u/Charbellaa

Very severe rare case

I have long Covid and ME so I have nervous system over hyper activity to things

I had what I think was bppv in February I was tossing my head left to right all night on my pillow as I couldn’t sleep. Woke up with my head on the left and turned my head to the center then sort of turned it to the right and the right side of my room started to turn and my eyes were going with it (nystagmus) there was no panic or anything weirdly enough. I then sat up and it continued and then stopped lasted around 1 minute.

As soon as it stopped I was hit with sensory overload nausea couldn’t even move my eyes or look at a screen, derealisation, constant weirdness of the room. Tried to rest in bed closing my eyes my eyes would be rolling around and going crazy, my sleep completely stopped like no sleep at all. Laying down on my right or left side or even central or propped up didn’t matter I felt motion and movement in my head but weirdly no room spinning anymore more like I was moving instead now

I tried testing to see if I could get any room spinning but no position triggered it

A few times I tried to sleep and my brain would try to drop and I would get a fast head spin rush and wake up this happened 3 times and then my brain just stopped even trying.

Tried sleeping pills and they didn’t even work My gp kept telling me it would settle I went to the hospital brain scan was normal. I was literally getting micro minutes of sleep my brain would literally refuse to sleep this went on for a month the motion settled into a more of a brain motion feeling pattern which was the exact same thing as the original room rotation but like not the room doing it it was like me my brain was turning around if I laid on my right side I would feel like I was turning and then the same if I laid on my left side and even laying down or propped up was this turning sensation so everyone thought this can’t be bppv still as it’s happening in all positions

I was bedbound February and March and April

I still couldn’t sleep I was surviving on micro minutes of sleep and my gp was trying different meds and tried Daridorexant which made the motion react so badly it turn into fast spinning ( I’ve come to find out this drug works on the sleep wake transition) which is why my brain won’t drop into sleep this transition seems to trigger this spin head thing and my brain refuses to sleep

After this it was like my brain had been shocked again with a vertigo attack from this drug causing fast spinning my eyes were going everywhere and the sleep deprivation was so bad I ended up hospitalized a few days after taking that med that caused worsening spinning in my head. They had to put me on a benzo as I was so agitated and my heart rate was high I was going psychotic from no sleep from all of this

Anyway the benzo calmed my brain down, and gave me some light sleep. No one knows what to do with me I’m on this benzo which I don’t want to be on, it’s losing its effectiveness. I’m still experiencing sensory overload and still bedridden even writing this is hard using my eyes etc . Started to feel the motion feeling coming through too. My brain hasn’t slept normal since the vertigo attack happened to me in February. The benzo is only giving some partial light sleep to keep me going at this point

I really am at a lost with all of this it’s effected my mental health so bad I’ve even tried to … my life because of the suffering.

There is something going on with the vestibular system and sensory system where my brain refuses to drop into sleep because it thinks I’m moving or spinning or something I don’t know. It’s treating it as a threat I think

The problem I have is i have long Covid and ME and nervous system hyper excitability so I can’t do normal exercises and stuff as it makes my condition worst but it’s like the vertigo attack as triggered a sort of on going motion spinning in my head and sensory over load and my brain refuses to sleep cause of it .

Or I still have active bppv but I’m thinking this is unlikely.

The problem is I can’t sleep so me doing more like using my eyes makes everything worst. If I could sleep I wouldn’t have a problem

Please I need your wisdom to what is going on

I can’t function, I was already housebound due to my long Covid but now Bedbound in a dark room and having to rest my brain eyes and have nausea I’m suffering terribly

I’m so sleep deprived even with the benzo because my brain just won’t go into normal sleep. When the vertigo attack happened and the motion afterwards etc I wasn’t panicked or anxious I just let it be but it didn’t matter cause my brain wouldn’t cross over to sleep. This is a huge serious problem

This is happening to me after a vertigo attack Was hospitalized put On a benzo after severe sleep deprivation I have on going motion vertigo in my brain and sensory over load looking at screens make me nausea and my brain will not sleep it is only sleeping lightly on a benzo but will not go into proper sleep at all when it tried to I got a head spin rush and wake up and then it refuses to even try anymore I’m terrified.

I have long Covid and ME. I’m Bedbound

Don’t think I’m going to make it much longer For some reason my brain is treating this motion feeling as an orientation error and won’t let me fall into sleep the benzo is buying me some time but it’s getting less effective.

I’m not joking when I say before the benzo when the vertigo room spin happened I loss the ability to sleep even sleeping pills didn’t help me. I had micro minutes I was surviving on untill my body started going into crisis state and becoming agitated heart rate going high and I lost my mind and ended up in hospital

What am I suppose to do?

Has anyone had such severe insomnia? I don’t think it is common as mine has a physical vestibular block as to why it won’t fall into sleep because of on going motion feeling that I don’t know why. It’s been 5 months and my brain won’t fall into ANY sleep only with this diazepam I’m on I get light sleep only and it’s becoming less effective im guessing because it suppresses the vestibular system abit I don’t know .

