Hello everyone!

My name is Andre, I'm 39 and am diagnosed with Chronic CH.
Currently, I am on Verapamil, Depakote and Imitrex SubQ injections for an attack.

My clusters almost always come on during sleep, usually around 2am.  I get intense sharp pain behind my right eye, stuffy right nostril and the pain (more recently) extends to the back of my head/neck area on the right side as well.

Prior to seeing a neurologist who is a headache specialist I was having multiple attacks per week sometimes daily.  For me, the pain doesn't subside and would reach about a level 8 with nausea and light sensitivity almost daily to every other day.  Now, I average 1 per month and I rarely if ever have to use aleve or advil to take out the onset during other weeks. 

I have found alcohol to be a MAJOR trigger.  Just the other day I attempted 1 bud light and didn't get past 1 sip before I had a slight twinge of onset feelings and dumped the beer.  Was not worth it at all.

I would love to go completely headache free, but that hasn't happened for me since I was about 21.

At the moment I am tapering off of the Verapamil as my doctor doesn't like having someone on it all that long I guess (It has been 2 years.) and since the Depakote was added is when I saw the most significant improvement, which means it's the more effective of the two for me.  I take 500mg 2x day of Depakote.  I use about 1 injection of Imitrex per month at this point as well.  I am also on a 50mg/day dose of Zoloft. 

Coming off the Verapamil has me getting spells of feeling light headed as I am on a 120mg/day dosage down from 240 which was as high as 360mg about 3-4 months ago. Is this pretty par for the course (light headedness)?

Other triggers (usually need a combo):  air pressure changes, humidity changes, lack of hydration, lack of sleep, stress

Hey Andre,

Welcome to CH.com, You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way...

There are many CHers here with lots of experience controlling their CH. 

It appears your neurologist is going by the standards of care recommended treatments for CH...  except I don't see any oxygen. 

Oxygen therapy at flow rates of 15 to 25 liters/minute with a non-rebreathing mask should be the first abortive of choice followed by subcutaneous triptans.

Check your PM InBox, I've sent you some related information.

Take care and please keep us posted.

V/R, Batch

I was on O2 therapy for a while.  It had absolutely zero affect on my CHs.  It had a non-rebreather and flow was 12-15mL for up to 20 minutes.  I was bummed.  I was hopeful that I could reduce or get off the meds.

Oh well, today I went back to 240mg Verapamil because I was getting shadows daily.  Can't have that happening again, so I'm going to try 240/120 alternating days as I did when I went from 360mg to 240.  First though, I plan on staying at 240 for a couple days. 

I'll check my inbox now...Thank you in advance.

Dre22 wrote on Jan 14^th, 2017 at 8:10pm:

I was on O2 therapy for a while.  It had absolutely zero affect on my CHs.  It had a non-rebreather and flow was 12-15mL for up to 20 minutes.  I was bummed.  I was hopeful that I could reduce or get off the meds. Oh well, today I went back to 240mg Verapamil because I was getting shadows daily.  Can't have that happening again, so I'm going to try 240/120 alternating days as I did when I went from 360mg to 240.  First though, I plan on staying at 240 for a couple days.

With oxygen the flow rate can be important. For some people who don't abort at 12-15lpm can abort at a higher flow rate. There is some great info about O2  - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It also covers some info on technique too to get the best out of it.

For long term preventives it can take time for them to build up to an effective dose. For verapamil it takes 7-10 days for a dose level to take effect. I'm not sure how long it takes for Depakote, but it could be similar, so expecting changes in a few days might be a bit optimistic.

Thank you for the information!  I probably should have been more specific about my medications...

I have been on Verapamil for about a year, year and a half and Depakote for about 8-10 months.

We began at 240mg Verapamil daily.  No real help.
Increased to 360mg daily.  Only a little improvement.
Depakote 500mg 2x daily.  Chronic CHs reduced to 1x month.

The Depakote was added only after the 12-15L O2 did not work.  On my own, prior to finding this site, I tried up to 20L 02 and it still had no effect. 

I am absolutely Vitamin D deficient and was put on a supplement plan of 2000iu/day.  I am not as good with it as I need to be and in reading information on this site it seems I should be taking way more Vitamin D than I was prescribed by my PCP.

With verapamil most people respond with 360-48mg a day, but some go up to around 1000mg a day before they get relief. So it is possible that you just didn't have a high enough dose for it to be effective for you, however your personal medical history might mean that the maximum dose suitable for you is lower.

With dapakote giving just one CH a month, that looks to be a pretty good result!

For oxygen some people only get relief at higher than 20lpm. Did you read the oxygen page I linked and did you try the hyperventilation technique with the non-rebreather mask?