Hi,

my cycle ended last september 09 (typically 4 weeks). Had the typical post clusters shadows. Didn't bother much with it.

Then the shadows got stronger to the extent that i would feel strong pressure in my temple an hour into sleep. This would keep me awake througout the night. It didn't start another cycle as i was onto kudzu and melatonin to get rid of it.

Thought i was ok but the same thing happened again few weeks later. Through out this time, i was having 'shadow' (pressure on the headache side that may progress to muted headaches)

For the past 5 months, i have been dealing with this constant shadows and it ramping up (3 times since Sept 09)

Recently started on a pred taper but doesn't seem to abort the shadows.

Any one with similar experience? Any advice?

Nothing like that in my 21 yrs of CH. Have you tried Indomethicin?

Don

31 years here, nothing like that. Try some of the shadow remedies:

4Way Nasal Spray......that's the brand name, spray into the affected sides nostril

Excederin Migrain.....be careful as overuse can cause rebounds.

Energy Drinks, Rock Star, Monster etc.

I assume you've already ran it by your doc? Any sudden, weird changes involving the head you'll always want to run by the doc and make sure there's nothing else besides CH going on there.

Joe

I don't have a good answer, but I have a recent observation.  Seems like when I used to let the CH cycle run its painful, unmedicated course they would visit for a few months and then be good and done, not to return for a year or 2. 

I have been using the clusterbuster 'alternative' treatment for the last 1 1/2 years.  It seems like when I shadow (pre-CH cycle) I can use the medicine to stop the cycle, but a few months later it wants to come back, requiring another dose.  It feels like I am pushing it into the future a few months, not stopping it altogether for the year.

This really struck me with caffeine use.  I usually get the a.m. CH, around 9 or 10.  When I have a coca cola or coffee around that time I don't get a headache, but it will come in the afternoon instead.  So not curing it for the day, just pushing it back several hours.  A caffeine dose in the afternoon has been working.

After busting my recent cycle after 3 weeks and 3 doses I have had quite of bit of gentle shadowing always making me wonder if the psilocybes did the trick??  Seems to have, it's been about 2 weeks without any hits, but I can tell my little cluster buddy wants to hit me, just can't.

My point is.....I think (25 years of CH, but undiagnosed for most of it and I don't presume to know more than anybody here) that with some of the meds we all take it can do funny things to our cycles.  AND the longer we take the meds the more time the CH has to change its characteristics.

Wish I had more or better info.  Stick with it!

--Shaggy

I do have prolonged shadows too, my cycle started April 2009 and ended May 2009, and until now, February 2010 I have these shadows hunting me, tried lots of things, it seems they can be ceased/triggered differently, and jump between both eyes/temples, which makes me unable to answer if I experience same thing and what causes/stops it, and if it is even a CH.

I hear ya'll...me, too!  Only in the last 2 years since I have depended on abortives and preventatives have I had these lasting shadows.

Same, the last couple of years I have had more shadows than hits.  In a cycle of shadows at the moment.... waiting for the hits, maybe they wont come? Maybe they will?  Hoping they don't!

I must say tho' I agree with the thought that preventatives (verap for me) or caffine etc simply delay the cycle/hit or as in my case of late, simply replace them with constant, constant shadowing.


Kate

Kate...2 years ago is when I started Verapamil as well.

Its interesting isn't it.  I don't remember having a problem with shadows prior to taking verapamil - but that doesn't mean that it didn't happen - I just don't remember.

A few cycles ago I decided to give the verap a miss and just use 02.  It was a doozy of a cycle, ouch!!! but I don't think it was as long and I don't recall the shadowing after. 

Decided to go back on verap cos I can't deal with the pain - and its no good for my young son to see me like that.  :-/

As an aside, I would be interested to know if any studies have been done re shadowing and the use of verapamil.