I’ve never heard of such severe insomnia like this? Especially the sensory over load thing too

Very severe rare case

I have long Covid and ME so I have nervous system over hyper activity to things

I had what I think was bppv in February I was tossing my head left to right all night on my pillow as I couldn’t sleep. Woke up with my head on the left and turned my head to the center then sort of turned it to the right and the right side of my room started to turn and my eyes were going with it (nystagmus) there was no panic or anything weirdly enough. I then sat up and it continued and then stopped lasted around 1 minute.

As soon as it stopped I was hit with sensory overload nausea couldn’t even move my eyes or look at a screen, derealisation, constant weirdness of the room. Tried to rest in bed closing my eyes my eyes would be rolling around and going crazy, my sleep completely stopped like no sleep at all. Laying down on my right or left side or even central or propped up didn’t matter I felt motion and movement in my head but weirdly no room spinning anymore more like I was moving instead now

I tried testing to see if I could get any room spinning but no position triggered it

A few times I tried to sleep and my brain would try to drop and I would get a fast head spin rush and wake up this happened 3 times and then my brain just stopped even trying.

Tried sleeping pills and they didn’t even work My gp kept telling me it would settle I went to the hospital brain scan was normal. I was literally getting micro minutes of sleep my brain would literally refuse to sleep this went on for a month the motion settled into a more of a brain motion feeling pattern which was the exact same thing as the original room rotation but like not the room doing it it was like me my brain was turning around if I laid on my right side I would feel like I was turning and then the same if I laid on my left side and even laying down or propped up was this turning sensation so everyone thought this can’t be bppv still as it’s happening in all positions

I was bedbound February and March and April

I still couldn’t sleep I was surviving on micro minutes of sleep and my gp was trying different meds and tried Daridorexant which made the motion react so badly it turn into fast spinning ( I’ve come to find out this drug works on the sleep wake transition) which is why my brain won’t drop into sleep this transition seems to trigger this spin head thing and my brain refuses to sleep

After this it was like my brain had been shocked again with a vertigo attack from this drug causing fast spinning my eyes were going everywhere and the sleep deprivation was so bad I ended up hospitalized a few days after taking that med that caused worsening spinning in my head. They had to put me on a benzo as I was so agitated and my heart rate was high I was going psychotic from no sleep from all of this

Anyway the benzo calmed my brain down, and gave me some light sleep. No one knows what to do with me I’m on this benzo which I don’t want to be on, it’s losing its effectiveness. I’m still experiencing sensory overload and still bedridden even writing this is hard using my eyes etc . Started to feel the motion feeling coming through too. My brain hasn’t slept normal since the vertigo attack happened to me in February. The benzo is only giving some partial light sleep to keep me going at this point

I really am at a lost with all of this it’s effected my mental health so bad I’ve even tried to … my life because of the suffering.

There is something going on with the vestibular system and sensory system where my brain refuses to drop into sleep because it thinks I’m moving or spinning or something I don’t know. It’s treating it as a threat I think

The problem I have is i have long Covid and ME and nervous system hyper excitability so I can’t do normal exercises and stuff as it makes my condition worst but it’s like the vertigo attack as triggered a sort of on going motion spinning in my head and sensory over load and my brain refuses to sleep cause of it .

Or I still have active bppv but I’m thinking this is unlikely.

The problem is I can’t sleep so me doing more like using my eyes makes everything worst. If I could sleep I wouldn’t have a problem

Please I need your wisdom to what is going on

I can’t function, I was already housebound due to my long Covid but now Bedbound in a dark room and having to rest my brain eyes and have nausea I’m suffering terribly

I’m so sleep deprived even with the benzo because my brain just won’t go into normal sleep. When the vertigo attack happened and the motion afterwards etc I wasn’t panicked or anxious I just let it be but it didn’t matter cause my brain wouldn’t cross over to sleep. This is a huge serious problem

Light Sound - flutter feeling in ear Forhead squeezing Motion Talking Visual tracking screens moving eyes

This was triggered by a vertigo event and now stuck in a high gain sensory loop and can’t come out of it

The vertigo also triggered very rare severe insomnia I mean no sleep at all that made me deteriorate and end up in hospital on a benzo

I have rested in a dark room for months But it doesn’t matter cause the sensory over load is being triggered by this motion vertigo feeling I’m sure of it. Or the vertigo pushed my system into such a high gain state it can’t come down

My brain won’t enter normal sleep even with benzo maybe some light sleep but nothing normal or deep or restorative

I don’t understand what I’m meant to do

I need to taper off this benzo and I’m going to be even worst and end up back to the start again with zero sleep and deterioration with agitation akathsia shxt

I swear I am cursed. I’ve had a sensory over load thing before once in 2024 but it was triggered by over load so I rested dark room and it went away but this time the trigger was vertigo which is a big hit to the system

I don’t know what to do laying here dark room as much as I can doesn’t improve nothing

Am I stuck like this forever if rest doesn’t fix this? Even a benzo doesn’t fix it?

so as per my previous posts I’m at a lost what to do feel like I’m going to die eventually from my brain not being able to get sleep ever again

I’ve had insomnia for years from Covid but always been managed with nervous system work because it’s from hyper arousal and took cbd and melatonin etc.

