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cavalier

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sleepy and sick
Nov 9^th, 2009 at 8:50pm

Its been quite a few weeks now since my last attack but over the last 2 weeks i've been getting really tired and feeling really unwell at the same time (or there about) each night (6.30) also the tinatus in my left ear gets louder and then stays for the rest of the day.
With a touch of achey eye and puffy cheek.
Any thoughts.
I'm assuming its the Verapamil (240mg daily).
Colin.

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DennisM1045

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Re: sleepy and sick
Reply #1 - Nov 10^th, 2009 at 12:45pm

Hi Colin,

Was 6:30 your normal time for a visit from the beast? If so the puffy eye and associated symptoms could indicate that you aren't out of the woods yet. Though the absence of pain is a sure enough sign.

I've also read where some others experience a short depression following a cycle. Sometimes it can take a bit to be back up on your game again. This crap takes a lot out of you.

Don't know what to say about tinnitus. I've never experienced it. You should probably talk to your Dr about that one.

I've been taking a daily dose of 240mg Verapamil for two years now without any mood, tiredness side effects. But that's just me Wink

Good luck...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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LeLimey Ex Member	Re: sleepy and sick Reply #2 - Nov 10^th, 2009 at 3:01pm Colin are you episodic? If you haven't had an attack for a few weeks have you thought about winding down off the verap? I tend to think, like Dennis, that they could be "phantom" hits so maybe it would be worth doing an alcohol test if thats a trigger for you or something? Just thoughts from me too - hope you get a break though!
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Joni

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Re: sleepy and sick
Reply #3 - Nov 10^th, 2009 at 5:34pm

Quote:

Its been quite a few weeks now since my last attack but over the last 2 weeks i've been getting really tired and feeling really unwell at the same time (or there about) each night (6.30) also the tinatus in my left ear gets louder and then stays for the rest of the day.
With a touch of achey eye and puffy cheek.
Any thoughts.
I'm assuming its the Verapamil (240mg daily).
Colin.

After your headaches stopped, did you cut down on the Verapamil?

I was tired the first few weeks with the Verapamil but it got better. I don't think your other symptoms are indicated with Verapamil use but you should check and see.

I have only used Verapamil for my last 2 cycles (a year apart) and have had similar symptoms (eye/cheek/etc) when I try to cut down on the Verapamil. I never had this problem before in other cycles. To me, so far, it seems as though the Verapamil drags it out and I can't get off of it. My cycles were over several weeks ago and I am still taking a low dose that if I even barely change...I get the cluster like feelings all over again. I am waiting to see a new neurologist and will probably have to keep taking it and not have an answer until then.

I have noticed on this site that many people are able to quit it after their cycle and some others stay on a maintenance dose. I'm not sure why and am hoping I hear more about this on here.

Good luck!
Joni

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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DennisM1045

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Re: sleepy and sick
Reply #4 - Nov 11^th, 2009 at 2:16pm

Joni wrote on Nov 10^th, 2009 at 5:34pm:

[quote author=4A58544A5657390 link=1257817846/0#0 date=1257817846]I have noticed on this site that many people are able to quit it after their cycle and some others stay on a maintenance dose. I'm not sure why and am hoping I hear more about this on here.

When out of cycle I maintain a 240mg dose of sustained release verapamil. It helps to manage both my high blood pressure (along with two other meds) and my IBS.

When I take it during a cycle, I switch to the regular release formulation and titrate up to ~400mg according to the schedule found here: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Quote:

Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication.

I ween myself off using the same method. If the attacks resume, I'm still in cycle but have found a new theraputic level. If not, continue the process until I'm at 240mg and then switch back to the sustained release formulation.

My last cycle I didn't use it and relied instead on abortives alone: Oxygen @ 25lpm and the occasional jab of Imitrex. I think I'll go that route again. If it all goes to hell I can call my Dr for a pred taper and begin to titrate up again. My arsenal, as always, is on standby Wink

One other note, at 400mg of Verapamil I have to be very careful with energy drinks. Taurine and Verapamil are both calcium channel blockers which can affect heart rythm. I made the mistake of blocking too many calcium channels one night. It wasn't fun Roll Eyes

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: sleepy and sick Reply #5 - Nov 11^th, 2009 at 4:03pm Thanks for the info, Dennis!
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cavalier

Ex Member

Re: sleepy and sick
Reply #6 - Nov 11^th, 2009 at 4:32pm

Thanks for that folks,
6.30 wasn't my time (Around 9 ish and 1 to 2)
when i say tired, it comes with a huge hit almost to the point of falling asleep sitting up,feeling unwell i can't put my finger on it but you probably know what i mean.
Is it normal to have underline pain(very mild but there never the less from when the sleepy bug strikes)
I did find out that the tinnitus is apparently one of many side effects of verapamil.
I'm going to try and reduce the daily dose and see what happens.
Thanks for responding.
(Im sick of feeling like shit)
Colin.

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Joni

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Re: sleepy and sick
Reply #7 - Nov 11^th, 2009 at 5:19pm

I went back and read your first post again, also. I am unfamiliar with getting sleepy with a cluster headache. However, going to sleep is often the time you get them, for me even a nap...but they wake me up very quickly. I haven't heard anyone else speak of the ear ringing from Verapamil, but that doesn't mean it isn't doing it to you. Remind me again, did you cut down on your Verapamil when your headaches stopped? If so,I am wondering if you did that too soon. Sounds to me like you are still fighting clusters coming on. I don't know what else to suggest. Someone else will come along and give you tips, too. Have you been back to your doctor?

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MJ

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Re: sleepy and sick
Reply #8 - Nov 11^th, 2009 at 9:24pm

Quote:

when i say tired, it comes with a huge hit almost to the point of falling asleep sitting up,feeling unwell i can't put my finger on it but you probably know what i mean.
Colin.

Colin there are a few of us that get the sudden and intense sleepies. "silent sleepies" It comes on very rapidly. At times the feeling can go just as quickly.

It seems to be a part of CH, again for a few of us. Something I have experienced for well over 3o years.
Generally felt separate from the pain as though it were a separate attack, at least its most noticeable then.
The unwell feeling may be related to the verapamil.

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MJ

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tylerb

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Re: sleepy and sick
Reply #9 - Nov 11^th, 2009 at 9:53pm

Colin - I'm with ya on not feeling well. I have been pain free for nearly two weeks and I think I should be feeling better. Obviously since I'm able to sleep at night I feel a littel better, but I definitely don't have the energy needed. I'm still on 1200 lithium and 480 verapamil.......I'm think once I begin to taper I will start to feel better.

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