Here we go, sorry but nobody else gets it, so I'm going to indulge myself in a little rant....

I feel like shit!!  It's like this cycle is never friggin ending... just when I think it's finished it's back within weeks with a vengence and this time it has changed. 

I've been a night hitter for the past probably 10yrs with the occassional early morning wam... and now I'm getting hit in the morning (take son to school time) and again around 3.30pm (pick son up from school time).  It is soooo frustrating. (No night time hits for a while?)

This is going to sound ridiculous but when given the opportunity I get on this board and post to the newbies to try melatonin and the energy drinks etc etc etc and I don't use them myself!!  Because my cycles have been changing so much (I've stopped using verap for this reason) I've not wanted to use anything that might change them again - especially not melatonin because I thought it might eliminate my night hits and bring on day time ones.  Well here I am.

And I kinda thought the night ones weren't so bad  :-[ because my son didn't have to deal with it, and I could handle the after effects and all (shadowing the next day).  But this day time shit is just relentless.  The knowing that it's going to happen at a certain time and the slow build up shadows - that more often than not turn into a full blown hit are just awful - think I'd rather wake in the night and jump on the 02.  Now its like I don't know whether to get on the 02 or wait (its kind of expensive for me so don't want to run out too quick - getting another bottle filled tomorrow).

Mmmmm.... sorry but it does feel better to go blah  :-/  I wish this cycle would f#ck off.  It feels like it's been going on all year!   

And finally,  didums on me.  I had a really special thing on last week (the philosophy symposium at uni) and so organised for my partner to pick my son up from school. (this has never happened before!) I was so excited, I very rarely get out and do my own thing.... sat through 9 of the lectures (clutching my head) and then had to give in and drag myself home and get on the 02  :(  I was so pissed!  I missed it last year because I couldn't afford to go, this year I was all hyped up for it and missed half the day/night because of my head.

Oh well, it could be worse.  It's just starting to get me down a bit.    That said, it is so good to have a place to come  and vent  :)   I will survive, this cycle will end (eventually) and life goes on....

Thanks for reading,

Kate

P.S.  sorry to anyone who is easily offended - I did a couple of swears  8-)

Kate, you know as well as I do that there is no where to vent except here. Glad you let off steam this morning.

I don't see mention in your post of an MD who is working with you. I know when the beast changes I am not in my right mind. A plan is a good thing to have. You know the treatments. It's a matter of taking an organized approach.

I always had this belief that there are nerve pathways involved that are dormant in remission, and active during a cluster. It's kinda like they beat a path through our nice PF grassy area. We have to get our abortive measures in place to allow the grass to grow in again. Calm that nerve pathway.

Regarding you son, my two sons had to witness this too. If you haven't already, you can sit down and talk about how you each feel during a CH, so that he can be reassured that you are OK. Generally a parent moaning means something is very wrong. And you can let him know anything he can do to help (even if it's just standing by quietly).

I have to tell you that I almost never have had daytime hits, but I was an EMS responder for years and carried oxygen in my car. That's an option. But shell out a little $$ for a carrying bag. An O2 tank has the potential to hurt car occupants, and worse. Better to have in a bag, secured with a seatbelt.

I think my sons grew up especially understanding to women because they saw what I suffered. The fact that I was divorced and their dad was amenable to being phoned at 5 am to come over and get them ready for school was another plus in their upbringing. Even after our divorce, we operated as family.

Your exasperation is understandable, and it's a common experience for CH sufferers. Especially when the CH seem to be morphing around your best efforts. I hope you get "a handle on this" (such as it is) soon!!

My last cycle went 8 months, longest by far. I was on the verge of busting, a big step for em an ex cop. I'm now a member of the clusterbusters board, educating myself as I really think that's the direction I'm heading next round.

[smiley=heart.gif] [smiley=hug.gif] Hugs and love, long cycles suck.

Joe

Vent away Kate!  For 15 years, I could count on one night hit and even set my clock by when it would come.  This cycle, I'm getting hit 2-3 times - usually 2 during the day and one during my usual time at night.  Just hoping the Verapamil kicks in quickly.

Hang in there as best you can!

