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Posted in Untitled on 27 Jun, 2009 - 9:55 pm

Finally‚ got my sleep study results back - I don't have apnea but i do "wake" over 30 times per hour‚ and for half the time I thought I was asleep my brain waves showed that I was awake

Very little deep sleep or REM too

Posted in Untitled on 06 May, 2009 - 7:49 pm

Hi David‚

Had my sleep study. I've got to say its hard to sleep with a couple of hundred wires hanging from your head / body

We'll see what comes back


Posted in Untitled on 06 May, 2009 - 7:48 pm

Hi Roger‚

Yep. I'd agree that correlation does not show causation but its worth investigating ...

From memory around half of the CH sufferers with apnea had a hypoxia (lack of oxygen) immediately prior to their headaches

Some of the studies showed that treatment for apnea alleviated CH symptoms

If you go with the dilation hypothesis and your explanation of why O2 works‚ a hypoxia would cause the brain to dilate the blood vessels to get more oxygen - O2 would correct the hypoxia / trick the brain and stop the CH


Posted in Untitled on 06 May, 2009 - 7:38 pm

Hi Roger‚

My understanding of the dilation hypothesis is that its uncertain - some blood flow studies show dilation _after_ the onset of pain not the other way 'round

Apparently O2 helps 75% of CH sufferers but if the cause of CH is unknown I'd suggest that the mechanism of O2 in cessation is unknown


Posted in Untitled on 04 May, 2009 - 7:20 pm

Hi David‚

Not yet. The RN who was meant to be overnighting with me called in sick with the 'flu - been delayed until tomorrow night

I think I've probably got to wait for a few weeks to get the results anyway - will keep you posted


Posted in Untitled on 22 Apr, 2009 - 7:20 pm

Spoke to my neurologist on Monday - he agreed that there is likely a link for many sufferers and based on that and some other potential symptoms recommended a sleep study which I'm doing next Tuesday night

Will keep you posted on outcome

(He also said that pure oxygen was one of the best treatments but it wasn't clear why‚ and that he'd had good success with Prednisone for shortening non-chronic clusters)

Posted in Untitled on 07 Apr, 2009 - 7:16 am

Hi MM‚

Mersyndol are high in Codeine - if that works for you‚ you can get Disprin which is 500mg of Aspirin and 9.5mg of Codeine. Doesn't have any Paracetomol

I also use tiger balm on my temple - which works for me up to about a 5 or 6

Other than that its a triptan (like Sumitriptan inhaler)‚ which work for me about 75% of the time. To me it feels less like pain relief and more like the headache dissolving

You'll need to get a script for Sumitriptan‚ though - your GP should be able to help you here‚ assuming your GP is across your condition/s

Triptans are frequently used for migraines as well. But generally migraine sufferers have an indication one is coming on and a ramp up stage to a full-blown headache so they can take tabs rather than inhalers

Your GP can give you better advice than this I'm sure. Other medications are shown in the medications tab on this site‚ on wikipedia and many other meidcal sites.

Good luck - as you have found different things work for different people


Posted in Untitled on 04 Feb, 2009 - 10:12 pm

Hi StPeter‚

Don't know - but there is some loose relationship between serotonin and CH. Alcohol is a vaso-constrictor and a histamine and for both reasons a possible trigger‚ but it also has a depressant effect‚ presumably lowering serotonin

I'm glad that hang-overs aren't any protection for me‚ or I'd be an alcoholic

Re: Rugby. Trying to decide whether to go 'round again - any thoughts?


Posted in Untitled on 01 Feb, 2009 - 6:22 pm

In addition‚ I also get ocular migraines that are apparently related in terms of the nerves affected. Thankfully they just prevent me from seeing‚ make me dizzy and fatigued

Triggers for these ones are: chocolate and intense (yeah‚ right!) concentration

Posted in Untitled on 01 Feb, 2009 - 6:14 pm

Hi all‚

All of the below relates to triggers while in cycle. Out of cycle the only way I'd get a cluster headache is with a nail-gun to the temple. The problem with trying to identify triggers is that in-cycle‚ you have about a 85-99% chance of getting a headache in the next 24 hours‚ so breathing and drinking water are highly correlated with CH

Triggers (100% effectiveness & immediate):
- Cigarette smoke

Triggers (100% effectiveness but at night):
- Red wine
- Dark spirits

Triggers (Less than 100%)
- Other alcohol
- Altitude (aeroplanes / mountains)
- Dehydration
- Glare

Possible Triggers
- Dark chocolate
- Ahh‚ sexual activity

Not triggers
- Stress
- Oranges
- De-stress
- Exercise

Posted in Untitled on 23 Dec, 2008 - 8:48 am

Hi Hefty‚

Re: coffee
At last an excuse for my massive coffee intake...

Re: toughing it out. Yeah I tell my boss and if its really bad (intensity‚ duration and frequency) I take a day off work and sleep -if its just bad‚ I sleep in (I'm a zombie post CH) and go to work late. I am much less functional and find it very hard to focus

Re: Chronic CH becoming Periodic
This is from the US equivalent site.

