Insomnia - increasing over months

[AndrewCanada]

Hey everyone.

Was wondering if anyone could provide some context or put my mind at ease a little bit. Over the past few months or longer, I've been getting progressively less sleep to the point where now I am only getting 30 minutes if that, at a time.

It's making me feel like a mess.. and on top of my heart fears are the fears of sporadic fatal insomnia.

I'm at the point now where I act delusionally. Will repeat things to my wife over and over throughout the entire day, will yell I'M INSANE I'M INSANE I'M INSANE over and over again --- and my ability to live has gone completely down the toilet. I literally act like a child now most of the time where the only thing I can think about or mention is my mental state.

On top of that, I am supposed to start Zoloft, but am afraid because a common symptom of using that is insomnia. I just want to live again but considering I keep getting less and less sleep, I don't know how much more my mind and body can take (especially considering my delusional actions and statements --- starting to get really superstitious about things, for example, to the point where I get angry at my wife because she sarcastically suggested "whatever you want" when I kept barraging her with this mental stuff about my lack of sleep).

Does anyone have any context or can anyone help me snap out of this fear that I am losing my mind / that I have fatal insomnia?

:weep:

---------- Post added at 09:45 ---------- Previous post was at 09:02 ----------

Also, I read that with fatal insomnia that sleeping meds won't work. I've taken Ativan but it does nothing (I've been on it before and it's knocked me out for eight hours)... but now, it is like I haven't even taken any medication whatsoever.

---------- Post added at 12:27 ---------- Previous post was at 09:45 ----------

Does anyone have any advice? : /

[Fishmanpa]

First off you don't have SFI.. you just don't.

Advice: Start the meds, they will quiet your mind. Seek out a therapist and start treating the illness you do have.

Positive thoughts

[AndrewCanada]

First off you don't have SFI.. you just don't.

Advice: Start the meds, they will quiet your mind. Seek out a therapist and start treating the illness you do have.

Positive thoughts

Thank you and I hope you're right and I know how illogical it might seem, yet I keep thinking to myself about my worsening insomnia over months, preceded by my mental decline. Sometimes I wish there was something that could just give you piece of mind with certainty.

I've done far too much reading about this. Lots of people on here have transient, temporary insomnia that lasts a week tops. SFI is impossible in those cases --- but of course my thought pattern keeps thinking "well, combined with my other symptoms and months of worsening mental state, what if?"

It's a terrifying thing to think. So I hope you're right.

[AndrewCanada]

I got another night of no sleep... and I find my mental state is deteriorating....

---------- Post added at 09:14 ---------- Previous post was at 08:44 ----------

If anyone has any idea of what to do or think I’m all ears.......... beginning to lose hope of ever getting better and having some pretty disturbing thoughts about suicide (thankfully not about doing it, just thinking about it)

[Hypo27]

No there’s no way you have this. You do realize that their have only been like 10 cases ever reported of sporadic fatal insomnia?

[AndrewCanada]

It is just my illogical side speaking to me. I know this yet I don’t know this. My wife found out that I wasn’t taking the Zoloft for the past month like I said I’ve been doing and rightfully feels betrayed. So I forced myself to take it right in front of her. We’ll see what effect this has on sleep. Thank you for the reassurance.

[Fishmanpa]

I took Zoloft for around 6 months for some depression after my 1st heart attack. Other than a dodgy stomach, I didn't have any side effects. Just know that it can take a few weeks until you stabilize on it.

Look into therapy. Based on what you said: "I keep thinking to myself about my worsening insomnia over months, preceded by my mental decline".

Based on that, it's the anxiety that's causing it. Look, I had a firestorm happen at work yesterday. Guess what? I slept like poo thinking about it. I'm fixing it and will sleep like a baby tonight. Fix your head by taking the meds and therapy. I assure you'll start sleeping better.

Positive thoughts

[ServerError]

I recently started back up on sertraline/Zoloft for the second time and on both occasions it has been a godsend for me. When it works for you, it tends to really work. But it can be difficult in the early stages, as I've found both times. You just have to plough through that.

