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Posted in I am still here--long time no speak on 03 Oct, 2013 - 8:25 pm

Hi Heather, Just wanted to wish you well - I haven't been on here in a while (probably more than a year) but your messages to everyone were always so encouraging when I was suffering so I just wanted to say I hope your days get better soon iconicon

Posted in Something weird I noticed on 07 Jun, 2012 - 9:32 pm

I've only had one CH all year and that was a couple of days ago, weird. Very very very happy about that though after a few awful cycles in my lifetime (nothing compared to what I've read though) ...anyway. I've just had a cold and for some reason my non-CH side has had loads and loads of snot (sorry if thats TMI) all the time and my CH side is having hardly any. As in I need 2-3 tissues for one side and the other is literally the tiniest bit. How weird is that as when I have a CH my nose is like a tap. Not sure if its related to anything but just putting it out there...

Posted in BACK AGAIN on 15 Mar, 2012 - 9:20 pm

good luck Loagz hopefully you find something that helps smile

Posted in still here... on 15 Mar, 2012 - 9:18 pm

hey guys I'm still around just try not to come on this page too much because its too depressing. Really getting anxious as its now march and nearly CH time and I'm no longer breastfeeding/pregnant and I'm so not looking forward to next month as I think I'm going to be nervous every night going to bed as March/April/May is when they've started before. I just want to cry thinking about it sad I prefer to live in denial when I'm not getting the headaches and stay off the page and just pretend I'm normal but I'm drawn back occasionally to read your stories and know that i'm not alone!

Posted in Nines ACA on 02 Feb, 2012 - 5:44 am

I really like the idea Matt for the Not for Profit organisation. I was just thinking this morning there NEEDS to be a 24 hour hotline which specialises in Cluster Headaches - I really appreciated when Tweed hospital told me to ring Murwillumbah that Mur'bah actually put me through to an emergency department nurse who had seen a regular patient who had cluster headaches and understood a lot about them. It is such a relief to have someone know and understand the pain you go through who can give you immediate ideas about what medicines to try while you wait forever for the neuro.

I'm happy for my posts to be used. I am a 26 year old mum of 2 children - not on any kind of disability pension. I have been looking for work the last 3 weeks and might even have a job starting next week as I had 2 job offers last week but can't get the daycare on those days so need to negotiate first. I haven't told either employer about the headaches. I will be casually employed so if it's a big deal I'll just leave. I'm pretty normal 7-8 months of a year, just the 3-4 months where I get these headaches are hell. My knowledge of CH isn't great though so in that respect I would be hopeless and would not want to jeopardise the cause. I just want you to know that your idea has some support smile I also live on the Gold Coast/northern NSW border and I'm sure if you're concerned about having a dole-bludging kind of spin on the story, it'd be pretty easy to find one with someone living near the beach!!

Good luck!

Posted in To all the Moderators.THANK YOU on 15 Dec, 2011 - 9:58 pm

what they said smile

Posted in Inverting the head, a.k.a. The vampire bat treatment on 15 Dec, 2011 - 9:55 pm

oh wow that's incredible, I'm definently giving that a try!! I'm still (yes I know, I know for those who have seen me on here for a while) nursing my baby (ok toddler) and so I can't take many drugs for the CH and so I'm really interested in alternative ideas. Thanks will give that a go for sure!!

Posted in Don't Let The Beast Rule Your Life on 15 Dec, 2011 - 9:44 pm

good luck and what great advice peter gave!

Posted in Live Chat on 15 Dec, 2011 - 4:16 pm

haha who are you avoiding! I'm hardly on here, I have 2 kids under 3 plus my own online business a hubby to keep happy and a house to run (and starting work next month too) so live chat may not be my thing but for sure if I had no kids I'd be on there every time after I had a CH to get support!! It would be awesome.

I'm back here as I got a CH again today for first time in months. Hope it was a freak one and not the start of another cycle. I'm trying not to think about it, too depressing if it all starts up again - I need a longer break!

Posted in hack on triplej facebook page on 29 Nov, 2011 - 2:03 pm

hey guys I added cluster headaches as a topic on hack on triple j's facebook page to try and improve understanding and knowledge about them in the general public. I know he already covered them earlier in the year but hey can't hurt to try - so please vote xx

And yes still around, CH free still atm - enjoying the break but have a few shadows occasionally that remind me of what I'm in for next year and just thinking about it is depressing so I try not to think about it too much.

