Exploding head syndrome (EHS) (hearing bangs when you drift off)

Is there anyone here right now dealing with this too? Its nothing like the "classic" non benzo exploding head syndrome, then you just sometimes, or for brief periods wake up to a weird sound, usually like an explosion or door/bell etc... From the few old posts I found about it, it seems like benzo has its own horrible variant of it.

 

tomorrow I will be 12 months off K (only 3 weeks on). Right now my only symptoms are bad sleep (broken, about half the time I get 6ish broken hours, currently less, still too many sub 4 nights.) and hypnic stuff (EHS, jerks)

 

In acute, 3,5 months I got the EHS thing too, but I only recall 1 night that it was crazy like many times and i heard bangs while my jaw would hypnically snap closed as well. Other than that I think in acute i had it most nights a few times, it wasnt too terrible. I mostly got it when drifting off, especially the second part of the night. Then it went away. I had a little window from 3,5 to 5,5 months, with not many symptoms left just broken sleep, but I was getting many 6ish hour nights. No hypnic stuff.

 

Then at 5,5 I got my setback/wave... (maybe quitting birthcontrol pill or a deparasite pill) a lot came back (now gone again), including hypnic stuff like jerks, jaw snaps and EHS. But the EHS was way more than in acute like nights of 20+, 30+ and even 50+ times... then some nights its nearly gone again or just a few in the end.

 

Last night was terrible again, literally as soon as i closed my eyes BANG, each time i started drifting off even the slightest tiny bit BANG, sometimes multiple times in a minute. After awhile of this I am wide awake... I barely got 2 broken hours last night. Its so upsetting. I have had 4 horrible nights like this this week after finally some better weeks with many 6+ broken nights (still some EHS)... I cant believe that window crashed again, cause i think its not only EHS, its also that just being wide awake thing back again, though i do think the hypnic stuff makes it so much worse.

 

It feels so freightening, it makes my sleep anxiety so much worse. When i go to bed its like what freak show will it be tonight... jerks, EHS bangs... i am very scared this will never stop or even get worse.

 

The sounds are not really a bang, more like a sheet being hit, or an electric stapler, or marbles rolling against eachother, something like that. I would love to hear from people who had this bad and it went away for good.

I fell for you. I dont get the exploding but I occasionally get the hypnic stuff.  But It doesnt happen when I am drifting off  I dont usually drift off though. I rarely get tired. I just close my eyes and go unconscious. This morning after cobbling together a few hours last night. I was woken up with my legs, arms, and neck randomly jerking. When I finally came awake my jaw snapped open and closed about 3 times. It was very scarey stuff. I always wake up to something horrible. Yesterday it was uncontrollable shaking. The day before it constant vomiting. I too am scared to go sleep because I hate to think about about what the morning is going to bring.  I hope we get better soon.

I fell for you. I dont get the exploding but I occasionally get the hypnic stuff.  But It doesnt happen when I am drifting off  I dont usually drift off though. I rarely get tired. I just close my eyes and go unconscious. This morning after cobbling together a few hours last night. I was woken up with my legs, arms, and neck randomly jerking. When I finally came awake my jaw snapped open and closed about 3 times. It was very scarey stuff. I always wake up to something horrible. Yesterday it was uncontrollable shaking. The day before it constant vomiting. I too am scared to go sleep because I hate to think about about what the morning is going to bring.  I hope we get better soon.

I dont really drift off usually, its more like blackout too but even then there is a moment you start to go into light sleep i guess... thats when it strikes.

 

I had so many hypnic jaw snaps... maybe you had that too. Its so scary to go to bed and each night wonder what freak show its gonna be... i have had decent nights too (6+ hrs broken) these last months but these last 5 nights 4 were so horrifying again, i feel horribly mentally. Didnt realise you get weird hypnic stuff too. Yes its about time it changes for the better for us isnt it... just goes on and on

The hypnic stuff just started for me. Back in acute when I wasnt sleeping at all my mr brain would try to shut off during the day because it was so tired. I would get the jaw snapping then. But it would only happen if i tried to sleep during the day. I sometimes wonder if my brain is permanently damaged. I actually dont think it was being on the drug that caused this. I believe it was caused by me going off cold turkey and just white knuckling it through the 2 serious acute phase. I think if I would have been a little more knowledgable back then and did a quick 2 month taper I probably would be good by now. I see you went cold turkey as well. How bad was your acute? Mine was really bad. If you go to some of the other websites you see people that abused these drugs for fun. They taper off and are fine after a couple of months. Meanwhile people like us who innocently took it as medicine get nailed for months or years with symptoms.