There are things you can do with regards to insomnia. Take a look at your routine. Try to rise at the same time every day, even if you still feel sleepy. Similarly, try to go to bed at the same time each night. Try to spend two hours before going to bed winding down and relaxing, and get away from your phone and screens. Make sure your sleep hygiene is good. Beyond that, talk to your doctor about it as they can offer you further advice. And above all, if you can't sleep, don't worry about it. Just accept it. Just let it be as it is. I still suffer from insomnia, but it has a much less destructive impact on me since I stopped getting worked up about it.

[Carys]

HI Andrew,

I've replied on your other thread.

[AndrewCanada]

Thanks for the replies all. I took a Zoloft in the morning and feel increased heart rate, anxiety, odd thoughts. Are these normal?

Also I still have major anxiety about sporadic fatal insomnia. Just got out of my counseling appointment and he said he was concerned about my lack of sleep. Great, way to make me feel good, counsellor. So now I’m thinking crap, if Zoloft decreases sleep and I’m already getting 2-3 hours of light dream filled sleep —- what the heck will happen to me?

I’m starting to get really nervous thoughts about what I’m capable of re: self harm. I don’t want to kill myself but am worried that these pills and my lack of sleep might give me an urge because I have been having thoughts about it. Again not doing it but just thinking about the concept.

[Sleepy]

Andrew, I really feel for you.

My anxiety and insomnia started together, I don't really know which came first, but like you, I was hardly sleeping at all.

I started on 20mg of Seroxat, coupled with Zopiclone, and after a few weeks it sorted me out. (Not that I'm promoting Seroxat here, it just worked for me at the time.) Like you, I was at the end of my tether. It will get better. Sleeplessness won't kill you. You may feel like crap, and it will get your anxiety going, but you will be all right.

I'm no expert, but I know some ADs are better than others for insomnia. After 6 years I switched to Trimipramine, a tricyclic, and I've taken a small dose of Zopiclone every night for 17 years. I've now come off Trimipramine and just have the Zop.

Insomnia is hell. Your doctor will find something that helps you. Give the meds some time. Take care.

[tryingtosurvive1]

You don't have SFI. Based on what I read about familial fatal insomnia (the kind that ran in some poor Italian family) it wasn't just insomnia, it was a dramatic dementia. Way more than what you describe, which sounds like ~~super stress~~, honestly.

I have trouble knowing what to say when people fear this disease, since it's practically non-existent.

[AndrewCanada]

I wish I could accept the reassurance but last night I got 0 hours of sleep and all that was happening was waking dreams...... and my heart is racing like crazy.....

[robin321]

I went through this over a two month period.
It was terrible and I really thought I would never sleep well again. That was 2 years ago and I have slept well for most of that time so I was wrong! I still have anxiety but the insomnia has been beaten.

What worked for me was to finally just accept that you won’t sleep. The longer you try to sleep the more you won’t. So I make myself as comfortable as possible, read a book, and lie down and have happy thoughts. I don’t let myself stress. I tell myself that this is my time. Usually I fall asleep. Sometimes I don’t though. Other keys are to not panic or get up. Not look at the clock. And not let it dominate my life. No researching insomnia dhring the day!

[Curtis]

Try out aromatherapy. Scents like vanilla and lavender can relax you and help improve sleep.:)

[AndrewCanada]

Thanks everyone.

This is day 3 on Zoloft and I’ve barely slept... will try to stick with for my wife’s sake.

Went to the Dr yesterday about my side effects (130bpm heart rate), nausea, diarrhea—- and he said he wasn’t con. I guess now I just need to find way to trust doctors. He also dismissed the fatal insomnia fear.

[Carys]

Did you ask him about increasing the lorazepam?

---------- Post added at 17:53 ---------- Previous post was at 17:50 ----------

Andrew, on your other thread 'afraid to start Zoloft' I made some comments (I'm the last post on there) about Ativan and sleeping. I don't think you've see it as you've been getting most replis on this thread.

[AndrewCanada]

He said I can take two of them per dose now but I tried and still 0 sleep :(

[Carys]

None, literally none ? Awake all night ?

[AndrewCanada]

None, literally none ? Awake all night ?

About one hour of light sleep I think. It was sort of like this before the Zoloft but it is just way worse on it

[Carys]

Andrew that's terrible ! Did you tell the doctor this? Your sleep deprivation must be horrendous by now. Surely he can give you something else ?

