Anthony,

My last cycle was like that, it even tried to get to the right side. I've always been left sided.

Shadows went on and on and on.... Right side didn't feel right for the longest time, but eventually it faded and quit.

Beast is always changing as we all know, Hope it improves for you soon, sounds like you're due for a break.

Mine lasted the worst part of two years, then just went away. I can't attribute anything I did to it's stopping... just ran it's course I guess....

All the best ,

Baer

Thanks guy's
I oddly feel better knowing I am not the only one. It is like the shadows are just a reminder that the beast is lurking or something! Seems like I am always on edge!
Anthony

Hi Anthony.  Sounds a little similar to what I'm going through.  I'm at week 16 of my episode (previously the longest one was 12 weeks).  The last 6 weeks have been weird...marked mostly by very low-level attacks, at much lower regularity than usual (and almost exclusively at night after falling sleep).  Some nights, no attacks.  Other nights, low-level (K1-4) awakening pain that is more annoying than anything else (and usually dissipate quickly).  As well, a near-constant shadowy feeling of things just not feeling right....but not exactly pain. O2, red bull etc. does nothing to stop these "shadows" (if such a term is in fact adequate...for me its a bit different than what I have seen defined as "shadows" on this site...).  It kinda feels as if I have to "bleed out" this weird numbness/shadow that builds up in the evening, by having a (usually low level) attack, and once I do I can usually sleep normally etc.   Sometimes I get the "afterburn" for a while even if the attack level was low (I guess some would call this a shadow too).  Only a handful "bad" attacks i.e. K7 and up in the last 6 weeks, and only 2 K9s in that period, so its not entirely distressing.  Sometimes I can just "tell" that its OK for example to drink a beer...and there is no triggering effect.  Also I'm not using verapamil or much of anything during this time....I've experimented and it doesnt seem to matter either way, like I'm just in a different kind of episode now.   Currently I'm only using kudzu and my usual fish oil-magnesium-D3 cocktail.

Its weird, but I do know from the others that the Beast does morph.  I'm obviously not keen to conclude I am chronic now.  To be honest it just feels like my episode just wont give up and is still trying to persist even if its at lower pain levels and less frequent.  I would have assumed that "chronic" even in low cycle would mean more painful attacks (or more frequent) than what I have.  In fact, since the start of this episode its been a bit different...fewer attacks, much higher ratio of nighttime attacks than usual, less high-Kip level attacks etc. and this near-constant feeling of the wet cheesecloth (to use Bob's great term) on my head and a persistent mild twinge around my eye.   

So it could be worse.  The fact that I'm almost guaranteed to get through the entire day w/out any real pain is reassuring.  I can engage with my work and family normally, which is something I value greatly.  Sleeping normally, though not as important as my family and living life, would be nice too, but I've just adjusted by going to bed earlier so that if I get the annoying low-level alarm clock pain (sometimes 2 or 3 times in a night) at least once its over I can get 5 hrs or so of straight sleep.  So I'm not feeling like I want to catastrophize all this...its not too bad compared to my "normal" episodes, just a bit annoying and also curious.

Seeing these other testimonies gives me hope that this will eventually just putter out.

I've been episodic for 22 years and the remissions have increased to up to 3 years now...but I also have read testimonies and anecdotal evidence that the episodes get longer, and maybe less predictable, with age.

So I'm hanging in there, hope you are too.  If you are like me you may look on the bright side in that at least we are not getting hammered like we do during a "normal" episode.   

Take care everyone

Sorry I skim read through all of that - don't need a hit right now - I wonder are you taking Verapamil? 

This is just my 2c so feel free to ignore...

I don't take any drugs anymore, just ride through the cycle with the 02 because I found the Verap gave me constant shadows, well after a cycle 'should' have ended I'd still be dealing with shadows.  Then everytime I started lowering the dose the shadows would amp up again.  In the end I bit the bullet and stopped taking it, the shadows slowly went away. 

That was about 3 or 4 years ago, I'm not going back.  02 for me   less shadows, shorter hits, shorter cycles.

Having said all that I really, really hope that you all get some relief soon!!   