But I had a vertigo attack in February room spin for 1 min nothing crazy I think bppv type thing I don’t even react to it there was no “ omg panic “ heart rate was normal etc. after it ended I went into a high gain sensory load state like couldn’t tolerate looking at anything even moving my eyes nausea etc.. rest in bed dark room kept feeling like I was moving eyes were going crazy when closing them but just thought it would settle, ever since my brain stopped sleeping. No sleepiness nothing Each time my brain tried to sleep it would get hit with this orientation error feeling and I’d get a head rush spin and wake up it happened three times and then my brain just stopped refusing to even go there anymore and I stopped sleeping but my heart rate wasn’t high there was no panic no adrenaline nothing like my usual hyper arousal insomnia.

I would get micro minutes of sleep and hallucinations that’s it I tried to rest this out for weeks i was also having a motion rotation feeling in my brain when resting laying down sitting up like a replay of the vertigo I had. I tried zopiclone sleeping pills they didn’t touch me. By March my body started going into a bad state my heart rate was going up I was getting agitated adrenaline from lack of sleep I tried Daridorexant which made the motion feeling in my head x1000 worst and then my brain went crazy after it my eyes were going everywhere it’s like it knocked the vestibular system again

I stopped being able to sleep not even micro minutes and I couldn’t eat couldn’t function at all and this was April at this point everything got too much and I went psychotic and tried to … my life unfortunately. Got hospitalized and put on a benzo which thankfully calmed a lot of it down and I’ve been on diazepam for 10 weeks now since hospital. It’s helped alot but not so much now and I’m getting very worried. I’m Bedbound atm trying to limit sensory load doing everything I can to get my brain to try to relax. It’s giving me some light weird rem sleep but it’s definitely not giving me normal sleep.

The conclusion to this is the sleep gate is being blocked and guarded because of this vertigo vestibular error it doesn’t feel safe to let me drop into deep sleep. But I can’t do nothing about that so what am I meant to do? My brain has reacted abnormally to this vertigo attack and it’s done something weird to my vestibukur orientation state where my brain thinks I’m moving or I’m unsafe so it won’t allow sleep. My brain has numbed me too so I don’t feel sensations as strong anymore including motion feeling.

I’m really at a lost here cause if I stop sleeping while being on a benzo what am I meant to do? I don’t respond to normal sleep meds they make the vestibulur system dizzy and reactive hence worsening. This is a huge problem and I’m very worried. I’ve tried all my tricks neverous system work winding down breathing nothing changes this problem it’s not hyper arousal type of thing it’s a orientation sleep gate problem

It’s like my brains receiving wrong signals from the vestibulur system that I’m spinning and moving and my stupid neverous system is so dysfunctional is thinks I’m unsafe to sleep

My normal insomnia is a cake walk compared to what I’ve been through. I’m really really terrified that once i stop sleeping or once this benzo stops working that’s it for me

I don’t know how to make the nervous system sleep gate or whatever it is stop doing this

Once the sleep starts stopping my body goes chaotic I’m not one of these people who have insomnia and can’t function my heart rate goes crazy I get agitation and akathsia with sleep deprivation adrenaline vibrations

I’ve never come across anybody who has experienced this. I’ve seen severe cases of people not sleeping at all from stress events but they don’t have vestibulur component blocking the sleep gate and it seems like they can function normally and they can take strong meds and don’t have vestibulur problems

( I have long Covid and was already housebound for years from this condition due to hyper sensitivity of the nervous system)

I’ve already had tests scans this is definitely a sleep gate network issue.

This vertigo attack has effected my sensory and vestibulur systems, can’t tolerate using my phone lights or sound sensitivity,

For reference I’m on diazepam 10mg

I know this is gonna kill me cause I can’t stop my brains vestibulur system from causing this motion stuff and then my brain doesn’t allow sleep. Even the benzo is stopping working slowly. I’m screwed

It’s not like I just have the vestibulur issues and can recalibrate my system I have sensory over load and sleep collapse you can’t retrain a system like this. Even going on my phone makes my hr go up I start sweating and feel nausea

I don’t know what to do anymore

so as per my previous posts I’m at a lost what to do feel like I’m going to die eventually from my brain not being able to get sleep ever again

I’ve had insomnia for years from Covid but always been managed with nervous system work because it’s from hyper arousal and took cbd and melatonin etc.

But I had a vertigo attack in February room spin for 1 min nothing crazy I think bppv type thing I don’t even react to it there was no “ omg panic “ heart rate was normal etc. after it ended I went into a high gain sensory load state like couldn’t tolerate looking at anything even moving my eyes nausea etc.. rest in bed dark room kept feeling like I was moving eyes were going crazy when closing them but just thought it would settle, ever since my brain stopped sleeping. No sleepiness nothing Each time my brain tried to sleep it would get hit with this orientation error feeling and I’d get a head rush spin and wake up it happened three times and then my brain just stopped refusing to even go there anymore and I stopped sleeping but my heart rate wasn’t high there was no panic no adrenaline nothing like my usual hyper arousal insomnia.