Posted in The answer ive been looking for? on 28 Sep, 2011 - 5:26 pm

I'm also a mum - good luck - its not easy getting any kind of illness/sickness/even a regular headache when you have children because there is no rest whatsoever when they're little except when they're tucked in bed at night and even then you have miles of washing, dishes, etc to do. Really hope for your sake that it isn't CH and that you get some relief soon!

Posted in Untitled on 28 Sep, 2011 - 5:09 pm

not that I noticed!

Posted in Untitled on 28 Sep, 2011 - 4:59 pm

wow that can of V is interesting idea! Sorry to hear your story, reading this forum is bittersweet. It sucks to read the storys of people who are worse off because you're like dear God can this possibly get any worse. But its good to know that you aren't alone. Most people don't understand and I'm still trying to make peace with that myself. Glad you've found a good doctor and good luck, how long do your cycles last?

Posted in yay back to "not currently suffering" on 28 Sep, 2011 - 4:53 pm

FINALLY!! I've been a while without a CH now and feel its safe to say the cluster cycle is over! I cancelled my November appt with the neurologist and booked it for next year in mid-May. A tad pessimistic of me but prefer to be prepared if they start back in March/April as the weather gets cooler. I'm going to *try* to keep on popping on and reading what everyone's up to but been busy catching up with the neglected housework (baskets of ignored ironing, walls that need scrubbing thanks to grubby hands, etc) that's caught up on me while I was getting the headaches and shadows all the time.

Posted in Sleep Apnea for all! on 28 Sep, 2011 - 4:46 pm

sorry meant to say I don't snore and hubby has sleep apnea and its pretty obvious he'll do a loud snore and it'll be ages until he breathes again and he does this loud crazy gasping for breath and then back to snoring. :S

Posted in Sleep Apnea for all! on 28 Sep, 2011 - 4:45 pm

that is very interesting, pretty sure I don't have sleep apnea though - I don't snore. I do find I wake up feeling like the room is extremely stuffy though if I'm waking up to one starting.

Posted in The latest for me... on 31 Aug, 2011 - 8:28 pm

thank you both for your reply, Heather that's a good idea about the taxi and I can't get in to see the specialist until November which at first I was happy about as that seemed fairly soon now it seems a long time away!

But I think my cycle is nearly over as I'm getting them now in the day and that happened at the end of my last two cycles. I really can only hope they're nearly over!!

Thanks Ben, wow that was very thorough! I have no idea what's in what medication I just take it. The dr didn't give me imigran as a table but as a nasal spray is that the same thing?

Still breastfeeding anyway so still can't take imigran anyway. Tried weaning my son the other night and he screamed for two and a half hours until I gave in! Poor guy was devastated! He apparently has to be completely weaned until I can take it, not sure why as surely the stuff would be out of my system eventually but anyway can't see a specialist for a few months.

I think for now while occasionally the panadol rapid/aspalgin works that I'll keep it going until he's weaned - not sure why it works for me Ben as panadol rapid on its own doesn't? But I am taking it in hot water now rather than cold water. I tried Panadeine Forte (so even with more codeine) but to no avail or it took like 45 minutes to give me any kind of relief and by then the headache was going on its own anyway.

Anyway I'm over thinking about pain relief, just a bit depressing... would much prefer a preventative!! Actually I'd prefer no headaches at all!!

I'm back seeing the original GP who first diagnosed the CHs and he wants to do a "thorough neurological examination" whatever that means. Hope he doesn't think I've lost the plot!! :S

Posted in Quit SUGAR! on 29 Aug, 2011 - 3:19 pm

Don't say that !! I love sugary foods!! icon

Posted in The latest for me... on 29 Aug, 2011 - 3:11 pm

thanks Heather no I haven't as I've never been to hospital when the attack is at it's peak as my headaches usually come on at 3 in the morning and hubby won't take me as that'd mean waking up the kids and taking them with us to hospital as we have no family near by. It makes me really upset but I'm kind of powerless as I can't drive myself!! He's convinced they'd be gone by the time we got to the hospital and that the oxygen wouldn't help much. I got really angry at him last time for not taking me so we went the next day as I wouldn't give it up, I wanted help fast so I'd be ready for next time!! I am hoping he'll be more willing to take me next time after the fuss I kicked up last time. My cycles have never lasted this long thanks to babies so this is really a first for us.