Wishin you all the best,

Kate

P.S. Just read your post again Stymie and see that you are not taking verap.  Damn, I was hoping my post might be helpful 

Kate I totally know what you mean.  Its not at all scientific for me to conclude much, but when I started taking verapamil 3 cycles ago that is when my episodes started to become different and weird.  I definitely felt that it worked in reducing the number of hits (and certainly way less K7s and up) so that is a good thing.  But the shadowy business...and prolonged, extended period of the episode etc.....all this had me wondering if the verapamil was causing this (?).  So I stopped taking it 4 weeks ago and nothing much changed....still mostly low-level hits, no change in the frequency of hits and average intensity as far as I can tell.  The shadows/tenderness is still there, as I described above, but I feel this is slowly dissipating too....but very sloooowly.

Hard to say if once this episode ends and whenever my next one starts (or if I start getting bad hits again), whether I will start verapamil again.  I did see some benefits when in a bad
episode.  Maybe its a case of being an acceptable tradeoff.  I do know that for now I have no intention of starting it again.  I have my trusty O2 tank (but to be honest I dont use it for most of my hits these days....its almost like they are too low intensity and of short duration for the O2 to make much difference, and I've tried to knock out the shadows/soreness with it but to no avail....but for those times when I just "know" its going to be a bad hit my tank is still my most trusted friend).

Thanks for your insight though...very interesting.

Regards

hmm... this thread has me wondering just how much of the constant shadows i am experiencing are from the verapamil...

i am an airborne infantryman in the US army, on deployement.  since there is very little i can take with me on long patrols, i tend to stick with pills that i can put in a small pill bottle and store in a pouch in my kit.  i am currently taking taurine pills, guarana pills, and verapamil with me on patrols.

the guarana and taurine get crushed up, mixed with a bottle of water, and used as an abort at the first sign of ramping.  i take the verapamil every day as a prevent.  i also carry trex injections in my calf pocket, just in case nothing else works.

what i have been experiencing over the last few months is an almost constant shadow that fluctuates in intensity.  its like a hit that is constantly trying to ramp up.  sometimes it does, and usualy i can abort it before it gets bad enough to affect my performance.  if i think the guarana and taurine arent going to work, i use the trex, which, thankfully, doesnt happen often.

the thing that gets me is that i was diagnosed only a month before i deployed.  i count my blessings that i had a very young, very new, and very knowledgable PA refer me to a very good neuro.  that was when i started taking the verapamil, and that is when things started changing.  at first i attributed it to the change in environment: the heat, the constant changes in sleep schedule, the overall infantry life...   now i am wondering if the verapamil is what caused the changes.

i have suffered cluster headaches for about 9 years now, at first they were episodic, only hit at night, and were generally low kip levels.  a few years ago i almost died from a bad muscle/heat injury that caused my liver and kidneys to nearly fail, after which i started getting hit almost every day, usually several times a day, whith no telling what the intensity would be.  now, however, its a constant lingering shadow that NEVER seems to fully go away.  it just fluctuates.

im not going to stop taking the verapamil just yet, as it does seem to greatly reduce the severity and frequency of attacks, but as soon as i redeploy i will certainly investigate all my treatment options.  this certainly has given me a lot to think about, and you are certainly not alone in your experience.

We all have to have our own best interests at heart, but I do think we need to be careful. Some collective wisdom and experience seems to say, verapamil in continuing use, can lead to "rebounds," "worsening attacks," and/or increased shadows. All I can add to that is, I have been on verapamil a very long time, in varying doses, and as a chronic, I have found it is the best means for regulating all of the above. Far beyond any other means. I also believe that many times we tend to ignore shadows, and not treat them as we would a full blown attack. When this happens, at least in my experience, the beast takes heart and his hold on my eye is ever stronger. So I attack shadows the same way I would a KIP whatever. This more than regulating my verapamil intake has led to much fewer hits and less frequent shadows. Just me, though. Blessings. lance

Hello again everyone, 

Stymie I agree with what you have said.  After taking verapamil for a few years I most definately noticed a change in my cycles.

I started getting these around 18/19 now 42.  I had always been hit on the right side then occassionally I'd get a left hit - ouch and then 2 times I had a hit on both sides at the same time - now that frikken hurt like hell. 

Anyway after noticing changes and the shadows lingering on for what seemed like an eternity I just decided not to take it any more. 

My cycles still seem to be morphing, the last episode I had which was around this time last year (I actually missed a cycle woo hoo) was pretty much mostly shadows with only a couple of hits a week for around 10 weeks. 