I would get micro minutes of sleep and hallucinations that’s it I tried to rest this out for weeks i was also having a motion rotation feeling in my brain when resting laying down sitting up like a replay of the vertigo I had. I tried zopiclone sleeping pills they didn’t touch me. By March my body started going into a bad state my heart rate was going up I was getting agitated adrenaline from lack of sleep I tried Daridorexant which made the motion feeling in my head x1000 worst and then my brain went crazy after it my eyes were going everywhere it’s like it knocked the vestibular system again

I stopped being able to sleep not even micro minutes and I couldn’t eat couldn’t function at all and this was April at this point everything got too much and I went psychotic and tried to … my life unfortunately. Got hospitalized and put on a benzo which thankfully calmed a lot of it down and I’ve been on diazepam for 10 weeks now since hospital. It’s helped alot but not so much now and I’m getting very worried. I’m Bedbound atm trying to limit sensory load doing everything I can to get my brain to try to relax. It’s giving me some light weird rem sleep but it’s definitely not giving me normal sleep.

The conclusion to this is the sleep gate is being blocked and guarded because of this vertigo vestibular error it doesn’t feel safe to let me drop into deep sleep. But I can’t do nothing about that so what am I meant to do? My brain has reacted abnormally to this vertigo attack and it’s done something weird to my vestibukur orientation state where my brain thinks I’m moving or I’m unsafe so it won’t allow sleep. My brain has numbed me too so I don’t feel sensations as strong anymore including motion feeling.

I’m really at a lost here cause if I stop sleeping while being on a benzo what am I meant to do? I don’t respond to normal sleep meds they make the vestibulur system dizzy and reactive hence worsening. This is a huge problem and I’m very worried. I’ve tried all my tricks neverous system work winding down breathing nothing changes this problem it’s not hyper arousal type of thing it’s a orientation sleep gate problem

It’s like my brains receiving wrong signals from the vestibulur system that I’m spinning and moving and my stupid neverous system is so dysfunctional is thinks I’m unsafe to sleep

My normal insomnia is a cake walk compared to what I’ve been through. I’m really really terrified that once i stop sleeping or once this benzo stops working that’s it for me

I don’t know how to make the nervous system sleep gate or whatever it is stop doing this

Once the sleep starts stopping my body goes chaotic I’m not one of these people who have insomnia and can’t function my heart rate goes crazy I get agitation and akathsia with sleep deprivation adrenaline vibrations

I’ve never come across anybody who has experienced this. I’ve seen severe cases of people not sleeping at all from stress events but they don’t have vestibulur component blocking the sleep gate and it seems like they can function normally and they can take strong meds and don’t have vestibulur problems

( I have long Covid and was already housebound for years from this condition due to hyper sensitivity of the nervous system)

I’ve already had tests scans this is definitely a sleep gate network issue.

This vertigo attack has effected my sensory and vestibulur systems, can’t tolerate using my phone lights or sound sensitivity,

For reference I’m on diazepam 10mg

I know this is gonna kill me cause I can’t stop my brains vestibulur system from causing this motion stuff and then my brain doesn’t allow sleep. Even the benzo is stopping working slowly. I’m screwed

It’s not like I just have the vestibulur issues and can recalibrate my system I have sensory over load and sleep collapse you can’t retrain a system like this. Even going on my phone makes my hr go up I start sweating and feel nausea

I don’t know what to do anymore

so as per my previous posts I’m at a lost what to do feel like I’m going to die eventually from my brain not being able to get sleep ever again

I’ve had insomnia for years from Covid but always been managed with nervous system work because it’s from hyper arousal and took cbd and melatonin etc.

But I had a vertigo attack in February room spin for 1 min nothing crazy I think bppv type thing I don’t even react to it there was no “ omg panic “ heart rate was normal etc. after it ended I went into a high gain sensory load state like couldn’t tolerate looking at anything even moving my eyes nausea etc.. rest in bed dark room kept feeling like I was moving eyes were going crazy when closing them but just thought it would settle, ever since my brain stopped sleeping. No sleepiness nothing Each time my brain tried to sleep it would get hit with this orientation error feeling and I’d get a head rush spin and wake up it happened three times and then my brain just stopped refusing to even go there anymore and I stopped sleeping but my heart rate wasn’t high there was no panic no adrenaline nothing like my usual hyper arousal insomnia.

I would get micro minutes of sleep and hallucinations that’s it I tried to rest this out for weeks i was also having a motion rotation feeling in my brain when resting laying down sitting up like a replay of the vertigo I had. I tried zopiclone sleeping pills they didn’t touch me. By March my body started going into a bad state my heart rate was going up I was getting agitated adrenaline from lack of sleep I tried Daridorexant which made the motion feeling in my head x1000 worst and then my brain went crazy after it my eyes were going everywhere it’s like it knocked the vestibular system again

I stopped being able to sleep not even micro minutes and I couldn’t eat couldn’t function at all and this was April at this point everything got too much and I went psychotic and tried to … my life unfortunately. Got hospitalized and put on a benzo which thankfully calmed a lot of it down and I’ve been on diazepam for 10 weeks now since hospital. It’s helped alot but not so much now and I’m getting very worried. I’m Bedbound atm trying to limit sensory load doing everything I can to get my brain to try to relax. It’s giving me some light weird rem sleep but it’s definitely not giving me normal sleep.

