.I am fairly new here but these folks know what there talking about.I get my hits 99.9% of the time at night after falling to sleep and tried Melatonin 10mg an hour before bed and have slept like a baby for 2 1/2 weeks.The Red Bull as soon as you feel a hit coming helped me also.Pain killers seem useless for an attack.I was using the Imitrex nasal spray and it killed a hit in a matter of mins. Good Luck.

Welcome to the board, take a few minutes and read the oxygen info link on the left. The good news is it's relatively cheap. My insurance didn't cover it for years, I was paying $4.25 a  month for tank rental and $12-13 each refill. MUCH cheaper and just as effective as the trex. BUT...it must be used correctly, the keys:

A Non Re Breather Mask, this makes sure your lungs get 100% oxygen, no outside air, no exhaled air, a regulator of at LEAST 15 LPM, a very small percentage get relief as low as 7 LPM, most need at least 15, some get no relief until 25 LPM or better. High flow regulators are available on E-Bay, my wife recently scored me a spare for $20.  Get on it as soon as you hear beasty scratching.

The energy drink stuff sounds weird I know, but give it a few tries. Red Bull, Monster, any containing the combo of caffeine and taurine, chug it down at the first sign of an attack. Since you are taking Verapamil limit yourself to one or two cans a day as it can cause issues with the verapamil.

For a vitamin supplement, many are having success with the following regimen to reduce the number of attacks:

Magnesium, Calcium with Vit D and Zinc, washed down with fresh lemonade, up to 4X a day. Midway thru my last cycle I was getting creamed and even 02 stopped working. 30 hours after starting the above routine 02 was stopping them again, cheap and worth a shot.

If you continue getting a lot of hits at 360 mg Verapamil it may be time to either increase the verapamil, or combine lithium with it. BOTH require qorking closely with your doc as verapamil is not a med you adjust without monitoring.

Wishng you some peace soon....CH with kids is one heavy load. [smiley=hug.gif]

Joe

Hi Melissa,

Sorry you are here! 

The only thing I have to add to the advice given above is to throw away the percocet!  It will do noting for CH, but WILL make you dependent and/or addicted very quickly if used more than a few times.  I've been there, and you don't want to be.

Jerry