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Tussilago

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How to handle mid night clusters
Sep 13^th, 2012 at 5:03pm

My cluster 'time' used to be at 7 pm.
Now it seems to be around 3 am.
Fun times.

I fall asleep alright. But I wake up. Every **** night from a massive disorienting headache. I'm saying it's the CH.
I haven't yet pinpointed the exact time it is as my first thought when I wake up isn't grabbing my phone and checking the time but it seems close to 3 am.

How do other people who have recurring CH that disturb every night handle it? Mine tends to last approx. 3 hours.
And as more vunerable if I'm asleep, it's more likely to occur.

As background I've got a complex headache disorder on topirmate as preventive.

I have oxygen for CH.

The tension headache side of it my neurologist referred me to physiotherapy and a therapist.

After the daily 3 am CH to make things better I suspect that once that one gets cancelled the tension headache goes wild because it triggers on the eeh... tension from the CH. If not the migraine decides 'oh you've been stressed now i'll play along'. So I get an extra annoying little brat attached to it.

My current idea is setting my alarm to 2.40, wait out the CH time, sit ready with the oxygen, see if it's gonna hit when I'm awake, if it doesn't go to sleep at 4 am.

Anyone has a better idea? Cos this is driving me nuts.

On the + side they've managed to reduce the amount of loss of (often one-sided) movement/speech/consciouesness.
Memory is going a bit soso for me... I read somwhere that people with chronic ache can have memory issues. Is this true stuff or just nonsense?

CH running since April now I think.

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tachead CH.com Junior Offline I Love CH.com! Posts: 93	Re: How to handle mid night clusters Reply #1 - Sep 13^th, 2012 at 5:30pm Just keep the 02 handy...it may work if you use a cannula at night set at 5 to 6 lpm or even 4. It can keep the night hits away. Something to try. Many use melatonin to avoid night hits..3 to 9 mg. at bedtime. tachead
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Tussilago

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Re: How to handle mid night clusters
Reply #2 - Sep 13^th, 2012 at 5:44pm

Mine is preset to 15 lpm, problem is even though I keep it right at bed I can get too confused and discombobulated when woken up by it that I don't really get it all sorted out as fast as I should at all.

Checked Melantonin, it's not sold over the counter in my country but requires a prescription. I have Zopiclone as sleeping pill. Which helps me fall asleep fine. But well.... is there a sleeping pill that keeps you asleep through CH? Does that exist... if so GIVE ME. : p

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« Last Edit: Sep 13^th, 2012 at 5:50pm by Tussilago »

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tachead CH.com Junior Offline I Love CH.com! Posts: 93	Re: How to handle mid night clusters Reply #3 - Sep 13^th, 2012 at 6:13pm They preset regulators over there..that is just an evil trick. Wished we had a pill that could make ya sleep through an attack..that would be very popular. tachead
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Tussilago CH.com Junior Offline I Love CH.com! Posts: 47 Sweden, Norrland Gender:	Re: How to handle mid night clusters Reply #4 - Sep 13^th, 2012 at 6:22pm Haha ye imagine such a thing.... that'd be imba.
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Tussilago CH.com Junior Offline I Love CH.com! Posts: 47 Sweden, Norrland Gender:	Re: How to handle mid night clusters Reply #5 - Sep 13^th, 2012 at 6:30pm Yes, mine is set to 15 lpm and I'm not allowed to fiddle with it. It could be 10 actually. The prescription says 10 but the nurse who sorted it said it's set to 15, I don't know who of them is actually right. It's been on my to do list to check for a while now actually.
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Barry_T_Coles

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Re: How to handle mid night clusters
Reply #6 - Sep 13^th, 2012 at 10:57pm

Tussilago wrote on Sep 13^th, 2012 at 6:30pm:

It could be 10 actually. The prescription says 10 but the nurse who sorted it said it's set to 15, I don't know who of them is actually right.

It's been on my to do list to check for a while now actually.

Hi Tussilago & welcome.
Does your regulator look like on of these below.

A

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

B
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

C
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or

All three are adjustable, A&C are the pin type with B being the older screw thread type now being phased out, when you say that
"Yes, mine is set to 15 lpm and I'm not allowed to fiddle with it." probably means just that & the nurse has set it for you as most people who are not familiar with gaseous products are not aware of how to adjust the flow rates.

Hope this helps
Cheers
Barry

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Of all the things i've lost in life the thing i miss most is my mind.