Kris

Kate when faced with a never ending cycle like that I would think you're entitled to at least a couple of swears.  :o

And I wholeheartedly join you in hoping this cycle of yours will just f##k off!  :(

Kate, a couple of little swears is acceptable and covered by the Geneva Convention under the section on cruel and unusual punishment.

[smiley=hug.gif] We all need a good rant now and then Kate.  Hang in there! [smiley=hug.gif]

Thank you all so much!  There is nothing like the occasional 'there, there' to keep you on track.  Venting really does help  :P

Brian, I like it  :)

Re the mushrooms.  It is something I'm interested in simply because of the notion of no pain  :D but I wouldn't have a clue how to access and wouldn't like to get into trouble because there is no one who could take on the care of my child.

At that philosophy day, one of the speakers was talking about prohibition of substances from both the utilitarian and rights based points of view.

He was talking about LSD and mushrooms and no suprise mentioned cluster headaches!!    I had a chat with him during morning tea and told him that I was a sufferer and so had a bit of an interest.  I think it always helps to relate theory to the really world.  Anyway he said he was going to a conference in Canberra (our capital) to discuss this so I asked him to put in a word for me (us).

Thanks again for listening to me, I feel heard  ::)

Wishing everybody out there lots of pain free time and  [smiley=hug.gif]

Kate

maryo wrote on Dec 5^th, 2010 at 7:40am:

I don't see mention in your post of an MD who is working with you. Regarding your son, my two sons had to witness this too. If you haven't already, you can sit down and talk about how you each feel during a CH, so that he can be reassured that you are OK.

Thanks Mary,  I have to admit I'm pretty stubborn and VERY over seeing the neuro etc.  The last couple of years I've just been battling it out with 02 and the nasal spray when I need it.  I really don't cope well with the numerous side effects of drugs.... but if this continues I might have to have a bit of a rethink!!

Re my son (8yrs), he really is pretty good.  In the past when I've had them in the morning upon waking he's been very good at getting himself organised... and if I'm puffing away on the 02 sometimes he will lie down next to me quietly or just leave me be.  I just feel so bad when it is the weekend or straight after school and I'm tucked up in bed on the 02 when really I should be spending quality time with him. 

Such is life, for now.  I just wish I had some idea of when all this is going to end!! 

Hang in there, Kate. You know that there is research showing that swearing helps us to cope with pain so have as many swears as you like! Science says it's good for you.

I'm with you on the frustration of a changing cycle. This time around, the first month was all nighttime hits, second month as almost all afternoon and evening hits, and this month so far have been all morning hits. Go figure! We all know the beast has a nasty sense of humour.

Best wishes for pf days.

Hey Kate, sorry this is going so badly for you. You mentioned in your original post you recommend energy drinks and melatonin, but don't use them yourself. You also said (I think) you've dropped the verapamil and are exercising caution on using O2 cuz it's expensive. I was just wondering if you've reversed your decision here and begun to use energy drinks and melatonin? In my experience, the energy drinks actually cut back on abort time with my O2 which actually serves to conserve O2 thus extending a tank's life. So does a demand flow valve since I'm only draining O2 on breath intake. And maybe it's different down under, but verapamil is pretty cheap here. I know the beast morphs and what worked before may not work now, but when you're in pain, it seems to me the best place to start is with what has worked, try it, rule it in or out and then go to new stuff. I guess I'm just rambling because I feel so badly for you. I know you'll get through this, even if it feels right now as if you won't. Praying for you darlin'. God bless. lance

To add to what Lance just said, I drink a Red Bull while aborting. I'm pretty sure it speeds the abort time, and convinced it substantially pushes off the next hit. Worth a shot, and hang in there. [smiley=hug.gif]

Joe

Kate,very sorry to hear about this cycle for you. Being a newbie theres not much I can add here except support and prayers. Good Luck!!

