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position-specific triggering of CH? (Read 1819 times)
caminho
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position-specific triggering of CH?
Apr 12th, 2015 at 3:54am
 
For many years now, I have realized that my CHs can be triggered by sleeping on my left side (the same side I get the headaches on). When I'm not having a CH episode, that's actually the side I sleep best on, but during and episode I have to avoid that side entirely or I'm guaranteed to get a headache. Of course, during an episode I'll often get them anyway, no matter what I do. But even if I'm on my prophylactic meds, and wouldn't otherwise get a headache, if I sleep for a couple of hours on my left side, I can pretty much guarantee myself a headache.

I have done some searching of the site -- and of the published literature -- and I haven't been able to track down much info on whether others with CH seem to have the same effect, or whether I'm somewhat unique in this. I also know a lot of people saw Ear, Nose and Throat doctors and had multiple surgeries before finally being diagnosed with CH, and that most surgeries didn't help. I, too, saw and ENT, and CAT scans showed a bone spur that nearly closed one nostril and pushed septum off to the other side nearly closing the other. But since the ENT was convinced that didn't explain my headaches and (more importantly?) my insurance at the time wouldn't cover any nose surgeries, they sent me away saying I probably had "some sort of migraine." That was actually helpful, since my reading up on migraines led me to find a link on wikipedia to CH, which led me to finally self-diagnose, then to finally real solutions that deal with my headaches.

So, long story short, what I'm trying to figure out is if others of you have found that sleeping on one side or the other can trigger headaches? It seems like (*seems* being key here) fixing my nose might fix that, but I frankly don't know that I'd trust what and ENT would say on that count, so I thought I'd see if anyone's had experience on this. I'm not expecting surgery to fix the CH, but just maybe to cease whatever this positional triggering is. Fewer CHs would be nice, as would being able to sleep on both sides... And I now have very good insurance.

In case anyone wants more detail on my CH [warning: boring medical details to follow you can skip if you want]: Started having them in late high school as episodes of a few weeks at a time. Always on the left side, severe pain behind the left eye, 20-45 min at a time, with lots of tears produced, pain sometimes reaching a 9 or 10 on "regular" pain scales. I usually went 6 months to 2 years between episodes, and episodes are usually triggered by lack of sleep and/or stress. Finally diagnosed with CH at around age 30, and have had three episodes since (I'm currently 35). The first episode was killed with Verapamil (120 mg), using Imitrex injections for breakthrough headaches. The second time, the Verapamil wasn't doing any good, so the (very unknowledgeable) GP recommended Topomax. Research coincidentally backed her up, so I tried it, and it worked, at 50 mg/day. My current episode has been the longest ever, now going on 11+ weeks. I've had to ramp the Topomax up to 150 mg/day, and still have occasional headaches. I'm now living in the Middle East, and I can't even imagine the headache (no pun intended) of trying to get a prescription for medical Oxygen. But then, injectable Sumatriptan isn't available either. Fortunately, I work in a research lab (I'm a biochemist), so I've used the available Sumatriptan pills and formulated them as injections, which seems to work, though it makes my wife nervous Wink. Oddly, while on Topo, I've noticed that my breakthrough headaches are much different from "regular" CHs in that they last *much* longer, but never reach the same level of intensity as regular CH (if untreated w/ a shot).
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maz
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Re: position-specific triggering of CH?
Reply #1 - Apr 12th, 2015 at 4:26am
 
Hi, It doesn't seem to make any difference to me - not that I've noticed anyway. I would imagine it would be very difficult to control ayway, as you turn over in your sleep and don't know you're doing it. But who knows. I will try to be aware of how I am lying when I get woken to see if there is a pattern but usually in too much of a panic to take much in.
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Bob Johnson
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Re: position-specific triggering of CH?
Reply #2 - Apr 12th, 2015 at 3:10pm
 
Several years ago we had a run of reports about posture as a trigger for Cluster attcks. Don't recall the specifics but there were enough reports  posted to suggest that this is not unusual.

During the peak of my Cluster years I had to avoid sitting in a chair which put pressure in the area of the kidneys. Finallly learened that jumping up at the first hint of pain wold break the progression into a full attack.
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Bob Johnson
 
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Mike NZ
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Re: position-specific triggering of CH?
Reply #3 - Apr 12th, 2015 at 4:01pm
 
Bob Johnson wrote on Apr 12th, 2015 at 3:10pm:
Several years ago we had a run of reports about posture as a trigger for Cluster attcks. Don't recall the specifics but there were enough reports posted to suggest that this is not unusual.


I remember this, some people found that during their cycle that sleeping horizontal was causing more CHs but sleeping in a recliner resulted in a lot less. I'd give it a go and see what works for you.

Another possibility is that it isn't the position but something else like the outlet from an air conditioner or something that is blowing over you in one position but not another? Does the sleeping position still impact you in a different bed?

As for oxygen, quite a few people have used welding oxygen as an alternative to medical oxygen.
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BobG
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Re: position-specific triggering of CH?
Reply #4 - Apr 13th, 2015 at 6:25am
 
I'm also a left sided clusterer. I try never to sleep left side down. It doesn't just 'seem' like a trigger, it is a guaranteed trigger. I also like a fat pillow to elevate the head, that 'seems' to put off the attacks until later in the night so I can get a couple more hours sleep before the attack begins.
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AussieBrian
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Re: position-specific triggering of CH?
Reply #5 - Apr 13th, 2015 at 7:52am
 
I'm a rightie and always aim to sleep on my right when in heat. I think it helps.
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Hoppy
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Re: position-specific triggering of CH?
Reply #6 - Apr 13th, 2015 at 6:38pm
 
I'm a righty, and always sleep on my left side, in the
43yrs I suffered from CH's, I can count on one hand
the times I got woken during the night by the beast.
I've also read bye propping yourself up with pillows
can also help in getting a good nights sleep.

Hoppy.
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Traveller
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Re: position-specific triggering of CH?
Reply #7 - Apr 15th, 2015 at 7:17am
 
Just like you - lefty, and sleeping on the left side pretty much guarantees a hit.  From time to time I have intentionally done this to get the hit out of the way early so that I can get a good night's sleep afterwards.
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chopmyheadoff
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Re: position-specific triggering of CH?
Reply #8 - Apr 16th, 2015 at 4:36am
 
Im Chronic and have just finished a bad "right bout", and gone straight into a "left bout".
Interestingly, the left ones always seem a little worse, in that the pain is a bit more "sharp" is the best way to describe it.
However , the attacks are always a little less "dirty" on the left so its swings and roundabouts ..

Anyway, back to the point, yes - I most definitely agree in that if I sleep on the side my clusters are currently on, then an attack comes much sooner than if I don't !

The beast certainly is a strange thing.
I wish someone would hurry up and find a cure. Im at my witts end with this new bout Sad
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caminho
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Re: position-specific triggering of CH?
Reply #9 - Apr 20th, 2015 at 8:42am
 
Thanks, all for your replies. Nice to see I'm not the only one out there that has to sleep on just one side! Well, OK, I kinda don't wish that on any one else, but then it's also true that misery loves company, so... But it doesn't sound like anyone that's had this has had any nose surgeries?
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caminho
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Re: position-specific triggering of CH?
Reply #10 - Jan 12th, 2019 at 2:27am
 
Well, for reasons of just breathing better in general, I had the surgery for deviated septum this past May, and now in December I started a new cluster. So, once again confirming deviated septum seems to have no influence on CH...
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Re: position-specific triggering of CH?
Reply #11 - Jan 12th, 2019 at 10:03pm
 
Patent Foramen Ovale? Smiley

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