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Tussilago CH.com Junior Offline I Love CH.com! Posts: 47 Sweden, Norrland Gender:	Re: How to handle mid night clusters Reply #7 - Sep 14^th, 2012 at 12:26am It's this type, but a much larger tube: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Barry_T_Coles

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Re: How to handle mid night clusters
Reply #8 - Sep 14^th, 2012 at 1:07am

Hi Tussilago

That's interesting; I have never seen that type before but it looks very portable, just screw the bottle size you want for the situation.

From your picture it looks like you turn the gas on with the knob at the left then you can adjust the flow with the knob at the top of the regulator and the gas tube attaches to the right.

Can you tell me how high the numbers on the knob at the top of the regulator go up to.

Cheers
Barry

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Of all the things i've lost in life the thing i miss most is my mind.

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sagandra

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Re: How to handle mid night clusters
Reply #9 - Sep 14^th, 2012 at 7:25am

Hi,

I have managed to push my 23.00 and 01.00 hits to 04.00 and 6.00 with melatonin 12mg. I usually get two in a row, the first one wakes me up and too late for abortion. But the second one will die because i now have o2

Mentally it is easier The more i have slept before the party start, it is also better in morning, early nights are worst, desperation kicks in.

However, i have also thought of setting my alarm for the first one, curious to know if anyone has succeeded to catch one?

xx,
Kristina

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wimsey1

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Re: How to handle mid night clusters
Reply #10 - Sep 14^th, 2012 at 8:14am

Quote:

However, i have also thought of setting my alarm for the first one, curious to know if anyone has succeeded to catch one?

Kristina, I am chronic and am used to hits at 2300, 0100, and 0300. Sometimes I sleep in between hits aborting with O2, and sometimes I stay awake after the first hit to get a jump on the others. It all depends. Neither is very satisfactory. Others have also tried the alarm trick. Again, it depends. It won't stop the hit from coming but it will reduce the lead time into the attack so you can abort more quickly. Not much joy here, but I'm glad you're thinking proactively. blessings. lance

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AppleNutClusters

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Re: How to handle mid night clusters
Reply #11 - Sep 14^th, 2012 at 5:48pm

The majority of my clusters hit during sleep, like clockwork around 3 AM. I've had to develop multiple strategies for dealing with this and still getting (somewhat) adequate sleep. Most importantly do not fear going to sleep. Chances are, you'll get the CH no matter when you fall asleep. Better just get yourself prepared before bed so that you can catch the CH as soon as possible. That means assembling all supplies, including oxygen, energy drinks, ice packs, etc. before you go to bed. Put them in the same places every night so you can grab them quickly without thought.

Every night, I make sure my oxygen mask is assembled and ready to grab. I make sure I have a Monster energy drink within arm's reach. My Imitrex injection is already assembled and ready to jab, and my icepack is already in the same spot in the freezer every night.

In short, be ready to treat your CH immediately and develop a routine so you can do this on autopilot because the faster you hit back, the easier the abort. And of course, keep working on preventatives!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: How to handle mid night clusters Reply #12 - Sep 14^th, 2012 at 6:50pm Quote: Checked Melantonin, it's not sold over the counter in my country but requires a prescription. So get a prescription.
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Imitrex4Breakfast

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Re: How to handle mid night clusters
Reply #13 - Sep 14^th, 2012 at 8:53pm

Night time attacks are always worse for me. Usually not long after falling asleep, I get an attack. They say REM phase sleep is a trigger, but I know REM sleep is unavoidable and necessary for your brain to survive.

After I get over a late night attack, I try not to think about what horrific pain I had just endured and I try to do something else or risk it and go back to sleep again and maybe do it all over again. Either way, worrying about it is not going to help me, so I try to let that part of the night go (flush it) and forget about it.

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Tussilago

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Re: How to handle mid night clusters
Reply #14 - Sep 15^th, 2012 at 2:58am

Someone help me argue for moving from zopiclone to melatonin....

I guess I could drag this to my GP... Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Btw, yesterday went to some very gentle acupressure treatment. The woman's an expert in acupuncture and Chinese medicine. Dunno if completely random but I went to bed at 22.30, took sleeping pill.

I just woke up, absolutely stunned at 9ish am. No attack... NONE during the entire night. Didn't just skip the 'worst one' at 3 am that I've been whining about in this thread. But 10 hours of uninterrupted sleep.

I'm still very tired though. BAH! But niiiiiiiiice.

Whatever the reason... I'm just gonna enjoy it.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: How to handle mid night clusters Reply #15 - Sep 15^th, 2012 at 4:05am Enjoy it, darlin'. You deserve it.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Tussilago CH.com Junior Offline I Love CH.com! Posts: 47 Sweden, Norrland Gender:	Re: How to handle mid night clusters Reply #16 - Sep 15^th, 2012 at 5:02am That's very sweet of you! Thanks
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