Ok...I have been on this site for a couple of weeks now and was in desperate need of advice and THANKFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUULLY there is this site, don't know what I would do without it. Ok, question... This last cycle has been going on for 6 weeks, first 3 weeks no PF days or nights, then 2 PF night, then almost three weeks of hits every night, maybe up to 5 a night-morning, kip scale 9.
Now I have had 2 PF nights a couple of days ago...then 3 days of hits then 4 PF nights-mornings, and am resting at home because I am dead tired. Guess these weeks have really worn me out. I have been taking the most beautiful naps ever haha :) but I have woken up with a shadow most of the times, not even compaaaaaaaaaaaaaaring it to the other ones, maybe kip scale 3? completely tolerable... Does this mean that this cycle is ending?

Blessings!

Tiffany.S wrote on Oct 8^th, 2013 at 4:37pm:

Does this mean that this cycle is ending?

It might mean that, but it really is hard to tell. There is quite a variation between people how cycles end and it can even change between cycles. Sometimes they just fizzle out with longer and longer gaps between CHs, sometimes there is one final horrible CH and that is it, finally sometimes people just find that the CHs get weaker over time until they stop.

So it's a matter of learning what happens with yours.

However I hope it is the end of your cycle. If it is, enjoy the pain free time and be prepared for the next time...

Hi Tiffany,
Like Mike said, we are all different when it comes to CH's      
never tell what the  [smiley=evil.gif] is up to, so it's never
over till it's over. Mine were like clockwork, at the end of
Spring and Autumn they would just disappear.  ;D

Hoppy.       

Thank you :) I guess since this is my third cycle ( first one was 5 years ago and didn't analyze when it started when it ended, didn't even know it was CH...second one was 2 years ago, and started to understand everything a little better knowing that it was CH) so this time around I am making note of everything... We are entering spring here, and change of seasons is one common denominator I have found soooooooo....

I shall just wait and see :) and enjoy the heeeeeeck out of my PF nights :D

Saludos y bendiciones! (greetings and blessings... in spanish)

Hi Tiffany-

As others have said, CH is different for everyone, including the pain you experience, and how it can morph to different areas, differing types of pain, and different intensities...I've had my share of "what the heck is that?!?!?!" moments when the pain would drastically change after a month or two of the same old thing, and cause me to rethink my pain management strategy and learn another new skill along the way. We're all wired a little different than the next.

My clusters used to be somewhat consistent and actually very predictable for the first ~18 years regarding #CH/day, #days/week, #months/cluster, #months remission, although each cluster started and ended a little bit different than the last. My clusters were farther apart the first few years for me, just like yourself. I have no idea when one will start or end now days, because I'm possibly on the outs with the beast...like he can't figure out what to do with me anymore, so he leaves me alone for the most part...maybe I kicked his butt too many times and he's trying a new strategy. Anyway, I get very short CH compared to years ago (3/4hr instead of 3-4hrs), very short clusters (1-2wks compared to 3-4mos), remissions of 12-24mos (instead of 3-4) and no time-frame when they will hit anymore...it's all random for me now.

I'm about 12 days into a cluster now, and have had PF nights, PF days, sometimes PF for 24 hrs+, sometimes 2/night, mostly 1, sometimes 2/day, mostly 1 or none...I just never know when the next visit from the beast will be...which makes it more difficult for me (thanks, beast) to figure out when I can plan on having "my time" to cope with it and not be caught in the middle of something important. So, I don't plan anything around CH since ~2008 when the "outs" seem to have started...I just wing it and see what happens from one day to the next, and hour by hour. But, it is far better than the first 18 years was regarding having all these PF months to enjoy...sometimes I don't know what to do with myself and all this lack of pain for such a long time!!! It's really amazing what you can get "used to", isn't it??? I really can't complain, thinking back on all those years of coping with CH.

Not to give you a horrifying picture of what CH can turn into, just a little insight as to how CH can change for some of us. Hope yours isn't a long-winded event like mine used to be. BTW, I'm a non-RX 23yr CH survivor.

All the best, and may you have PF D/N soon.