The conclusion to this is the sleep gate is being blocked and guarded because of this vertigo vestibular error it doesn’t feel safe to let me drop into deep sleep. But I can’t do nothing about that so what am I meant to do? My brain has reacted abnormally to this vertigo attack and it’s done something weird to my vestibukur orientation state where my brain thinks I’m moving or I’m unsafe so it won’t allow sleep. My brain has numbed me too so I don’t feel sensations as strong anymore including motion feeling.

I’m really at a lost here cause if I stop sleeping while being on a benzo what am I meant to do? I don’t respond to normal sleep meds they make the vestibulur system dizzy and reactive hence worsening. This is a huge problem and I’m very worried. I’ve tried all my tricks neverous system work winding down breathing nothing changes this problem it’s not hyper arousal type of thing it’s a orientation sleep gate problem

It’s like my brains receiving wrong signals from the vestibulur system that I’m spinning and moving and my stupid neverous system is so dysfunctional is thinks I’m unsafe to sleep

My normal insomnia is a cake walk compared to what I’ve been through. I’m really really terrified that once i stop sleeping or once this benzo stops working that’s it for me

I don’t know how to make the nervous system sleep gate or whatever it is stop doing this

Once the sleep starts stopping my body goes chaotic I’m not one of these people who have insomnia and can function my heart rate goes crazy I get agitation and akathsia with sleep deprivation adrenaline vibrations

I’ve never come across anybody who has experienced this. I’ve seen severe cases of people not sleeping at all from stress events but they don’t have vestibulur component blocking the sleep gate and it seems like they can function normally and they can take strong meds and don’t have vestibulur problems

( I have long Covid and was already housebound for years from this condition due to hyper sensitivity of the nervous system)

I’ve already had tests scans this is definitely a sleep gate network issue.

This vertigo attack has effected my sensory and vestibulur systems, can’t tolerate using my phone lights or sound sensitivity,

For reference I’m on diazepam 10mg

I know this is gonna kill me cause I can’t stop my brains vestibulur system from causing this motion stuff and then my brain doesn’t allow sleep.

Never tried benzos before but had a very rare thing happen to me it’s a long story but I had a vertigo attack and started getting vertigo in my brain and my sleep completely stopped. Like blankness nothing. I’ve suffered from insomnia since long Covid for years like days without sleep etc but nothing to that level EVER. It’s like the sleep gate was permanently shut This started in February I must of had micro sleep minutes tried zopiclone didn’t even touch me when I’ve taken it rarely before it knocked me out when I was in hyper arousal so this insomnia must be different somehow. I went from Feb - April I was deteriorating completely bedbound agigtation heart rate up I also started becoming numb like sensations wasn’t getting to my counciousness properly like I couldn’t felt my heart beat at all I could t feel the urge to pee, couldn’t feel pain properly like everything was getting dulled not pure numbness like i can feel touch to skin etc then my stupid dr tried me on Daridorexant that made the vertigo in my brain like a fast spinning and that then was the icing on the cake. My eyes were going crazy I couldn’t walk without walking into the walls, couldn’t eat and my sleep then fully collapsed like nothing at all closing my eyes felt like I was on a roller coaster. Severe agitation and aka from sleep deprivation my heart rate was just getting higher and higher and I tried to … my life. Ended up hospitalized was not functional rolling around the bed agitation like a crazy person and given loraz 1mg which did calm the vertigo in my brain and give me some patchy sleep but it wasn’t great I could still feel motion coming through and my sleep was weird I was told couldn’t stay on it so switched to diazepam 10mg after around 13 days which has helped and now been on that and all in all it’s been around 9-10 weeks. It felt like it took away to kick in but my god it was a sedating I take 5mg afternoon and 5mg nighttime. I was sleeping but I’m not sure if it was normal sleep.

But now fast forward a few weeks later not feeling any sedation sleeps crap I don’t think I’m sleeping I’m having light sleep maybe some weird rem conscious sleep and jeep waking up after rem I think. I’m also still numb I can’t feel sensations still so some signals are messed up but this was before the benzo. And I think it’s keeping the vertigo in my brain away.

But I’m going to have to taper off this it’s already been a long time. I’m very scared as I already not getting sleep properly taking it, the vertigo is probably going to come back and the benzo withdrawal. It’s going to take MONTHS to get off this fully too if I go down by 0.5mg I know cos I’m very sensitive and my NS is already fried from previous long Covid stuff.

I just don’t understand what’s happened, I never experienced insomnia like that where it’s like blankness and the sleep gate won’t open and no sleeping pills worked! I’m worried I’m going to end up how I was before and end up in hospital again cause it’s unbearable. I use to I take melatonin and cbd for my insomnia and do a lot of nervous system work but like I say nothing touched it.

