Exploding head syndrome

[Jamesmsv]

I have suffered from this all my life and thought it was normal, until I heard it mentioned on some programme or other. It is far more prevalent than CH but still relatively rare. I would be interested to note how many sufferers here also have this condition. One red flag for a link to CH is that a suspected cause of EHS is temporary calcium channel dysfunction. Calcium channel blockers have been used to try and treat EHS, I am not sure how successfully. 

More information : https://en.wikipedia.org/wiki/Exploding_head_syndrome

[Pebblesthecorgi]

My understanding that this is largely painless and completely sleep related.  It is classified as a sleep disorder

[Jamesmsv]

I can confirm it is completely painless, it's simply a weird sensation like hearing someone slam the bedroom door. I had always thought it was a natural part of dropping off, like those odd occasions when you are jolted awake by the literal feeling of 'falling' asleep. I'm quite surprised it's classified as a condition, I can't say it has any effect on my life at all as I only get it once a night. 

Regarding any potential link to CH I don't think we can rule something out just because it's pain-free. The fact calcium channel blockers are used to treat EHS and it's related to the sleep cycle (and therefore the circadian rhythm) means there should be some cross-over with CH in terms of what the brain is doing (or doing wrong). But if I'm the only one here to suffer from it I guess there's no meaningful correlation to pursue. 

[xBoss]

I get them. I cannot stand the instant jerk wake up with the feeling that I was not breathing. It always seems like it was loud but loud in a weird different way from normal loud. Hard to describe.

[Jamesmsv]

I know what you mean, it is very hard to describe. The worst part for me is not anything that happens to me physically, it's the lying there wondering if an intruder has just smashed down my front door. But over the years you start to recognize when the sound has come from inside your head and not externally, most of the time.

It's not something I've paid much attention to in the past and I can't say for sure, but I am sure that during a cluster cycle I don't get EHS. But it's much harder to correlate those two things, EHS for me has been far less regular than CH, it might just be coincidence. xBoss, if you don't mind me asking, has there been any discernible pattern/ timetable to your EHS? 

[xBoss]

The only pattern I can think of is that it tends to happen more often when I am more in need of sleep or more tired I guess. Yeah, lately it makes me feel like the doorbell was ringing. Such a weird thing. Us clusterheads def. have some quirky issues so it's good to try and find correlations. My spectrum of nero type issues is CH, EHS, panic attacks, cold seizures, ringing in the ears, mild tremors in the hands.....

[Jamesmsv]

This is where we start to diverge - I occasionally get panic attacks during a cluster, most often when I know it's going to end up as a 10, or of a 10 has been going on longer than usual. But I would class that as a pretty natural response given what's happening, rather than a traditional panic attack which I understand can happen at any time. 

I don't get ringing in my ears but do occasionally get a tinnitus kind of piercing sound - but I attribute that to sinus problems (which I'm sure is part of the whole CH problem when looking at the big picture). 

 I also have permanent Horner's syndrome as a result of the CH. 

It's so frustrating isn't it? I bet if 10 more people answered this thread they too would have different co-morbid conditions. 

[Into Light]

i just found out sleep apnea can be a cause of cH too.. interferes with sleep cycle and that messes with the hypothalamus which sets sleep cycle. it is thought [mea culpa, can’t remember medical citation] that CH often hits during transition feom or to REM.

[plhbn]

I took phenibut (GABA analogue) a few times to see if any positive impact on sleep.  It induced these symptoms severely to the point that I immediately discontinued use.  I would jerk awake many times while falling asleep certain that my breathing stopped.  Sometimes a loud sound was present and sometimes not as I remember.  Nothing like jerking awake several times with the feeling of not breathing to help a good nights sleep.   It happens occasionally to me in any event but with phenibut it was magnified enormously.

[Jamesmsv]

On 8/23/2020 at 4:48 PM, Into Light said:

i just found out sleep apnea can be a cause of cH too.. interferes with sleep cycle and that messes with the hypothalamus which sets sleep cycle. it is thought [mea culpa, can’t remember medical citation] that CH often hits during transition feom or to REM.

This prompted me to go down a bit of a rabbit hole and it appears that there are some researchers looking at CH in the wider context of sleep disorders. This is a good summary page to start:

https://pubmed.ncbi.nlm.nih.gov/19272283/#:~:text=Patients with cluster headache (CH,an associated abnormality in CH.

An interesting quote from one of the papers:

"Further, it is made plausible that the headache attacks are but one aspect of a more complex syndrome of central dysregulation manifesting as sleep-related complaints."

 

[Into Light]

On 12/1/2020 at 5:45 AM, Jamesmsv said:

This prompted me to go down a bit of a rabbit hole and it appears that there are some researchers looking at CH in the wider context of sleep disorders. This is a good summary page to start:

https://pubmed.ncbi.nlm.nih.gov/19272283/#:~:text=Patients with cluster headache (CH,an associated abnormality in CH.

An interesting quote from one of the papers:

"Further, it is made plausible that the headache attacks are but one aspect of a more complex syndrome of central dysregulation manifesting as sleep-related complaints."

 

Thanks...

 

[Into Light]

Wow, talk about a rabbit hole. I just opened every paper in a new tab. I'll probably create a LiquidText project to organize and distill them.