HI Kate;I understand how you feel and wish I had a magic solution.
I'll start with... everyone reacts different to different things and we all need to do what we need to do...whatever works.But,in this case,this is my experience.
The mushroom/halucinigen story was made known to me around 6 years ago.Since i was seriously chronic, then for more than 10 years, I was ready to try absolutely anything.
So i did with guidance and special recipies from experienced cluster patients.The cure requires that you drink the mush tea more than once.However I got severly sick to my stomach and got more pain than I could ever imagine.And I already had around 14 hits a day .But of course I persevered as I was at the end so I did it again with the same results.
Had some trippy visions but the pain was too heavy.I do not recommend you try this alone especially if you have never tried these things before and definatey not with a child around.
This is from an article over hallucigenic treatment;"The hallucinogens may shock the body into resetting this imbalance or erratic release ahead of schedule. The favourite analogy is that of an old tube radio slowly drifting off station that periodically requires a sharp whack on the side to keep it in check.
When the molecules of psilocin bind to the 5-HT receptor s[i]ites which normally would be occupied by 5-HT (serotonin) molecules instead, the signal that gets sent up the axon of the affected neuron is SLIGHTLY different than the signal which gets sent when it is occupied by a serotonin molecule. One of the results of this slightly altered signal is the various psychedelic perceptions we all know and love -- auditory and visual distortions of perceived objects. But another result is that a signal gets sent to the [i]/i]hypothalamus (or whatever else it is in our brain that periodically gets out of whack and initiates a cluster cycle) telling it to "reset" itself to its normal "non-cluster" mode of operation."
So this cure works as a sort of fake seratonin replacement so perhaps the first step would be to try a seratonin suppliment these can be found in many natural forms.Then you might know if it would work.
I am not saying don't,as it obviously helps some people, thankfully,but I am saying be careful ...it's not for everyone and these kinds of treatments should be supervised and carefully executed.
PS this is just my opinion
Hoping we all find an answer...one day

Kate,

That is frustrating that your cycle is dragging on and I totally understand how maddening it can be to be greeted with a headache in the morning upon awakening.  Such a nice way to start the day! NOT!
My advice with the melatonin is I don't think it can move night hits to the day.  I stay on 6 mg every night even out of cycle b/c I think it helps me regulate my sleep (which can only help CH).
I seem to be getting rebound headaches from O2 this time around never noticed that before.  Especially in the AM after I get rid of one it will just come right back 10-15 minutes later. 
BUT verapamil is helping the past couple of nights in a row (240 mg at night which I know is not as high as many need) that along with 12 mg of melatonin and 3 benadryl at night. 
I hope you get some relief.  So frustrating especially that you got one in public--that is a disturbing experience.  My worst public CH was at a Stevie Nicks concert--but it was my fault I had some wine (I didn't realize it would trigger a CH).
I think it would really be a good idea to see a headache specialist.  Especially if your cycle is lengthening.  I hope you get painfree soon.

Hello, I've been in a similar situation as you.  I've been pf for a while, excpt once a few days ago, which in large part I think is due to melatonin.  I'm normally a night hitter, with day hits when I get bad.  I'm a little scared to say it's over, because I've thought it is so many times to be disappointed.  That being said, swear away.  I find, in my own scientific study haha, that it helps with much more than pain.  I'm very hard to offend and open minded especially when it comes to the beast.  I'll be hoping you find strength while you need it and pf days very soon!

Also wanted to touch on how awesome everyone is here!  A little off this topic but everyone has been very helpful, and generous even.  Thanks to all ya'll for what you do here!

Kate,night hitter here too,10mg Melatonin every night while in cycle. 5mg every night out of cycle.Dont know but doesn't seem like Melatonin would move the hits to the day??? A guy I know takes Melatonin at night and Seratonin when he wakes up.??? Works for him.

Again Good Luck,prayers your way.

Thanks again everyone  :)

Today I will go out and get some melatonin and redbull  ;) I'm not desperate enough to go back on the verapamil just yet - I find the fatigue that goes with it soooo debilitating.

I've been getting hit every day at least once and it felt as though I was going to get hit bad last night, but thankfully nothing eventuated, just bad shadowing.

At least the 02 works, it's just kind of getting old and a bit exhausting because it feels like this has been going on for so long now. 

Jared, I agree.  This place is absolutely fantastic!!!  A terrific group of people.  Just knowing that CH.com is here is a sanity saver.  I remember how lonely and isolated I felt and how much pain I was having to deal with before I found this place - not coping well at all.    The support and advice found here changes lives  :)

Wishing everybody pf days and nights,

Kate

Best of luck, Kate!  Just reading your post is helpful because I feel like I'm going through such a parallel situation. 
I was getting slammed with day hits & night hits hard for a few days in a row... the Melatonin as suggested by some users seems to help and now I'm in the shadow / fatigue / somewhat depressing spiral.
That in between is pretty rough.  You just don't know if it's breaking or if it's a sick joke and you're about to get slammed again.  sheer misery.

