Hello everybody, My name is Steve, I'm a 52 yo male that has had eposodical CH since I was 8 yo. It wasn't correctly diagnosed until I was 14 yo and went to see Dr. Lee Kudrow, now that he's retired I see his son Dr. David Kudrow. For most of my life my CH were so predictable, I got them every year in the fall with the time change and they usually lasted 2 to 3 months. After trying various drugs we found the combination that worked best for me, 480mg Verapimil and 2 Cafergot tablets and hour before bedtime with oxygen at 8 LPM to abort any that broke through the medication. This worked exceptionally well for me for many years. When Imitrex first came out I added it to my arsenal, first the injections and then the nasal spray 20mg. It seemed like I had things pretty much under control, got used to stocking up on the meds so I had them when the next cluster started and couldn't get in to see the doctor for a month! I lived as normal a life as you can while suffering from CH. For the last 20 years I have kept my same sleep routine and pattern, in bed @ 10:00pm and awake @ 3:45am and took a nap everyday @2:00pm for 45 minutes Which brings me to why I'm on here today. I have been in remission for 7 YEARS until the beast reared his ugly head on 10/17/2010. On September 29, 2010 I checked into the hospital to have major back surgery. I had it performed by what I consider to be an exceptional Neurosurgeon. I had three discs removed and a four level spinal fusion from L3 to S1, which is pretty drastic but considering I was taking between 6-8 10/325mg Percocet each day just so I could get through each day I elected to have the procedure (I won't even get into the post surgery pain I experienced). So 17 days after the surgery my cluster started and it started with a BANG! I was awakened 2 hours after I went to sleep with a Kip 6. By the time I got out of bed put on my brace from the surgery and made it to my O2 tank it was a Kip 10, had my tank cranked all the way up to 15 LPM which is as high as it goes, after 10 mins with no relief I tore through the medicine cabinet and found an Imitrex nasal spray that expired in 2005 and YES I USED IT ANYWAY, as soon as I used it I went back to the O2 and in about 5 mins it started to subside and then went away. I didn't know what to think, was this a rouge headache or the start of a cluster? Two days later my question was answered, got them every other day and only at night until 10/30 and now I'm getting them every night and they're aborted within 10 to 15 mins with O2 but as soon as I go back to bed within an hour it's back and this goes on all night until I finally say to heck with it and stay up and have some coffee. I called the Dr. to make an appointment right away but the soonest one I could get is next Tuesday and because the last time the Dr. saw me was 7 years ago he couldn't call in any prescriptions so until then it's me, my O2 tank and some OLD Imitrex spray.......lol My question to all of you is.....Do you think it was the change in sleep patterns for that two weeks or the trauma to my back with all the nerve manipulation that triggered this new cluster? I just hope and pray when I get through this one I go back into another long remission. Believe me I feel for all of you but especially the ones who suffer with Chronic Clusters. It's funny when you've been in remission for so long you ALMOST forget just how painful they can be. Wishing everybody a headache free night! BTW....this site is a wealth of knowledge, can't wait to update my O2 regulator and mask!

Well you're senior to me by 2 years, and I didn't start until my teens, otherwise we're pretty similar!

I had the same problem you do with the headache coming back within 10-20 minutes of shutting off the 02. I used to take an oral cafergot when i started the 02, 02 would knock it fown, cafergot would buy me several hours. This last cycle i replaced the cafergot with sugar free Red Bull. I'd drink the Red Bull while aborting the attack with 02, Red Bull prevented the comebackers. Since you use verapamil you will need to go easy on how many Red Bull, or any other energy drinks containing Taurine, that you use.

Bejeeber mentioned some research Batch was doing on how your arterial PH levels make you more or less succeptible to attacks. Try adding the following supplement to your daily routine:

Magnesium, Zinc and Calcium Citrate with Vitamin D, washed down with fresh lemonade, up to 4X a day. Many are finding it reduces both the number and the intensity of their hits. Cheap and certainly worth a shot.

Your verapamil dose is middle to low range, some go as high as 960mg a day to get relief. Might be time to up it a bit.

Glad you joined us! It's good to have another So_cal boy around!

Joe

Wow, thank you for all the replies! I only had 2 hits last night and on the second one didn't mess around, took the Imitrex nasal spray while on the O2 and slept the rest of the night (which was 3 hours). I actually felt pretty good all day today. I called the Neurosurgeon that operated on me and explained what was going on. He didn't hesitate one second before asking me what pharmacy to call, I love a doctor who understands!!! He wrote prescriptions for Verapamil, Cafergot, Imitrex Nasal and Injections and renewed my O2 prescription. The complete shock was that the insurance company or the Pharmacy didn't question any of them? I was telling him (the Dr.) about the site and how everybody swears about the Red Bull or energy drinks and to my surprise he agreed and used "Excedrin" as an example, " when they added caffeine to Excedrin it became a wonder drug for Migraines. If people only knew they could do without the aspirin and acetaminophen the company would go out of business". I guess I need to add Red Bull to my shopping list. FYI he seems to think it was a combination of trauma and the change in sleep patterns due to the fact the cluster started approximately 2 weeks after the surgery. He said for the first 2 weeks after the surgery I was so full of narcotic pain killers I probably wouldn't have felt a headache even if I had one? I will also look into the vitamins. Thanks again everybody for your support.

Steve

So Cal Steve wrote on Nov 6^th, 2010 at 12:25am:


CHs can be more painful than what narcotics can hide, as many of us have found out.

However you'll find that the benefits of narcotics has people both for and against here. I just know that for me they don't help, but give me oxygen and I'm pain free quickly.

Mike NZ wrote on Nov 6^th, 2010 at 2:23am:


20 minutes after writing that I had a K8 and I was pain free with no side effects about 8 minutes or so later.

Yes, I'm an O2 addict but it does work!