Hey Tiff sorry to hear about your Clusters they suck! A few tips for ya, ( I'm a chronic clusterhead, but I'm sure most of this works for episodic ) I saw the word naps in there, for me Naps make clusters much worse. I would avoid those If possible! Being episodic, idk that you would be willing to try this but Psychedelics will bust your cycle out of the water. Possibly for years at a time. If you consider this, go all natural and be very safe about it. Also w/ the shadow pain a bag of Ice ( thin as possible ) directly on neck for most people will relieve the pain within minutes. And is effective for hours. Pure oxygen, will abort both as well. After combating clusters for 5 years now, I've found allllllll medications make them much worse. Especially intensity wise, I used to be a 9 or 10 on the kip 365 24/7... After dropping all medications, implementing the mentioned treatments above I now have months PF... And when I do get them they rarely are full blown and last under a half hour. I seriously think meds need to be last resort for episodic, some can push you more to the chronic side. If you have any questions, or any of that seems useful to you shoot me a PM. Good luck!

Use at least 10mg of Melatonin at night time. For me it has prevented nocturnal attacks for an entire year.
It's possible your cycle is ending.

You are all right. In my case, there is no way to really know when the beast will come and try and mess with me. Last night I was dead tired ( I do TRY and avoid taking naps since I do notice that these make things worse) or sometimes, I nap PF free....but 80% of the time the beast wakes me up... I guess sometimes after not sleeping for a couple of days one wants at leaaaast a little rest...oh well...thought this was going away this time but last night was HOOOOOOOOOOOOOOOOORRRRRRRRRIBLE...I did try the red bull tip, chugged it a second haha....02 for about 20 minutes and nothing..ended up smashing a Sumax (Imigran) tablet thinking maybe if it it was pulvarized haha it would absorb quickly? ( can't get Imitrex where I live) but no relief...so just waited it out for maybe 3 hours...went back to sleep and woke up again two hours later, same thing only this time the 02 worked. I am taking amytriptilne, for the last couple of weeks (100 mg a night) ....and trying to get Melatonin ( can't get it here either) Our options in my Country are limited...buuuuuuuuuuuut....the most IRONIC thing is I own a Farmaceutical Company, and import products worldwide and distribute here...but no Imitrex haha :(

I am not closed minded on trying shrooms or even lsd (have tried them before when I was younger but for other reasons) the thing is I need to read up about it.
And see how I could get some?

Am thinking about quitting the amytriptiline... it has not helped this time as a profilactic (did work two years ago) and I don't really want so many toxics in my sistem!

Soooo...at times I do feel Desperate and think I am going to looooooooooose it...but I just keep reminding myself that eventually, this will go away ( although it is hard to think that way when the beast hits)

Even thought  about travelling to the closest country where there is Imitrex...

This whole experience really does mess with ones sanity....:/

Sorry for ranting and ranting...

Blessings!!!

All I know is that in the end somethings are a bit.."funny"...I look at my room and maaaaaaaaaaaan, the whole set up is just ....randomly and tragically funny...have an 02 tank next to my bed, have red bulls and coffee (just in case) within reach...Have wet towels (cold) and some Ice Packs in the fridge... and people who come over just look and are like/...."WTF"...it is hard to explain it to someone. A couple of nights ago my boyfriend stayed over and I went out for a jog at 4 a.m, crying but jogging, (actually made it worse) I read somewhere that intense excercise helps when the beast hits.... The beast made me joooooooooooog at 4 am? Hell, looking at the positive thing I will be fit! hahah...

;)  ;)

Hope you all have PF nights and days

I laughed a lot the first night I had oxygen next to my bed because I felt like I was in hospice or some sort of old man

hahahah...I felt the same way. Funny thing is...I ran out of 02 the other night after 3 hits (My tank is small...don't really know how many liters it holds) But I do refill  it up everyday. Well, ran out of 02...freaked out, and my 84 year old grandmother uses oxygen because she has beggining of emphysema and at nights a nurse looks over her here at home, so I BARGED into her room...could not even explain anything to the nurse, and since my grandmother has a BIG TANK, (Hospital size...?) but has another smaller one she uses when she sleeps.... I hogged it....grandmother woke up and looked at me as in ..."what is she doing" so did the nurse that looks afer her...
So in between tears, and trying not to break down in front of her, just said I needed a little bit of O2... ::)

There are always tragical comedy anecdotes haha...anyyyyyyyyyyyway (sorry for my english at times, not my first language)

Hi Tiffany,
So sorry to read the  [smiley=evil.gif] is still with yoooooou.
You mentioned going down the mushroom road, have you
looked at our sister site yet, the link is to your left at the
bottom of this page," ClusterBusters "

Hoppy.

Will check it out Hoppy :) Thank you!