The hypnic stuff just started for me. Back in acute when I wasnt sleeping at all my mr brain would try to shut off during the day because it was so tired. I would get the jaw snapping then. But it would only happen if i tried to sleep during the day. I sometimes wonder if my brain is permanently damaged. I actually dont think it was being on the drug that caused this. I believe it was caused by me going off cold turkey and just white knuckling it through the 2 serious acute phase. I think if I would have been a little more knowledgable back then and did a quick 2 month taper I probably would be good by now. I see you went cold turkey as well. How bad was your acute? Mine was really bad. If you go to some of the other websites you see people that abused these drugs for fun. They taper off and are fine after a couple of months. Meanwhile people like us who innocently took it as medicine get nailed for months or years with symptoms.

My acute was REALLY bad, so bad i thought i had to give up my kid to foster parents... pre benzo i just solo parented for 6 yrs and travelled the world with her... alone... thats how bad it was. Lasted 3,5 months...

 

I could never have done a taper... looking back i got interdose withdrawal tolerance after just 3 freaking days on the clonazepam, i cold turkeyed the day after i went down with a 3 hour vertigo where i could not even lift my head, i wonder now if it was a seizure... maybe i am wrong but i feel staying on that stuff even a bit longer it could have killed me. I never even felt any benzo effect while on it like relaxed or anything, as if i had taken nothing... build tolerance so quickly, you might not be that sensitive but you are still a short termer... so very sensitive... truth is you will never know now what a taper would have done, you are so far out, better days may be ahead even if it doesnt feel like it

The hypnic stuff just started for me. Back in acute when I wasnt sleeping at all my mr brain would try to shut off during the day because it was so tired. I would get the jaw snapping then. But it would only happen if i tried to sleep during the day. I sometimes wonder if my brain is permanently damaged. I actually dont think it was being on the drug that caused this. I believe it was caused by me going off cold turkey and just white knuckling it through the 2 serious acute phase. I think if I would have been a little more knowledgable back then and did a quick 2 month taper I probably would be good by now. I see you went cold turkey as well. How bad was your acute? Mine was really bad. If you go to some of the other websites you see people that abused these drugs for fun. They taper off and are fine after a couple of months. Meanwhile people like us who innocently took it as medicine get nailed for months or years with symptoms.

I had pretty bad dp/dr too, thats gone since some months... for you too right... they sleep takes the longest to restore

It sounds like you had a bad reaction from the start. I never had any issues while on the drug. When I realized I was dependent I wanted off. I foolishly thought that I could quit fo they withdrawal and be fine in a month or 2.

Yeah, I had dp/dr really bad for about 7 or 8 months. I think I had a seizure as well. I remember laying down on the 4th or 5th day and it felt like electrify was coursing thru my body and I was just wiggling. That’s the best way I can describe it. Most of my crazy symptoms have cleared up. Now all I’m left with is this squeezing/burning sensation in my brain, muscle rigidity and muscle tremors, major anxiety, and of course severe insomnia. It must be tough being a single parent and going thru this. I have 4 kids. They are all teenagers so mostly self supporting but I also have help. I do know one thing though. There is no way that I can live like this for 2 years or more. But you did have a little window a while back so that is a good sign. I have yet to have a window

 

It sounds like you had a bad reaction from the start. I never had any issues while on the drug. When I realized I was dependent I wanted off. I foolishly thought that I could quit fo they withdrawal and be fine in a month or 2.

Yeah, I had dp/dr really bad for about 7 or 8 months. I think I had a seizure as well. I remember laying down on the 4th or 5th day and it felt like electrify was coursing thru my body and I was just wiggling. That’s the best way I can describe it. Most of my crazy symptoms have cleared up. Now all I’m left with is this squeezing/burning sensation in my brain, muscle rigidity and muscle tremors, major anxiety, and of course severe insomnia. It must be tough being a single parent and going thru this. I have 4 kids. They are all teenagers so mostly self supporting but I also have help. I do know one thing though. There is no way that I can live like this for 2 years or more. But you did have a little window a while back so that is a good sign. I have yet to have a window

i really think we will be much better in 2 years if we stick with riding it out,but i know how hopeless it feels in the meanwhile. sorry you are going through this too!

You both were on the drug for such a short time, both quit cold turkey and are sharing similar symptoms, I'm glad you found each other but I wish I could help you find answers.  I can't imagine the anxiety you both must feel going to bed, I've suffered from a light case of sleep anxiety in the past but I think I'd be outright fearful if I had to experience what you have.

 

I wish I could help but the only thing I can do is commiserate and say I believe your symptoms will resolve. 

 

heyilona, you mentioned in a PM to me that you aren't taking any medications and haven't changed anything but how is your stress level?  I know it must be high with worry about caring for your child but has anything else happened that could be causing this uptick in symptoms?

You both were on the drug for such a short time, both quit cold turkey and are sharing similar symptoms, I'm glad you found each other but I wish I could help you find answers.  I can't imagine the anxiety you both must feel going to bed, I've suffered from a light case of sleep anxiety in the past but I think I'd be outright fearful if I had to experience what you have.

