Don't know if I'm doing this right!  The attached file is my CH history.  Have tried just about everything and am now on my 6th neurologist in 10 years.  The current regime was first Rx'd by neurologist #3 (no longer in practice) plus had to convince current Dr. to Rx oxygen (insurance won't pay for).  Read a lot and found your site many years ago, helped me get Rx for O2.

Insurance companies are not very informed about CH, but it's going to get Obama Better once Big Gov takes over?  Be very afraid of the future for CH sufferers!  I don't think Big Gov will care a lot about a MINORITY of people suffering with our condition.  Okay, no more politics!

Think this is enough for first post.  Someone let me know how I did??   Thanks,  Poppy
P.S. 17KB file would not attach will try and copy here:
Poppy
History:  Diagnosed 10+ years ago and for 8 years had active 6 to 8 month periods of CH’s with 4 to 6 months of remission.  CH’s usually started in September, October and would stop March, April.  Last two years there has not been a remission period for over 2 weeks.
Current Medication:  200mg Verapamil: Twice a day
500mg Depakote:  Once a day
Oxygen @ 12 ltr/min:  As needed, 5 to 15 minutes until pain subsides
40mg Relpax:  Every night that I want to sleep more than two hours at a time
Current Symptoms:  Ghost headache entire day, two or three days a week will take Goody Powder if pain starts to interfere with work.  Try to go to bed 9 to 10 o’clock (alarm set for 4:30am), two hours after falling asleep will wake with headache.  5 to 6 nights/month, if headache is minor (1 to 3), do nothing and hope it will not return, try to go back to sleep.  If pain persist, I use oxygen therapy and can usually go back to sleep.  6 to 10 nights second attack will occur, it’s now 3am, use oxygen to stop pain, make coffee, take Goody Powder and stay busy till it’s time to go to work.  Most nights pain is 4 to 7, use oxygen, take Relpax, go back to sleep and wake up when alarm goes off.  Since I can only get 18 Relpax/month will go weekends with just oxygen.  This usually means 2 to 3 attacks/per night, fairly tired the next day.  If I try to nap on the weekend, almost every time wake with (4-5) CH.  This has been my normal routine for two years with the only real remission being twice a year when I took prednisone for a month
So, I’m a 61 year old walking headache, Dr. doesn’t want to try lithium and I understand his reluctance.  Of the three (lithium, prednisone and Relpax) Relpax seems to have the least side effects, but don’t know about taking 18/month for the next 15-20 years?  Although I’m not showing any symptoms (complete yearly physical) family has history of heart problems.

Quote:

Someone let me know how I did??

You did just fine.  ;)

The first 2 things that stuck out to me is 200mg. of Verapamil is quite a low dose.  The other is your liter flow for 02 is wayyyyy low.  M0st of us have a regulator that goes to 25 and some, even higher.  The difference in aborting a headache between 15 lpm and 25 was astounding.

Linda

200mg twice a day is on the lower end, but right up there for effective preventative levels. My therapeutic level was 480mg per day (taken 240mg twice per day). Worked better with 900mg of lithium per day, however.

Thanks for the feedback, maybe need to "supersize" regulator for O2 and Brew am very interested in the lithium treatment.  Could you fill me in on your current condition, how the lithium is working, how long on it, etc.  I don't see a lot of CH change in my future and would take prednisone every day if I could.
Thanks again,
Poppy

Yeah I'd take prednisone every day too! Guarantees me almost 100% pain free time. But long term use can be really harsh on the body. ;)

Like Brew, I use lithium. I'm episodic....which is funny because lithium has historically been more effective for chronics....I'm almost 50 and have had CH over 31 years. On cycle I do a 2 week prednisone taper while I ramp up on the lithium. Ideal dose for me is 1200 mg of lithium a day. I pee a lot the first 2 weeks until my body gets used to the lithium, I'm a little lethargic at first but nothing coffee doesn't overcome. At these levels we're no Hollywood zombies! I've been using lithium forever....20 years??? or so, and have had no ill effects yet.