Thank you for your reply you're very sweet!!

Posted in It's back with a vengence on 29 Aug, 2011 - 2:55 pm

I agree with what Heather's saying about deferring study for a bit... I've had to make the same decision for next year. I'm too exhausted mentally with being a parent and I also work for myself at present but I don't have employees and my role is much more flexible. I have actually eased off my workload as well until this cycle of headaches is over.

I like what Heather is saying about her mantra for pain, I think because I've just had two babies that I'm able to deal with the pain so much better than before children. Not saying its less painful but my head is in a better space to deal with the pain. Well until it hits the 9-10 that is, then all my "I'm ok, I can deal with this, I'm not having a brain aneurism, it will pass, etc" ... everything goes out the window :S

I hope your g/f understands soon, my husband really is my rock when I'm getting a CH. I often wake him just because I want his reassurance. We did have our moments a few headaches ago, he wouldn't take me to hospital because he couldn't see what good it'd do - I guess it's discouraging when nothing's working. Maybe send her to the forum to check it out - but its a two-edged sword being on here. Its reassuring that you're not the only one but also depressing reading the stories and thinking dear God it could get worse!?!

Posted in The latest for me... on 20 Aug, 2011 - 3:05 pm

yep still around and still getting the stupid headaches. The hospital gave me a new concoction to try in the meantime till I get into the neuro - 3 aspalgin and 2 panadol rapid dissolved in hot water. You have to take it at the VERY start of the headache coming on. The pharmacist said that he'd say only take 2 and that 3 would be a big stretch (so I went with the 3 that the hospital recommended) but he agreed that was recommended for CH and to give it a try. He said that if you didn't take it within 5 minutes of it coming on not to bother. It did work the other night but missed the beginning - I am so tired with the kids I often wake up at the 4-5 mark pain-wise and think oh crap and by the time I've got the baby in the cot its nearly a 6 pain-wise and escalating fast- anyway this morning it didn't get to a full on 10, only stayed at a 5 - I've had a lot lately that haven't been as bad just stayed around the 5 mark. Had an AWFUL one the other night/early morning, full 10 and far out it was awful. I am so over this sad at least I know this cycle will be over soon, it has to be!! I'm so grateful I have my kiddies that keep me positive, I'd be so depressed otherwise!

Posted in CH gets a mention in mainstream media at last! on 20 Aug, 2011 - 2:56 pm

I feel terrible for the guy because I know exactly what he's going through but I'm so relieved that it's getting some attention. It is so frustrating that no one except my husband understands my pain (and you guys of course) but most people say "oh yeah I get migraines" ... "I get really bad sinus headaches too" etc. I'm in a cycle atm and I will probably literally scream at the next person who is stupid enough to say this to me. I'm so emotionally drained as this cycle has been so different and so much more often - after such a wonderful break in pregnancy and early breastfeeding to be slammed with all these headaches on top of caring for a one and two year tired!

Posted in Chronic Pain as a recognised condition on 20 Aug, 2011 - 2:45 pm

wow your story made me cry, it is so hard to feel so powerless to this pain... wishing you, your wife and your family all the best in this time.

Posted in Pituitary gland question... on 11 Aug, 2011 - 12:37 pm

thanks everyone, I'm back because the headaches are back but I'm able to see a specialist in Brisbane in November - so thrilled I got in so fast. My GP says she understands but laughed when I read out the medicine list that they suggest on here saying it was too strong. So I am leaning towards thinking no she doesn't understand!

I am now using the CH diary tool on here which will be helpful when I see the specialist - trying in the meantime to take better care of myself - with a one and two year old this can be hard! But necessary!

Barry I like what you suggested about telling people about your faulty hypothalmus as I find when I tell people I get CH they do the - oh I get bad headaches too sometimes, etc.

I am having another blood sugar level test done in the next few days and will see how that goes as like I said I'm getting the headaches again sad

hopefully this cycle is short! I already feel down just knowing the cycle has started again so soon... just hoping it stops in summer like usual!