 

I wish I could help but the only thing I can do is commiserate and say I believe your symptoms will resolve. 

 

heyilona, you mentioned in a PM to me that you aren't taking any medications and haven't changed anything but how is your stress level?  I know it must be high with worry about caring for your child but has anything else happened that could be causing this uptick in symptoms?

Thanks so much Pam for the reply. Last 2 nights was horrible again, hearing a snap/bang/thump each time i drifted off... got maybe between 2 and 3 broken hours. The 3 nights before were better only like 2 times. This was the first time I got it two times this bad in a row.

 

September was strange, earlier on i got a week of way more hypnic jerks.despite a few real bad nights though i had s bit of a window with sleep getting more broken 6 hr nights then before and right before this exploding head thing went beserk like 10 days ago i got 3 of my best nights since cold turkey... alomst slept through the night once, first time in a year. I though hey maybe a window for real. I did have more nights with more than usual exploding head syndrome in September... nothing in my life changed.

 

Then I had a bad night like 3 hrs then i am always upset, nothing new, but that day i freaked out massively about finding out my new neighbours are going to be a young couple snd the guy loves hardcore music... i was in shock... the houses are bring build and are ready next summer. So i was really upset... but then i have been terribly upset so many times since cold turkey... and had even worse stress... it never triggered this before.

 

The weeks before this was really a little windpw felt a little sleepiness for the first time again a few times. Now i got slammed again... i could totally handle the sounds when it was just a few times a night but this is too much...

 

Never had any hypnic things in my life ever until benzo  I have also had hypnic jaw snaps come back nightly for 2,5 months ironically that stopped now mostly. They didnt bother me much this time, was just 1 or 2 snaps at thevstart of the night, in acute it was like EHS now, each time i drifted off my jaw snaped close. I am 100% sure clonazepam caused all of it started days after cold turkey.

 

I just need it to not be permanent...

 

Oh and i talked to Baylissa back in June, she said then all my symptoms seem like classic benzo wd and i should heal fine, she has spoken to 100s of short termers she said.

 

Back then the EHS was not this bad though so i didnt ask about it specifically.

My mental symptoms, chemical anxiety, dp/dr are actually pretty much gone, had been fading since June. Its really sleep and hypnic stuff thats left...

Im so sorry to hear about your continueing symptoms. its good to hear that all of your mental symptoms have lifted. Thats progress. My dp/dr lifted about 2 months ago. I still have the occasional hypnic stuff like jaw snapping and legs and arms jerking but mine usually happens when I am starting to wake up. I still have chemical anxiety but it is starting to get better. I havent had a panic attack in a while now. My physical symptoms just wont go away. I get these inner tremors all day. It feels like all of muscles are vibrating and my body is always so tight. I also have temperature problems. I go from hot to cold all day.My heart is always flip flopping in my chest as well. I also have weird feelings in my head. Sometimes it feels like my brain is fire other times it feels like there are bugs crawling around in there. Its very strange. But like you my most debilitating symptom is insomnia. It seems hopefully be getting better. I can now fall asleep most every night with no medications and last night I slept for 5 hours uninterrupted. It was light crappy dream filled sleep but it was better than nothing. I pray for our eventual recovery. Keep hanging in there.

I am 100% sure clonazepam caused all of it started days after cold turkey.

 

I just need it to not be permanent...

 

Out of everything you just wrote, I keyed in on this and I agree with your assessment and I also want to let you know it won't! 

 

The fact that the jaw snaps have lessened tells me you're healing, I wish it was linear, that would help us not to feel so discouraged but our symptoms have to run around and through us a few times before they finally leave. 

Ans here i am at 19 months off and its this bad again... a few weeks ago it was finally gone for 4 to 6 weeks, after a year nearly nightly though usually not as bad as when i made this post and right now again. Now its been back for a few weeks and pretty bad like many and loud each night but i could sleep "inbetween" them... the last 2 nights no... each time i drift off the tiniest bit WHACK i hear it right in thr middle.of my head.

 

My sleep hasnt improved either just endless variations of not near normal but not too bad and then terrible again... had imagined to maybe see some improvement at 18 months... now i am not counting on anything anymore. Got broken 3 hours these past 2 days.

I am so sorry to hear that heyilona. I had hoped that things would be getting better for you. Im almost 18 months off and mine hasn’t gotten much better either. I’ve pretty much given up on healing. Whatever happened to my brain has become permanent. I don’t get the exploding head but I have the horrible hypnic jerks. It’s like a high voltage electric current get pumped into my body right when I am falling asleep. I guess I’ll have to go thru the rest of my life exhausted and anxious from lack of sleep. Please keep on us informed of any progress that you make.

hey xray, i know the feeling, liek that i wont heal, but the brain takes a long time to heal from this crap, 2 or 3 years is possible and completely even 5, so sorry it still sucks for you too