Any advice?

Someone must have this symptom of body sensations being numbed!? Like your brain isn’t letting your consciousness feel things???? And such severe insomnia i had vertigo attack and all motion in my brain I feel like I’m dying Can’t do this any more Bedbound can’t sleep was hospitalized from sleep deprivation had to start a benzo but doesn’t really help give normal sleep failed all over sleep meds made me worst.

This is no life I can’t carry on 6 years of this illness and got worst in February and Bedbound ever since. I use to be able to feel everything I had hyper arousal and now my brain won’t let me feel anything it’s torture I can’t gauge symptoms like wtf!!!

I don’t see anyone with this symptoms I have long Covid version I don’t know wtf is wrong with my brain I always had hyper arousal adrenaline insomnia could always feel everything now I go from that to being blunted and numb. Can’t feel my heart beat even at 90/100 can’t feel urge to pee can’t feel pain in like a dead person.

I had a cold virus in January wasn’t Covid ( I know for sure) weeks after that started noticing weird things happening like suddenly woke up in the night and felt completely strange in my brain but no adrenaline and my heart rate was normal. Then I wake up to a vertigo attack days later and same thing no panic no heart racing and then I start getting vertigo motion in my brain and my sleep vanishes and tried to rest it out for couple months but deteriorated and started getting number and number untill I had to be hospitalized in April from sleep deprivation. Benzo stops the vertigo gave me some sleep back but it’s not enough I feel like it’s just keeping me out of crisis. I still am numb to sensations in the body I still can’t sleep like how I did before, why is this happening!!

What is actually wrong with my brain!!!

Ever since I had a vertigo attack which I think was bppv I have dealt with internal vertigo in my brain not the room spinning and my brain stopped sleeping completely ended up in hospital from severe sleep deprivation and out on diazepam as failed everything else

I tried zopiclone didn’t work Daridorexant made the spinning X1000 worst apparently cause it works on the sleep wake signal in the brain and that’s where the problems lays with my sleep transition problem from the vertigo!

Trazodone Mirtazapine

Has anyone got the same problem? Every sleep med making the vertigo worst? What is going on?

No wonder people with severe long Covid or severe ME kill themselves unless you have experienced the type of f*cked up neuro problems that leave you bedridden isolated for no one will ever understand .

I tried to end my life 2 months ago, now I kinda wish I succeeded in doing so.

My whole brain is fried plus im now stuck on diazepam ( great )

6 years almost I’ve had this shxt for, the last two years I could just manage being housebound and dealing with nervous system hyper activity adrenaline insomnia over load stuff mainly resting in bed but I could manage I knew my symptoms knew my boundaries

Now I’m dealing with a completely different ball game of symptoms after a vertigo attack (bppv I believe ) in February

After it happened my brain went into high gain sensory over load like everything was too much even moving my eyes nausea etc

My brain started replaying a vertigo motion feeling in my head and my sleep completely vanished

I use to feel everything hyper arousal stuff

Now I’m blunted numb can’t feel much of anything like pain, hunger, urge to pee the sensations have been dulled down to my counciousness

Utterly severe complete loss of sleep which is how I ended up sleep deprived and hospitalised and ended up on diazepam My brain won’t fully switch over to sleep instead I’m stuck in this weird imagery hallucination dream like state I notice this a lot when I’m resting in the day time with diazepam I must be getting some light sleep to keep me alive at this point ( failed all sleep meds and they made me worst)

I’m now bedbound, numbed out, can’t hardly sleep, luckily I don’t feel that vertigo motion anymore. But I still can’t improve I thought the motion was the thing keeping my brain from not sleeping but even now the diazepam has kept the vertigo at bay my brains still fuXked I’m still numb I can’t sleep it’s like sleep gate instability can’t fully go into sleep.

I think the diazepam is doing something or I would be in crisis point again but I don’t understand why my sleep is not coming back to normal why am I so numb?

All of this is extremely scary and no answers I naively thought I’d be on diazepam for a short while it’ll break the loop and it’ll stop the vertigo and my sleep will come back and I’ll taper off the benzo. Well 9 weeks later and that’s not happened. And I’m not going around jumping from sleep meds to sleep meds and antipsychotics and all this shxt I refuse to get into that loop cause I know it all stops working it’s why I never took any meds before and worked on my nervous system naturally for my sleep and it helped a lot plus cbd.

I fear I’m just going to wither away in bed and eventually die, how am I even supposed to to get off this benzo now if I’m not even sleeping properly and nothings barely changed?

I fear this is the last straw for me I think my brains broken beyond repair it’s in a completely fuxked up state and nothing I do is getting me out of it

Before I would rest and limited screens and everything and I would climb out of the hyper arousal but this is something different

I just don’t want to suffer anymore it’s inhumane Just when you think things can’t get worst oh they very well can.

I see others who are severe there not numb they can feel there symptoms and they can at least get some normal sleep to recover and they don’t have this weird crap after a vertigo attack and weird vertigo in the brain or extreme sensory over load that is so severe your brain can’t even get out of it even with complete brain rest.