Kate

I used Verapamil after using Prednisone and the only thing I noticed was that my blood pressure which is normally low (80 over 50) with no side effects to a somewhat normal blood pressure of (113 over 60) and now feeling light headed. Didn't notice a difference in the shadows, I just know that if I feel them I have to do something quickly...or I'll go crazy again (not literally but you know what I mean)

Bonnie :)

I AM ON VERAP ALSO BEEN IN CYCLE ABOUT A MONTH AND A HALF PF FOR AROUND 2 WEEKS :D SO CANT COMPLAIN!!! BUT HAVE CONSTANT SHADOWS TOO EVERYDAY SO MAYBE SOME CONNECTION WITH VERAP? I DUNNO NOT MUCH TO COMPARE IT TO SINCE IT MY SECOND CYCLE EVER! SHADOWS ARE A REMINDER THOUGH :o

Thats me too.
   My cycle ended Dec. 29th, and now I am totally detoxed from the Verap, and all meds.  Here it is february, and at least twice a day, I get a sharp pain in the temple....just like one is starting, but only lasts for a minute.
   I figure 6 months of my veins doing weird things in my head, is going to take at least a few months to get back to normal. :D....OH...did I say Normal.! HA!
    Nothing normal about CH.  lol

Sorry for the late reply. I had no access to internet the past week...

Did a pred taper to knock out the shadows... didn’t work. Previously, my definition for shadows are low grade clusters that don’t break out into a headache. I’m not even sure if what i’m going thru are shadows.

I get woken up 2 hours after falling asleep. No headache but the veins at the back of my head and temple area will be pulsating. Just like after going thru a heavy workout. My heart would also be pounding at times.

In the day, i get a pressure on the back of my head or right temple area that can build up to a mild headache and twitching of the veins. This can happens many times (up to 20 times)

As with the previous cycle, i was on kudzu, melatonin and cafergot. This has never happened before.

Incidentally, I work in the construction industry. This cycle, i was exposed to some of the industrial cleaners they used to wash the floor. I remembered it triggered one of the worst headache i got. When i was out of cycle, it triggered very strong shadows when i was exposed to it. Took me some time before i found that the solvent was a problem for me. Its been 2 months since i was last expose to the solvent though. The ‘shadows’ are still there so i’m not sure if that’s the problem.

I have had clusters for nearly 30 years  i have recently been in 2 year cycles which last for 6 weeks with some shockers     This time when my cycle started I got on to VERap for the first time as an abortive,   I am now in my 7th week and I have not had a shocker but the shadows remain with me      So for me there is a connection between VErap and prolonged shadows   all the best L

Verapamil can be causative in blood pressure related headaches. Not trying to cause fear but if the shadow headaches persist long after use than an EKG should be considered.

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"Background: High dose verapamil is an increasingly common preventive treatment in cluster headache (CH). Side effects include atrioventricular block and bradycardia, although their incidence in this population is not clear.

Method: This audit study assessed the incidence of arrhythmias on high dose verapamil in patients with cluster headache.

Results: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%.

Conclusion: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia"

I get symptoms like that in betweem cycles. i always say it feels like a circle in the back left side of my head. I find they are more commen right after and before a cycle but can happen anytime.

Hope you feel better soon

Similar experience but in pre shadow

I have not got into the clusters (normally a 6-9 week cycle) have used verap to abort but have ended up with consistent shadows for 3 months and still have them

I use 2 paracemetil and 2 very strong anti inflammatory at the same time with some caffeine to reduce shadows intensity and duration. Has worked for me

HOpe this helps

Hi everyone,

My last CH attack was nearly 4 years ago, the attacks were so bad that in one of the attacks, I ended up suffering BELLS PALSY, (doctors could not determine if CH had any connection) he prescribed PREDs and the subsequent treatment helped break the CH cycle and eventually the effects of Bells Palsy.  Currently, I am experiencing strange types of headaches, accompanied by twitching eyelids and pressure from the right temple of my head towards behind the ear.  My CH attacks can be traced thru my late 20's, this has been the longest remission that I can remember.  My biggest concern is that, I KNOW that an attack is imminent BUT instead I have these strange and peculiar "headaches" that I can bear. What is going on?  I hate the WAIT, might as well let the BEAST out and get it over with...I am 46 yrs old, I've had CH for 20 years....I am in uncharted territory, I am scared...can someone please help me? 

First cycle for me at 53. Started this past Dec. 2009. 10 day pred dose ended big hits middle of Jan. Wasn't diagnosed with CH until Feb.3. Continue to have shadows everyday, pain in temple and nerve pain in scalp, more intense at night. Never been on verapamil. Had a rough nite last. It really ramped up. Not taking anything now. The pred caused my blood pressure to go up and now on 2 meds for that. Also have blockage in carotid artery on my affected side. UGH! With all of this other stuff going on, not sure what to do. Finally have a app. w/ nuero Apr 7. Hope I can make it till then. any advice?
donna mae :o