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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 1 week 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 week 1 day 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 Trustee
Dorothy Trustee's picture
Last seen: 15 hours 36 min 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.




Dorothy (Trustee)

Wed, 24/08/2022 - 21:55
DavidH 7
Last seen: 5 months 5 days ago
Joined: 26/02/2014 - 15:13

My initial Cluster Headaches are usually around 0100 in the morning - yeah, around two hours after falling asleep.  I've definitely gone through periods of dreading going to sleep because I've known that the Cluster Headache is going to happen (though strangely I don't recall this stopping me sleeping).  The timing of the headaches changes over time (and with treatment).  I'm exhausted by the end of my episode.  If working, it might be worth considering some kind of risk assessment - I stop driving while in an episode due to the tiredness.  I think my episodes are preceded by hideous insomnia, too.  


Thu, 25/08/2022 - 21:58
John S
Last seen: 8 months 1 week ago
Joined: 26/02/2014 - 14:41

I am an episodic sufferer. When my Cluster Headaches are at their worst I start to get woken in the night by attacks. To prevent this I take a 50mg Sumatripton tablet just before going to bed and I then have a good nights sleep. Generally a tablet gives me 7 hours pain free.  We are all different and it may not work for everyone. 

in the day I use O2 so the one  triptan at night is not a problem in terms of the maximum allowed in 24 hours.  

There have been no formal trials in the use of Sumatriptan tablets as a preventative which is why you don't see it as an approved treatment. 



Sun, 15/01/2023 - 12:21
Last seen: 6 months 3 weeks ago
Joined: 03/12/2020 - 11:36

Hi Andy,

Very sorry to hear you are in this situation where sleep is all but impossible and the exhaustion is all enveloping. Having refractory Chronic S.U.N.A. and going years with no break and  little sleep, I was lucky enoughto have surgery, which was lets face it, was a no brainer. All I can offer is that if you have the offer of surgery, please seriousely consider it. Some times we just don't have an option. I hope you manage to get some relief soon.

Mon, 16/01/2023 - 09:43
Last seen: 3 months 3 days ago
Joined: 21/12/2015 - 07:21

Hi Andy,

I suffered just like you, I became a zombie, couldn't work, drive or do anything that required thought or dexterity. I'm now on a heavy dose of Verapamil which has stopped them in their tracks so far (for the last 6 years). But whilst i was having the headaches they were 2-3 times a night, oxygen didn't do much but Sumatripten injections stopped a headache comeing on. I'd wake up at 1 or 2 in the morning with a headache getting ready to torture me, jab in the epi pen sumatriptan and with 5 mins the headache was gone and i'd get a full nights sleep. They worked so well until the Verapamil did its thing. I now have a stock of injections for when they come back. Its not easy to get them prescribed as they are really expensive.

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