Either way I’m doomed I don’t see a way out of this unless my brain starts sleeping normally again or I stop being numb but how can I get out of this? I can’t force my brain

Sorry for the rant I’ve just had enough no one should have to live this way

Has anyone with severe insomnia had this weird sleep-wake/dreamlike state?

I’m trying to describe something that keeps happening when I rest or try to sleep.

It doesn’t feel like a normal nap or normal dreaming. It’s more like I’m not fully conscious, but I’m also not properly asleep. I get these weird dreamlike/thoughtlike fragments or imagery — almost like little bits of scenes or stories — but they’re blurred, patchy, not smooth, and I usually can’t remember them properly afterwards.

For example, I might vaguely remember one tiny bit, like being in a car, but the rest is just strange fragmented imagery/thought-dream stuff. It doesn’t feel like normal dreaming, and it doesn’t feel like normal thinking either. It feels like I’m stuck at the sleep-wake border.

I’ve seen terms like hypnagogic imagery, hypnagogic mentation, microsleeps, light sleep fragments, or REM-like intrusion, but I don’t know what fits best.

This started after a vertigo attack in February that then led to complete severe insomnia/sleep-collapse where I was hospitalized due to severe sleep deprivation i was put on diazepam that I’m still on I don’t get normal sleepy feelings, and sleep doesn’t feel smooth or restorative. When I rest, I often fall into this weird in-between state rather than proper sleep.

Has anyone had this with severe insomnia, long COVID/ME, vestibular issues, or nervous system dysregulation? Did it eventually settle, and did anything help?

Can’t feel my heart beat even if it’s 100 plus Can’t feel urge to pee No hunger feelings Can’t feel pain really If I accidentally lean on my arm and make it go dead and feel pins and needles I hardly feel it Pinching myself I hardly feel It’s not just certain parts it’s every part of my body Can’t even feel a headache

I hate this so much I use to be in hyper arousal and feel EVERYTHING adrenaline heart racing head pains nausea everything I would feel

This is even worst because I can’t gauge symptoms and I have me/CFS long Covid

This happened to be after a vertigo attack and I stopped sleeping and eventually become more numb. I am on a benzo now because of vertigo and sleep issues but it’s not that I had all of this before I started the benzo

I read up that it’s a protective mechanism your brain can do turning down signals to your consciousness to protect you when it’s overwhelmed

Honestly I would rather feel everything like I did before at least I know when to rest or how to manage things. I am bedbound and just feel completely numb

What the hell do you do about this?

So I’m in the process of sorting out carers I’ve had the assesment and done the financial asssement and I’m waiting to hear back . Ideally I obviously want the direct payment as the standard care package isn’t enough for what I need. They only do basic things

I need someone to come once or twice a day to make me lunch and then dinner, empty commode, I need a cleaner once a week or so, and someone to change my bedding/ maybe do laundry too like once or twice a week as I don’t really have much to wash ( lol always just in my pjs) my mum will be coming in the day to do bits and she will get my food shopping but yeh. I live alone and my partner left me last month so my mums had to come twice a day to do me some lunch and dinner, and leaving me snacks and fruit etc .. but it’s obviously a lot for her to do hence I need help with carers .

I’m still not sure about the washing hygiene needs yet I think I’m more comfortable with my mum washing me every so often and I use wipes aswell inbetween .

I’m Bedbound/ dark room and I know it sounds harsh but I really don’t want much contact with the carer I would just like them to come in cook meal and then leave it on my bed etc and minimal talking contact. I can’t be having chats with them etc Also Covid cautious so I really need someone who will wear a mask around me.

Anyone have any advice or know more about this than me? They explained if it was a direct payment then I’d have to look at company’s myself and pay them.

Anyone got any experience with this

Thank you x

I wanna start by saying I have long Covid and CFS/me for 5-6 years already dealt with severe insomnia during all this time days of no sleep then eventually 1-3 hours etc and things improved with time and sleep hygiene and cbd. I was housebound btw I had adrenaline surges and awful symptoms but I managed through resting pacing and stuff

I had a vertigo attack in February when I woke up one morning probably bppv and basically long story short I completely stopped sleeping I don’t mean 1 hour etc I mean like nothing I had a few minutes seconds of micro sleep weird dream thoughts but that was it. It was t just insomnia I had this internal vertigo in my brain while resting which now I think made my brain go into monitor mode and stopped me sleeping as it saw the motion as a threat or something like that. I tried zopiclone sleeping pills ( not regularly once/twice a week) to try see if that would help as previously it would knock me out during a rough insomnia episode . Nothing touched me. This went on for 1-2 months untill the sleep deprivation got so severe I started getting agitated Akathisia type feelings heart rate was getting more elevated I was delirious visual hallucinations couldn’t eat Bedbound I felt like I was going to die. This is coming from someone who has dealt with severe insomnia for a while but NEVER to that degree I could go days with no sleep and then eventually sleep abit broken etc

I ended up trying to … my life and ended up hospitalized and put on a benzo. Which was the only thing that worked to calm down this internal vertigo and give me some sort of light broken sleep, my heart rate came down etc I’ve been taking it for 8-9 weeks so far it’s 10mg of diazepam.