Posted in Circadian Solstice??? on 08 Jul, 2011 - 10:01 pm

I have only had one CH episode in summer - and it was in the daytime, the rest in winter usually at night. I live on the gold coast and have tried stayin in the sun for at least an hour a day.. no luck.

I nearly always (except when i've had a ch in the day) been woken up from dreaming feeling a ch coming on...

I always feel down when getting CHs, like a constant low mood. I think its lack of sleep. I always feel a lot sadder/lower in winter though even before CHs.

Posted in Pituitary gland question... on 08 Jul, 2011 - 9:54 pm

ok so nothings working and i'm still in denial there has to be some kind of cause mode again... and lat time I wrote that a blood test said that I had abnormally low blood sugar levels - this is a huge trigger for me too not eating regularly in the day. I find if I wake during the night and eat I'm much less likely to get a CH.

So ignoring my mum to see a physician/neuro because it seems like no one has any luck anyway... and I google (go dr google) low blood sugar levels and find it can be caused by a weakened pituitary gland and so i google pituitary gland cos I dont know what that is and read "The pituitary is functionally connected to the hypothalamus" amongst the jargon... now isnt ch linked with the hypothalmus??

So maybe mums right and I should see a specialist??

Posted in lucky one on 26 May, 2011 - 4:29 pm

I'm also "lucky" in that I get big breaks too but am in a period of getting them again after 20 months break. Getting lots of shadow headaches too atm, not 24/7 maybe 10/7. They're annoying though. Hope you don't get any more CHs.

Posted in Untitled on 17 May, 2011 - 9:48 pm

really like this quote from saintpeter... "if we keep educating ourselves we're generating Hope, and that can't be a bad thing. "

- but on topic mine started at 22 i think
- left handed, clusters only ever on RHS
- smoked/drank up mostly in my late teens, not anymore
- my dad smoked when mum was preg
- hurt my back at work when i was 21
- A+ blood type

I have been very curious about this too - is there just one thing that links us all.... not likely it seems

Posted in do you feel scared in the day... on 17 May, 2011 - 9:15 pm

Just wondering if I'm the only one. I feel so scared in the day thinking about the night time ahead and hoping and praying that I don't have get a cluster headache tonight. I'm procrastinating going to bed atm out of sheer fear of getting a CH. I didn't have one last night and I think that makes it worse because I know my odds are even higher or getting one tonight as I'm going through an episode of them atm and that's just depressing.. hope this will all be over soon icon - this seems like quite an academic forum but I really need a place to vent where other people will understand so hope you don't mind me posting here.

Posted in Untitled on 17 May, 2011 - 9:06 pm

I just read this and I have two children myself and I cannot imagine my children going through these headaches. What a cruel amount of pain for such an innocent child, I will pray for him. How did you find out?

Posted in Been reading... on 17 May, 2011 - 8:59 pm

oops I posted in the wrong spot not sure how to move this now

Posted in Been reading... on 17 May, 2011 - 8:57 pm

Been reading other people's posts and wondering why (except that we've moved 5 times since being diagnosed with CH). I've been put on such tame meds for pain relief. What a freaking joke that there's other pain relief out there, makes me so angry. Can you tell me does anything actually work from blocking the CH mid-attack? And what is the best meds for these shadow pain in the temple/eye throughout the day ir anything at all. At present I try and take nothing during the day anymore because I want to build up my pain threshold so that when I do get CHs they're not as bad. Currently it's not working icon Anyone recommend any good doctors in Brisbane/Gold Coast who deal with cluster headaches as I live southern Gold Coast. Thank you.

Posted in Lauren - XxLovePeaceXx on 15 May, 2011 - 8:21 pm

Hi, my name's Lauren - LovePeace, I think I joined up a few years ago when I first got these headaches but can't remember my username. I am a 26 year old female, married, mother of two littlies. I have been extremely fortunate to have had 20 months break from these headaches - well actually two, 20 month breaks and in between the breaks there was only 3 weeks of CHs. Prior to that I had about 5-6 months of headaches.