... On occasion‚ bouts may be as short as a few days or as long as 4 months; about 10 percent of those with established cluster tempos enter a chronic phase in which the attacks may persist for an average of 4 to 5 years (Ekbom‚ 1986)...

They have a Doctor involved in the site who also suffers from CHs

Posted in Untitled on 22 Dec, 2008 - 7:40 pm

Hi Hefty‚

It sounds like your SO has chronic CH. From my research (thankfully I've never had them for longer than 6 weeks) the CH can go chronic and the switch to periodic and back again

It sounds like he's in a bad place - and to be honest I can't begin to imagine how he feels

Haven't tried Red Bulls as Wayne has but I know that strong coffee can help. Sumatriptan is also a useful abortive (though not perfect) - inhaler works ok for me at about 80% effectiveness after 10-15 mins. There are also prophylactic medicines that stop the cluster (for periodic ones) - I have no experience with them so can't comment on how effective they are

For low grade headaches 2-4 I use Panadeine max and tigers balm to a temple

Although in cluster I get headaches no matter what I find alchohol ... esp. red wine and to some degree beer‚ spirits and to a lesser degree white wine ... makes the CH more frequent and more intense

The other two triggers I've noticed are altitude and Cigarette smoke. A very small exposure to smoke (in cluster) can poleaxe me - the rest of the time it is only a mildly noxious habit

I don't find stress to be a trigger

Yeah‚ work's tuff. The pain and the sleep interruption sucks - but the fatigue that follows a headache is hard to overcome as well

I'm sorry but I can't offer advice to someone who is chronic as all my experience is in working for someone else and toughing out the cluster

Yeah people here are nice. Not very frequent visitors to forum‚ though smile. There's a few that seem to swing by every day or so - most of the rest visit when in cluster

Being a partner
You should chat to 'lil fuzzy as she is partner of CH sufferer and I reckon its hard on the partners too. She may have some survival tips for you

Posted in Untitled on 18 Dec, 2008 - 5:44 am

Hi back‚

David. Thanks for the welcome. Yeah I got bruised ribs at Rugby once too‚ hurt a bit when I got tackled

St Peter. No my surname's not brooke - he and buck shelford are just my favourite players. Are you really a saint?

Not sure if the tolerance is adrenaline

Wayne. Yep 20 years and still looking for a good GP. Never really found a good one and I've lived in about 15 different places in those 20 years including country NSW‚ SA‚ VIC and various spots in Sydney. The last time I had CH in Sydney was in 2001/02 and I lived in Neutral Bay‚ I've since lived in Melbourne‚ Manly and now St Ives

As you point out‚ you learn a lot from these sites. Previously I've been to GPs‚ explained the pain and diagnosis and not really gotten what was needed (this is the first cycle ever that I have taken Sumatriptan). A visit to sites like these lets me know about the treatments for an attack but also the prophylactics (I'm assuming you don't wear these?). So having got the Sumatriptan (which kind of works) I want to find a GP who knows about the prophylactics so I can shorten the cycle

I think your pain tolerance in CH is higher than you know. I had a toenail that was half dead and needed to come out. Every time I tried to get it it hurt sufficiently to make me stop. During a CH 3 I pulled it out without any difficulty all I could feel was a slight tearing

Posted in Untitled on 17 Dec, 2008 - 2:21 am

Hi I'm new to the forum. I have suffered from Clusters since I was 17 (20 years and counting). Back then (and all through Uni) I got them every year for one headache a day

My clusters come less frequently now sometimes skipping a year or even two - but the headaches are happening more times per day. I'm curious‚ how many of us are left temple sufferers‚ how many right and how many alternating? I have had every cluster bar one on the left side

My other curiosity (other than physical ones) is what are peoples' tolerance to pain like? I broke my shoulder in two places once playing Rugby and didn't know it was broken until I had the XRay. I knew something was wrong - I couldn't move my arm‚ I just felt fairly minor pain. I was wondering if anyone else has developed a higher pain threshold.

The last time I used the net to research cluster headaches was in 2000 and the main support group was clusterheads in the US - so congratulations on putting this up. Not many posts though?

Anyway this one has been aborted so back to bed ...

Posted in Untitled on 15 Dec, 2008 - 5:03 pm

I actually find hard sprints (up-hill at 3am in my boxers) help abort some attacks

I find it very hard to do my normal exercise regimen during a cycle due to feelings of weakness and fatigue

Posted in Untitled on 15 Dec, 2008 - 4:47 pm

Anyone know a good GP in Sydney CBD or North Shore (Nth Sydney‚ Chatswood‚ Gordon) who knows about cluster headaches?

I am in the middle of a f**cked up four-a-day cycle‚ lasting over an hour each and find myself having to tell GPs that: intra-nasal or injectible will work better than tablets and that there are prophylactics medicines available to shorten cycle *AND* being met with resistance / ignorance

I'd go to a neurologist but I'm very unlikely to get an appointment before the cycle ends (6 wks or so)

Thanks in advance