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Insomnia


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You don't have sporadic fatal insomnia.  I left the same type of post over 3 years ago and told everyone goodbye and I'm still here and you will be too.

 

You don't "develop" fatal insomnia from being kindled even 100 times.  As you know, there are two kinds of fatal insomnia...genetic and sporadic and you DON'T have either one.

 

Insomnia sucks big time, but you won't be dying anytime soon!  :thumbsup:

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[1d...]

You don't have sporadic fatal insomnia.  I left the same type of post over 3 years ago and told everyone goodbye and I'm still here and you will be too.

 

You don't "develop" fatal insomnia from being kindled even 100 times.  As you know, there are two kinds of fatal insomnia...genetic and sporadic and you DON'T have either one.

 

Insomnia sucks big time, but you won't be dying anytime soon!  :thumbsup:

 

I can’t talk anymore, I’m almost mute can’t walk, can’t think, my brain is blank, no memories, no thoughts, I can’t see at all not blurry but my brain is too tired to produce sight, I feel totally brain dead, can’t sleep at all, I don’t even dream anymore because I don’t sleep I’m half awake and hallucinating. My brain just almost doesn’t work anymore, PET scan showed thalamic atrophy. Can’t coordinate muscles movement

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You write pretty good for someone who is just about brain dead. As bad as things may seem, they probably are not as bad as you think.
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Akul,

Who ordered the PET scan for you?

What did they say about it?

Thalmus atrophy usually has specific causes.

I'm just curious what docs are telling you. Did they tell you that you have fatal insomnia? Are you still on zyprexa and Lyrica?

 

I want to offer support because I know you are suffering, there is just so much that we don't know about your situation :(

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[1d...]

You write pretty good for someone who is just about brain dead. As bad as things may seem, they probably are not as bad as you think.

 

That’s not me typing it is my cousin.

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[1d...]

Akul,

Who ordered the PET scan for you?

What did they say about it?

Thalmus atrophy usually has specific causes.

I'm just curious what docs are telling you. Did they tell you that you have fatal insomnia? Are you still on zyprexa and Lyrica?

 

I want to offer support because I know you are suffering, there is just so much that we don't know about your situation :(

 

Doctors ordered PET scan and told me that I have it.

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So the doctors said you have "sporadic fatal insomnia?"  That's their diagnosis?  I find that very hard to believe as you don't develop that from kindling or taking Benzos or any other drug.  The name says it all....sporadic...it just happens for no known reason.  On the other hand the genetic form is only possible if you are in a family tree that had it and there are not very many families that carry the gene that causes genetic fatal insomnia.
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[1d...]

So the doctors said you have "sporadic fatal insomnia?"  That's their diagnosis?  I find that very hard to believe as you don't develop that from kindling or taking Benzos or any other drug.  The name says it all....sporadic...it just happens for no known reason.  On the other hand the genetic form is only possible if you are in a family tree that had it and there are not very many families that carry the gene that causes genetic fatal insomnia.

 

Maybe it is just a coincidence that’s why benzos almost never worked for me. They said that I can’t sleep because of damaged thalamus and whole limbic system I’m not feeling aware or awake through the day it is like my brain is sleeping already when I’m awake (asleep and  awake at the same time). And that feeling is worse and worse everyday my sleep just disappeared completely a week ago, I’m month and a half off benzos and I’m getting worse instead of better. My brain functions are less everyday. I’m feeling totally brain dead, my memory is crazy, short term and long term, both are affected. (Totally lost both) I don’t understand that anymore. Acute should be over by today but it is not I’m getting worse and worse everyday, i font even know which day is today and which date, I don’t remember my whole past, I can’t form new memories. I hope that my limbic system is only damaged By benzos and it will repair. I’m not even able to think my cousin wrote this; I’m not even able to form words out of my mouth because I can’t think at all, I’m almost mute. I can’t even write with my hands and a pen.

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How long have you had sleep issues?

 

People with sporadic fatal insomnia don't last very long and exhibit other neurological symptoms prior to losing their sleep.  Plus Benzos DO NOT work for people with fatal insomnia, so if they ever worked for you, that proves you don't have it.  1.5 months off is way too early for almost everyone to show signs of improvement.  Acute doesn't suddenly end on a certain day.  It can last up to 90 days or longer for some.  Since you said you kindled 10 times it might last way longer for you?

 

Others have had similar memory and physical issues just like you and to the same degree or even worse and eventually recovered.  In fact, someone just wrote a success story after being bed ridden for 3 years.  You are still on ADs and other drugs that can mess with your brain and memory.

 

IMO, I would taper off everything you are on and give your body a chance to heal.  It can't heal properly when you are still on Rx drugs.

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[1d...]

How long have you had sleep issues?

 

People with sporadic fatal insomnia don't last very long and exhibit other neurological symptoms prior to losing their sleep.  Plus Benzos DO NOT work for people with fatal insomnia, so if they ever worked for you, that proves you don't have it.  1.5 months off is way too early for almost everyone to show signs of improvement.  Acute doesn't suddenly end on a certain day.  It can last up to 90 days or longer for some.  Since you said you kindled 10 times in might last way longer for you?