Let me start from the beginning, (sorry for the essy) I first got the headaches in June 2007 - colder months - in the early hours of the morning. I seriously thought I was dying from a brain anneurism or something, even said goodbye to my husband. I had a week of these in the night and begging/pleading with doctors for some kind of pain relief until I was diagnosed with cluster headaches thanks to a great GP who rang me up at work and said come to my office this afternoon I've worked out what your headaches are and we will try and get you some pain relief.

I fell pregnant in December 2007 and voila, headaches gone. I breastfed my baby and didn't get my periods (sorry guys if thats TMI) back until she was 10 months old and then in the days before I got my period - CHs back. SH*T!! It was October this time so not as cold. Anyway after begging and pleading with my husband, up the duff by the time my daughter was one and hey presto, no headaches for another 20 months (breastfed this baby too). But bub is now 10 months old (body clock's a bitch) and I haven't gotten my period back because as soon as I got my first CH I went straight on the pill (not sure if that's healthy but anyway its an experiement I'm doing with my doctor).

I've had about two weeks of the headaches now, sorry to be a whinger as I know you have all been suffering for these years where I've had a blissful holiday from them. It's just so hard as mine tend to come on around 3am (although some at 5:30am which was odd ), I'm already up a lot at night with my baby and my toddler still wakes some nights. So I'm running on lack of sleep, thankfully whenever I get the chance to sleep I'm out like a light.

I am very lucky I only get one a day and in the past fortnight have had probably 9-10?

I'm more focussed on prevention rather than pain relief, as I haven't had that many yet and I'm in the deliriously optimistic hopeful stage. DENIAL!!

Here's my pattern, waking up with bub around 12 and being really hungry and dizzy, drinking some water but can't be stuffed going downstairs to get something to eat so go back to sleep as soon as I can because I'm so desperately tired, by 3am I find I'm usually in a deep sleep and dreaming when I will start coming into a lighter sleep and feel the headache coming on. I panic and grab whatever pain meds I can find around the place that I've been prescribed (only light weight stuff here - Brufen) it does jack-all but better than doing nothing. I go outside and try and breathe deeply, usually throw up from the pain. I try NOT to sleep through it which I was doing because it makes the attack last longer.

Pain is only ever on the RHS (I'm left handed too btw) . Hurts to even touch that side of my head during/after. I get pain in my teeth even sometimes and like a buzzing feeling in them, nerve pain? My temple/eye is agony and my eye is always watery and my nose is stuffy and running. I find it hard to open up the eye on the side that's sore. I do experience the shadow pain throughout the day, what a tease. Kind of like I'm here, guess what's gonna happen tonight. No shadow pain when preganant/early months of breastfeeding.

OK so here's what I'm up to with the doctors, she is convinced that there's a cause to it so just had a full range of bloods. I had unusually low blood sugar, she was actually quite concerned because I'd eaten a fair bit prior as I was depressed that I was going to have another doctors appointment and probably get nowhere. Anyway so she found somewhere apparently a link between that and CH so I am supposed to eat regularly including waking at night to eat. I have eaten the past two nights and been headache free but that's the bitch of these headaches, you think you've found the "cure" and then you'll get another one and you're back to square one as I remember from my first initial 5-6 month block of them.

Other things I've tried to prevent these headaches are Ural for the increased sodium and another doctor suggested regular panadol osteo - 6 tablets a day. But on the pill atm (Microlut) and now will try the low GI diet that my doctor suggested. I don't know if weight is a consideration but I have always been pretty average weight wise when getting them, yo-yo'd a bit with the kiddies but 1st lot of clusters was 67kg, second time 60kg and this time 66kg (and going down hopefully).

I know it seems like I'm randomly stabbing in the dark for answers but I am, desperate and hopeful. That's the other "side effect" it seems of these headaches, I become incredibly disorganised and find it hard to concentrate, stay on topic, etc. Might be the lack of sleep though and the kids causing that!!

And yes I used to get a lot of restless leg syndrome, particularly going through puberty but I'd have some nights where it'd drive me insane, I'd be on the exercise bike at 1am riding for hours to try and stop it so I could sleep. If only RLS was my only problem!

So its either find out how to prevent these headaches or have another baby and get another 20 month break.... wish me luck, cause I love my kiddies but another baby isn't really on my to-do list atm....