Joe

Edited to add...at 1200 mg a day it blocks about 70% of my attacks and all but ends the night time attacks.

Guiseppi,
What are durations of CH cycles?  Guessing when CHs start you start prednisone & lithium, then continue lithium until cycle ends.  How often to they do blood work to check things out?

Linda,
One thing I forgot to mention, never had high blood pressure and the 400mg/day Verapamil has dropped my blood pressure to 60 over 100 and Dr doesn't recommend increasing dosage. 

Poppy - I'm off lithium completely right now as it seems my cycle has come to an end. My cycles are all over the place, so I can't really tell you how long I'm on or off of it. I've been on it for as long as 3 years straight, and for me, combining it with verapamil really knocks the beast for a loop.

You do have to submit to regular blood tests while taking it as it can mess up your kidneys if you start taking what would be toxic levels. It's only through these tests that you and your doctor can determine what the therapeutic level is for you.

This combination - lithium and verapamil - has been an absolute life-saver for me over the years.

Up until my 40's, my cycles were spring and fall, 8-12 weeks long, generaly 2 attacks a day, mid monring and early evening. I hit my 40's and they went all over the place. My longest cycle went 8 months, my longest remission almost 2 years, and with that change I started getting my first night time attacks. Prior to that if I could get to sleep I knew I was safe.

The first time I ever tried lithium, the neuro was real cautious. Started at 300 mg for 3 days, then a blood draw, 600 mg a few days then a blood draw, 900 mg for a few days then a blood draw, finally 1200 mg for a few days and a blood draw. What all that accomplished was establishing 1200 mg is what worked for me. Apparently, it's not based on your body size but on how your own body prcesses the stuff. Now I slowly ramp up on the lithium using the pred taper to carry me. After I've been on it a bit I usually get a blood draw. This will be a little different as I'm in the middle of changing medical plans and will be in limbo...just as a cycle is starting...ARGHH!! (Another great argument for stockpiling meds!!!)

Bob Johnson has an excellent post Under the meds section, "Is There Any Med That Doesn't Cause Side Effects." It goes into detail about 'Potential Side Effects" vs. likely. Definitely worth a read! (He is one of our more learned people, anyting he posts is worthy of consideration."

Joe

Thanks for the information I may need it to convince  Dr to give it a try.
Thought you might be interested in this:  Dr has Rx'd one week/month regime prednisone (30, 30, 20, 20, 20, 10, 10) with the following results: no CH's for five days, nights six & seven CH woke me up, but went back to sleep without any medication or O2.  CH's back after day 7 as usual.  Any comments regarding this regime?  7 days a month with no or minor CH, worth the risk associated with prednisone?  As stated before I would take prednisone all the time if it were possible, not only does it stop CH,s it makes almost all my other aches go away, and the euphoric usually kicks in on day 3.  The only minor (to me) setback is I seldom sleep more than 4-5 hours at a time, but naps are taken when possible.
Enough for this year, here's hoping for a rewarding 2010.

Lots of luck with the meds regimen for you as well I see. I have tried the 70/60....10 7 day taper a few times which the initial 70mg seems to really help initially, I see some others have indicated a 2 week taper (whats the dosing?). I am in cycle now as well for the last 98 days (none for the last 3 days however)...I am going to the Neuro Wednesday - hopefully to get a script for 02, if not I'll be using the damn torch set oxygen. I am also looking for prevention and abatement solutions and an abortive that works, presently my doc has me on 100mg Atnenolol/day, which several have said not a good therapy but it seems to have given me a little relief for a few days anyway. I have tried the 500mg Depakote, been on Calan and others but have yet to find a good solution. Hopefully this Neuro I am seeing has some insight into Verapanil, some triptans or lithium ....I am bringing him much reading material from this site!