It can be so confusing and can make one feel so lost.
I feel your pain and just by reading it, it makes me feel better. less alone. less confused. and venting is so so helpful.

Hope your cycle breaks very soon!

Hey, Kate. Given all this talk of a bill of rights for Oz, wotcha reckon we work up a paragraph or two for CHeads?

Kate--

I am totally phobic about taking medicine.  Plus I am pretty old school b/c I went so long with these HAs with either nothing or just O2 due to mistreatment by the medical profession.  With the verapamil, if I take it in the morning I too cannot stand the fatigue, dizziness, etc.  But I stopped taking it in the morning and just take 250 mg at night (with melatonin and benadryl) and I am not having fatigue during the day at all.  Anyway, since you seem to be getting them in the AM which I was too (and night) just wanted to lend you some confidence that if you do decide to try it, I found that if I take it at night I am not noticing daytime side effects.  Do whatever works for you though.  I've fought these HAs with just O2 before.  Either way, it's all about what makes you feel the best about the whole thing--it's a tough game.

Hey Shuli,

I'm glad that this post has been helpful to you... makes me feel a little less selfish and self indulgent.  We are not alone!!  :)  I hope you get a break soon too!!  As much as we can manage it with 02/meds etc after a while it does get a bit oppressive.

Brian, I'm keen if you are  ;)

Starlight - thanks for the tip re verapamil.  I'm going to hang off a little bit longer and see how I go, but knowing your experience has definately got me thinking.  The fatigue (and extended cycles???) is the only reason I resist it - the fatigue and dizziness are outrageous!!!  I'm pretty tired and vague at the best of times, but the verap really pushes me over the limit  :o

Thanks again everyone for your words of support!

Today I didn't get any hits or shadowing at all - which is the first time in a while.  Did get the burning sensation in my temple around 3pm so sat on the 02 for a while before I picked up Jules from school and thankfully it seemed to do the trick!!

Take care everyone,

Kate

Don't want to jinx myself here but maybe, just maybe the cycle is over.  Haven't had any shadowing or hits for the past 5 days!!  Not ready to have a drink to celebrate just yet, but Christmas day is looking good!

Thanks again everyone for your kind wishes and support!!

Kate

BTW went to my local chemist to get some melatonin and they didn't have any other than with a script.  They did say I could get some in town... so next time I will most definately give it a try!

Fingers crossed and crossed for you. God knows you deserve a break! Keep us posted and vent away whenever you need!

I am so happy you seem to be getting a break!  Especially with Christmas coming--who wants to get a CH the night before Christmas!

I'm still somewhat of a newbie. Only 2 "documented" HAs in 2 years (in cycle now), so I'm still experimenting. I'm on Topiramate (100mg daily), O2, and I always have my sumavel shot handy and lots of Monster Lo Carb. I agree, wether it's Red Bull or Monster, it not only knocks out the HA for a few hours, when it does creep back up, it seems to be less severe for the rest of the day (next day is a different story, of course, so I buy by the case). I also buy generics for everything, which has helped keep costs down. In the US, Wal-Mart has a pretty good pricing structure for generics, and I buy 3 months at a time to save even more. I belong to a warehouse club where I buy my energy drinks to save even more.
My kids, especially my 6 yo son is getting used to my "clusters", and this second round is very unpredictable, as I get hits mid-day, during times of high stress, at night, whenever. The first time was very regular, every day, started at 7pm, ended at 9am, hit a high around 2am. Now, I never know what to expect. A deer almost hit my car the other night, while my son was in the car with me. By the time I got home, I was so agitated from the scare, I couldn't see out of my right eye and my CH was in high active mode for the night. If I was out of cycle, that wouldn't happen, but in cycle......
Keep your head up and keep hoping it gets better. If you want to conserve on O2, and you are physically able I recommend exercise. I often hit the bike or treadmill or outside for a run or brisk walk. It's amazing how each deep breath brings several seconds of relief as I chug along, even if it's only temporary. Maybe it's mental, maybe not, but it's always worth trying something different.
Remember Einstein's definition of insanity: Doing the same thing over and over and expecting different results.