 

Others have had similar memory and physical issues just like you and to the same degree or even worse and eventually recovered.  In fact, someone just wrote a success story after being bed ridden for 3 years.  You are still on ADs and other drugs that can mess with your brain and memory.

 

IMO, I would taper off everything you are on and give your body a chance to heal.  It can't heal properly when you are still on Rx drugs.

 

I’ll taper off when this withdrawal is little bit better I can’t now because I don’t sleep at all right now. I’ll taper off everything when I get a bit better. Benzos only worked for a month and a half and then when they start working they took me off them and again and again and they stopped working completely even if I take 7.5mg of Ativan it doesn’t do anything do you think my GABA receptors are burned out from many CT and that is why they stopped working? Benzos worked for people with fatal insomnia at the beginning but they stop working all together in time, at 18 months since my insomnia started I almost completely lost an ability to sleep, my brain started switching off I didn’t find anybody that would have that feeling from benzos. I have neurological issues I lost my motor functions.

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You were on high doses.  Benzos down regulate GABA and replace the normal function of your GABA receptors.  When you remove the Benzo, which you have done many times, your GABA receptors don't do anything.

 

Remember that GABA receptors are a neurotransmitter that make you calm and relaxed or what I like to call your body's brake pedal.  Glutamate is also a neurotransmitter that makes you active and alert and even fight or flight or what I like to call your body's gas pedal.  Normally GABA and Glutamate are in a balancing act so one doesn't overtake the other.  However, the Benzos have temporarily taken your GABA offline.  Now Glutamate rules the day and night.  That's why you can't sleep even though you might feel very tired. 

 

Your GABA can't heal as long as you are still taking drugs that could mess with them?  If you are getting no benefit from the other drugs, why wait to taper off of them?  They are doing nothing for you?

 

 

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[1d...]

You were on high doses.  Benzos down regulate GABA and replace the normal function of your GABA receptors.  When you remove the Benzo, which you have done many times, your GABA receptors don't do anything.

 

Remember that GABA receptors are a neurotransmitter that make you calm and relaxed or what I like to call your body's brake pedal.  Glutamate is also a neurotransmitter that makes you active and alert and even fight or flight or what I like to call your body's gas pedal.  Normally GABA and Glutamate are in a balancing act so one doesn't overtake the other.  However, the Benzos have temporarily taken your GABA offline.  Now Glutamate rules the day and night.  That's why you can't sleep even though you might feel very tired. 

 

Your GABA can't heal as long as you are still taking drugs that could mess with them?  If you are getting no benefit from the other drugs, why wait to taper off of them?  They are doing nothing for you?

I get some fake sleep from them, otherwise I would already be dead without ever sleeping, I never feel tired or exhausted just brain dead from a lack of sleep, I don’t even feel fully awake through the day it’s like I’m sleeping all the time. I’m not on any GABA drug, so they are not affecting my healing.

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Your docs should order a Polysomnography.

It's one of the main things they do if they suspect fatal insomnia...

I know because I had it done.

They actually ran mine for 24 hours instead of just 8 hours like a sleep study

That way they can see your brain activity at all times and see what kind of sleep cycles you are getting if any at all. It's much better this way than just a normal sleep study....which I couldn't do either because I wasn't sleeping.

 

Ummmm it really should be the very next thing they do!

 

And I do also agree that you have other rxs that do not help

Zyprexa is the worst for making your brain feel blank :(

Add that to the horrible stupor that happens after so much loss of sleep is not good.

I am so sorry for your situation :smitten:

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You won't die from lack of sleep, but you will be miserable for a time while your brain heals. But it can't heal while you're still on meds. Many people here went for months with little to no sleep. It's going to be hard but necessary for your brain to learn to sleep on its own again. You will heal but it will take time, acceptance, distraction, faith, and other coping skills (e.g. meditation, prayer, stretching, deep breathing exercises).
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[1d...]

You won't die from lack of sleep, but you will be miserable for a time while your brain heals. But it can't heal while you're still on meds. Many people here went for months with little to no sleep. It's going to be hard but necessary for your brain to learn to sleep on its own again. You will heal but it will take time, acceptance, distraction, faith, and other coping skills (e.g. meditation, prayer, stretching, deep breathing exercises).

I’ve lost all my sleep a week ago, I won’t get it back, I don’t sleep at all they were right I have fatal insomnia.

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You won't die from lack of sleep, but you will be miserable for a time while your brain heals. But it can't heal while you're still on meds. Many people here went for months with little to no sleep. It's going to be hard but necessary for your brain to learn to sleep on its own again. You will heal but it will take time, acceptance, distraction, faith, and other coping skills (e.g. meditation, prayer, stretching, deep breathing exercises).

I’ve lost all my sleep a week ago, I won’t get it back, I don’t sleep at all they were right I have fatal insomnia.

 

Practice self compassion. What would you say to a dear friend in the same situation? Practice self care and pick some easy coping skills. Read Baylissa’s book Recovery and Renewal for some coping skill suggestions. You’ll get through this.

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