I had a hit yesterday the first one in a long time, I think I'm probably coming into cycle - happy to have the 02 by the bed.   

I can't say for sure that it was the verapamil that changed my cycles or that caused the intense ongoing shadows - seems the more you think you've got it under control - the more it is likely to change. 

I really just wanted to mention my experience in case it was of help to anyone out there.  That said, every one is different and what works for one may not work for everyone. 

The 02 has been a life saver for so many of us and thankfully most people do get the relief from it that they seek. 

Gees, it would be bloody nice if 'they' came up with a cure 

Hello all.  I thought I should come back to this thread and update my situation in case it is helpful to anyone.  Yes, I found resolution eventually.  Whereas my episodes would "normally" last 6-8 weeks with extremely painful hits, this one went 20.  The first 10 weeks were generally less painful and fewer bad hits than usual.  I took my usual regime of verapamil (440) and melatonin (6 g), plus O2 and redbull (new addition) for the hits.  Also by week 3 was on the Batch regimen of D3, Omega 3 and magnesium (though only 3000 IU D3 given it is not available where I live and I had to ration).  This episode had a different "feel" than before, right from the start.  Less distress overall but a near-constant shadow.  While I had my share of hits in the first 10 weeks, the final 10 weeks were mostly just a continual shadow...which ever so sloooowly became less and less prominent.  Fewer breakthrough HAs too as the days and weeks passed.  I experimented with stopping the verapamil (noting some comments from folks convinced it prolongs the episode). No difference.  No better or worst symptoms.  Tried the beer test at week 14 and although I hadnt really had a significant HA in 2 weeks (just the occasional attack very focused on eyeball and feeling like a spoon scoping away rather than a knife inserted in my eye)...I still failed the test (ouch).  By week 16 I could sleep through the night and nap without being woken up by shadow/minor eye pain.  Shadows eventually ended by week 18 and at week 20 I passed the beer test.   

Though I had no reason to doubt the anecdotal testimony that episodes can last longer as one gets older, that shadows can carry on seemingly forever, and that the Beast indeed changes its tactics sometimes, I guess I had to experience it to really know.  So for anyone who might be anxious over a longer-than usual episode and/or constant shadows and a new, different character to your condition, try not to assume you have gone chronic or that you have to necessarily go back to the drawing board.  The extra anxiety that may come probably doesnt help the condition anyway     For me I can conclude that, at least this time, taking verapamil had no real benefit after a while (though anyway I was getting lightweight HAs only by that point).  Did it prolong my episode and/or create an endless shadow?  Who knows.  I'll keep using it next time.  Practicing Mindfulness...well, I'll always have good things to say about that.  It isn't something to "use" per se during attacks, and reckon it can't be expected to change much there, but overall for keeping me more engaged during the PF time (i.e. not dreading the next one), less caught up in my condition  and for helping me see the difference between "pain" and "suffering".  The Batch regimen?...well I cant really make any conclusions on its impact but I'm sure it didnt hurt and anyway its safe and good for us for other reasons. I'm still on it and will continue to.  Red bull was useful only when I wasnt near O2...wouldnt abort but reduced the length (similar to what coffee does).  Didnt seem to quicken abort rates with O2.  Melatonin...I swear that has helped quite a bit, in at least helping me get 4+ hrs sleep even during worst times (impossible before I started using it).  I wont miss the nightmares though     Oh and I used Kudzu but can't say it may much difference...again, it probably didn't hurt.    

Best wishes to all and thanks for your advice, support, ideas and most of all for your inspiring perseverance.  I learned a few new things this time once again.  See you again in 2 or 3 years (hopefully not earlier...no offence) and meanwhile my wishes of PFD for you all.

Stymie

That's a great Thursday morning story! So annoying how what works for one doesn't work for another, just the nature of the beast.

Enjoy the pain free time, you've earned it!

Joe

Thanks all and also Batch for your suggestions. Yeah I just miscalculated when I was able to buy some D3 at Singapore airport at the early stage of the episode (and never expected Bangkok, which I go to regularly, would not have it available...searched everywhere including trying through a neurologist at BKK General...).  Availability may change in the future, at least for BKK if no VN.  Meanwhile I should be able to stock up on everything next month when I pass through Singapore again.   

Cheers
Stymie