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HELP! Sleep Deprivation

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#1 Sat, 02/04/2022 - 03:58
Andy's picture
Last seen: 1 month 2 days ago
Joined: 07/12/2020 - 09:49

HELP! Sleep Deprivation

Hello, i am Andy, long time sufferer of Cluster Heasaches, i was diagnosed May 2014.

I need much needed advice and my question to the group is "SLEEP DEPRIVATION" one of the main triggers for my Headaches is laying down and going to sleep, after as little as two hours i wake up with an attack and there bad. 

At the time of writing this i am almost approaching a 9 week continuous cycle of headaches, the longest cycle i have had is 16 weeks, i can't sleep full stop, yes i am tired and i want to sleep and i can sleep if i want to but just not in my own bed as laying down triggers my attacks, i generally get by just cat napping on my sofa in an upright position. I am always feeling lifeless and disorientated and suffer from regular falls as i cannot maintain my balance.

Is there anyone else in the same situation or may have an answer for a solution to get more sleep, my GP will not prescribe sleeping tablets.

I am at my wits end and my quality of life is now about zero, i am getting to the point where i just want to give up and end it all, i am pretty much housebound due to another neurological condition that i also have to live with.

Thank you for listening...

Tue, 05/04/2022 - 15:00
Last seen: 1 month 1 week ago
Joined: 26/02/2014 - 17:02

Hi Andy.

Yes, REM sleep is a common trigger during a bout. Cat-naps and sleeping with my head & shoulders raised is the only way I get a modicum of sleep. I'm pretty sure the sleeping problem is one of the main reasons CH is a disability.

There are many triggers, as well as sleep. I found heat was also a major one for me, so I also get to torture myself with freezing cold water when an attack wakes me in the early hours. Although keeping cool during the night can buy me a little extra sleep, with the risk of hypothermia and shock, I do not recommend either of those.

The cold is a trigger for some too, we're all different.

There used to be a triptan that could offer up to a week's break, but it's affect greatly diminished with each use, sorry I don't remember it's name.

I've survived some long, heavy bouts with sleep deprivation, and, although quality of life during such times is almost zero, I get it back after the bout ends.

Good luck.

Fri, 08/04/2022 - 15:25 (Reply to #2)
Dorothy's picture
Last seen: 19 hours 54 sec ago
Joined: 19/02/2014 - 10:16

Hi Andy (and Phil)

I really sympathise with you about not being able to lie down to sleep. I thought I was going mad in the early days (many moons ago) until I heard of others in the same boat as me.

The tablet Phil mentioned is frovatriptan (Migard). It stays in the body for 26 hours and if you take it half an hour before bed it can give you a good night's sleep. It would be worth asking your GP if you can have them. They're great for travelling and have saved many a holiday for me. However, you do have to be careful not to take too many as they lose efficacy over time. Don't forget that they count towards your two a day triptan allowance. Melatonin is another tablet that is supposed to be good to help with sleep but I haven't tried them myself. 

Good luck.




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