I’ve never taken benzos before absolutely hate meds I’ve always done neverous system regulation work for insomnia but like I say nothing touched this insomnia which I never thought was even possible?

I see a lot of people on here say they have severe insomnia where they don’t sleep at all but they can still function . I can’t see how that is possible, sleep deprivation made me not be able to lift my head up couldn’t eat move walk I felt like I was dying my whole body aching delirious. Heart rate was going to 90-100 just laying down

I don’t want to be on benzos I really don’t but I’m terrrfied about the vertigo and insomnia coming back and me ending up hospitalized again. I just can’t understand any of this as I see people with all sorts of vestibular symptoms and they can still sleep fine!? So why can’t I !?

There must be someone else out there that has this level of insomnia? According to chat gpt item like a sleep gating guarding problem because of the vertigo attack and my brain is monitoring for motion.

With the benzo I’m getting some light sleep which i don’t even care it’s better than nothing at all. And it’s keeping this vertigo in my brain suppressed.

I also have other shit going on since this happened weird stuff like blunted signals in my body, like my brain is blunting out stuff like I can’t feel pain much I can’t feel things properly but not in a numbness way more like my brain has put me into this freeze state to protect me.

Yes I’ve been checked for other things this is very much due to a vertigo attack and the way my brain has responded is completely irrational

Can people tell me who have very severe insomnia like this what you do?

I don’t want to be jumping on all sleep meds and having to do that all my life I believe this is a brain nervous system problem but I literally can’t get out of it. It’s terrifying.

I want to taper off the benzo cause it’s already been 8-9 weeks but then I’m scared of that too!

Some of you may remember my post previously about having vertigo then ending up with internal vertigo and sensory over load and my brain completely stopped sleeping and I ended up hospitalized and put on diazepam which was the only thing that stopped all the crazy stuff in my brain

I need to taper off soon I dunno how I’m going to get through iT but I think I’ve built tolerance.. sleeps not good anymore heart rates up ( could just be my nervous system or the heatwave we are having here in the uk) but the sedating effects have worn off, no vertigo motion in my brain tho but probably is still not working for that maybe🤷🏼‍♀️

I know it’s best to get off this now I’m going to go very slow and it’s going to take me months by reducing 0.5 every 2-4 weeks and seeing how I go. Very nerve racking wish I never had to have them but didn’t have a choice.

I’m just not sure what I’m meant to do if all the shxt comes back again and my brain completely stops sleeping and the vertigo etc I went psychotic last time after trying to “ rest it out “ for 2-3 months. Only got worst with extreme agitation from sleep deprivation.

But I’m going to have to just deal with it I’m not sure what else I can do, I don’t want more meds I just want to go back to before I had a vertigo attack I was housebound but managing and now I’m bedbound having to organise carers as I live alone and especially with me coming off benzos and I dunno how bad things will get.

Anyone come off benzos while being severe? I’m on diazepam 10mg a day.

I just can’t do it no more 6 years of this shit just worsening. Being housebound was bad enough for 2 years then I get a vertigo attack that changes everything in my brain. Weirder symptoms . Hospitalized . Went from no meds at all apart from cbd and melatonin and nervous system regulation work and knowing my symptoms to now being on benzos bedbound and blunted symptoms and I just feel like I can’t do it any more. My brain isn’t normal it doesn’t react normal to things . People get vertigo attacks and can still sleep there brain doesn’t go into a crazy network state of internal vertigo rotating in my head sensory over load and my brain refusing to sleep AT ALL and ending up in hospital cause I was psychotic from sleep deprivation.

This shit is not normal at all . Now I’m on fucking benzos that I don’t want to be on and I’ll have to taper those to then probably just still have the same problems come back or even worst more symptoms of withdrawal to deal with

My fiancé of 13 years has left me on top of this

I’m just so sick and tired of this life and what it keeps throwing at me. I don’t know how much I can take anymore

Anyone experienced this?

Can’t feel things as strongly as I normally would

Examples : full bladder, pain signals, muscle pain, heart rate when it’s up etc

It’s like the signals are blunted and not getting to my consciousness

I see a lot of people with me/CFS that deal with the more fatigue sleeping alot PEM brain fog flavour but then others who have the opposite severe insomnia sensory overload issues adrenaline issues hyper sensitivity of the nervous system is this more of a thing that covid directly causes as oppose to only me/CFS thing ?

Or maybe me:CFS presents itself differently in each of us… some with fatigue sleeping alot and others with nervous systems that can’t sleep at all and sensory issues that leave us bedbound

I’ve had both in my early years of long covid I had the classic fatigue malaise PEM brain fog but was more functional then 3 years later the opposite happened with the severe insomnia and can’t tolerate anything which for me is so much worse than the fatigue crashes stuff I use to get, now it’s like the nervous system is on a hair pin trigger

If so what do they help with? Have you seen improvement taking them along side any nervous system work etc?

(Please no comments about the benzo risks i think we are all aware some of us don’t have a choice)