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Message started by ouchithurts on Jan 21st, 2016 at 9:31pm

Title: Questions
Post by ouchithurts on Jan 21st, 2016 at 9:31pm
New to the site, CH suffer for 14 yrs. now.  Got my first CH when I was 39, now they happen every 2 yrs. just like clock work.  Finally got a Neurologist in 2009 that really understood CHs.  Well on January 6th, I got my cycle started my Verapamil (240mg a day), it has been working great no headaches or the tingling.  Since the 15th, I have had level 7 CH every night after I go to bed.  Last night I had level 8 that lasted from 1000pm to 0500am, this is even after I took 2 5mg Zolmatriptian.  Now today the side of my head hurts, my nose has the tingling feeling and a small pain in the eye socket area.  I believe this is what occurred the last 2 cycles before my cycle went away, it is hard for me to remember what has actually happened from cycle to cycle.  Has anyone else experienced this?  Did your cycle end after this long extended CH?  My days, afternoons and early evenings are pain free.    

Title: Re: Questions
Post by Hoppy on Jan 22nd, 2016 at 3:03am
Hi and welcome,
You wrote,  Last night I had level 8 that lasted from 1000pm to 0500am, this is even after I took 2 5mg Zolmatriptian.

It's not normal for a CH to last that long! Maybe check in with a Headache Specialist for a second opinion.

Cheers Hoppy

Title: Re: Questions
Post by Bob Johnson on Jan 22nd, 2016 at 8:18am
The basic problem, Cluster, can change duration and intensity over time. This is especially true wit new cases but can occur evern after months/yeas of attacks.

But requires getting back to the doc to adjust dosing and/or the meds being used.

There are even cases where all meds stop working after long periods of effectiveness. Why??? but means the same drill: get backt to the doc and start making changes in your treatment program.

Title: Re: Questions
Post by maz on Jan 22nd, 2016 at 5:46pm
Hoppy - I had one that lasted 14 hours once. This was before I had the correct meds or I would have put paid to it after 10 minutes. Thankfully only had one like that and most last 35 - 45 minutes.

Title: Re: Questions
Post by Hoppy on Jan 22nd, 2016 at 11:38pm
Hi Maz & Bob,
I'm only going on from what I've read, and my own personal experience, but it's obvious their will be different opinions on this! Because after all, we are all different.

The attacks are relatively short 1-3 hours, with a very rapid onset. They tend to occur several times a day, most frequently waking the sufferer in the early hours. There are two types of the condition, episodic and chronic. In the episodic form, the attacks occur in a bout lasting several weeks 4 –12, after which they disappear only to re-appear at some later date. This is where the name cluster headache comes from. Chronic sufferers do not get this relief, and their attacks can continue daily for many years.

Hoppy

Title: Re: Questions
Post by 69Strat on Feb 6th, 2016 at 10:11pm
20 yr. sufferer. Chronic since 2004. Longest I ever had was about 6 hrs. Ended up in ER because I had nothing at the time to abort.  Most are around 45 minutes. Currently getting level 4 -5 every 3 hrs. or so for the last month. Weird and a royal pain in the ass. I use 1/2 doses of Imitrex inj while at work and suck em up when home. I have an excellent neuro who is baffled. Been on D3 since Jan. 1 and 480 verap and 600 lithium. Doc setting me up again with O2 because I can't keep eating and shooting all these meds. These things change character more than I change my underwear.

Title: Re: Questions
Post by Batch on Feb 8th, 2016 at 12:10pm
69Strat,

Odds are you're battling an allergic reaction that's keeping the anti-inflammatory regimen from preventing your CH.  These can be non-clinical with no obvious or outward symptoms so you wouldn't suspect you have one.

Quite a few CH'ers with problems similar to yours while taking the anti-inflammatory regimen have found a first-generation antihistamine like Benadryl (Diphenhydramine) helps get them back on track to a pain free response to this regimen.

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

Take care and please keep us posted.

V/R, Batch

Title: Re: Questions
Post by Wayne on Feb 9th, 2016 at 5:14pm
I dont think that what ouch is going through is terribly uncommon. Most of my attacks last 30 minutes and I can almost time them, but occasionally i will get one that just wont break, it'll cool off for a while but back up it goes. The longest lasted about 10 hours.
On another note Ouch, your verapamil dose is on the low side,  many folk are on much higher doses and 480mg/day seems about the average. best speak to your doc and get his opinion.

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