[AndrewCanada]

Andrew that's terrible ! Did you tell the doctor this? Your sleep deprivation must be horrendous by now. Surely he can give you something else ?

Strangely at this point I’m almost used to it. My sleep has gone down the drain the past six months to a year. Just less sleeping through the night to the point where now, even before the Zoloft, I was having the same thing. I’m not sure if my doctor knows the extent of it but I think I remember explaining it to him. He says it isn’t fatal insomnia but I don’t think he knew what it was. Also suggested a different benzo... I think clonazepam. It’s jusr getting tiring. Every day I’m trying to tell myself it isn’t fatal insomnia but every day I don’t sleep. I express my fear frequently o my wife who says I’m being ridiculous but I don’t think she knows the extent either. She thought I was asleep the other day when my eyes were wide open. So I think she believes I get more sleep than I think.

[AndrewCanada]

Update: tried taking two ativans but same result. No sleep.

---------- Post added at 09:00 ---------- Previous post was at 08:42 ----------


Update: tried taking two ativans but same result. No sleep. Also my heart is pounding. My doctor said I didn’t have seratonin syndrome but my heart rate has consistently been over 100 sometimes (like now) at 130 just sitting down.

[Mav]

Ive been sleeping very little at night then alot in the day in chunks, and it's just messing with my mental state. Starting to feel very helpless. ugh.

[Carys]

Go back to your doctor Andrew, you can't go with literally no sleep and feeling this way.

[AndrewCanada]

Go back to your doctor Andrew, you can't go with literally no sleep and feeling this way.

I’m not sure if it’s no sleep because I would think I’d start to hallucinate if that was the case. I just saw him on Wednesday though so I can’t see him again so quickly. Might give him a call though to see if we can try a different benzo or some other technique because right now this is honestly just playing into my fatal insomnia fear.

Thank you for offering an ear to listen. I really do appreciate it.

[Carys]

Oh ok, so when you say 'no sleep' you mean 'very little sleep'. Yes, your sleep deprivation symptoms would be very strong by now VERY strong if none at all. Two ativan would have me flat out for 24 hours lol So, I think I asked on your other thread....how long have you been taking ativan?

[AndrewCanada]

Oh ok, so when you say 'no sleep' you mean 'very little sleep'. Yes, your sleep deprivation symptoms would be very strong by now VERY strong if none at all. Two ativan would have me flat out for 24 hours lol So, I think I asked on your other thread....how long have you been taking ativan?

The other night and last night it was no sleep but I’m the past I think it has just been very little like 1-3 split into 1 hour chunks. Usually heavy dreaming but since starting Zoloft I haven’t been dreaming which makes it hard to tell if I’ve gotten sleep. Especially since regardless I wake up wired.

I’ve been on Ativan for around a month but have only recently started taking it during bed time.

Years ago I was on Ativan for sleep for quite some time so maybe I have an immunity to it. Doctor said I can swap out my Ativan for clonazepam if I wanted to. If my sleep doesn’t improve in the next few days or if I get more no sleep nights I will take him up on that offer

[Carys]

Yes, I would ask to change, a month is a long time to be on it. I have heard that 'tolerance' to it can happen in a week or two, hence why only short courses are given. BTW - Non-medical person that I am, just stating what my GP told me.

[AndrewCanada]

Yes, I would ask to change, a month is a long time to be on it. I have heard that 'tolerance' to it can happen in a week or two, hence why only short courses are given. BTW - Non-medical person that I am, just stating what my GP told me.

Update: I’m prettying sure I slept in chunks of two hours last night. Not sure because this drug numbs my ability to dream, but I did this without Ativan. Probably had three chunks of 1-2 hours. Knock on wood, maybe Zoloft eventually helps with sleep?

[Carys]

That's great news ! Its a good sign :D


...and you do know right.....that wouldn't have been possible with this rare sleeping disorder! (no medication works to aid in that problem)

[AndrewCanada]

Never fails though. I woke up with bad pain around my liver and it is radiating to my back.

[AndrewCanada]

Man I hate this. Sleepless night again and now I’m hallucinating...

[Carys]

Did you stop the ativan immediately and go cold turkey ?

[AndrewCanada]

Did you stop the ativan immediately and go cold turkey ?

I actually took Ativan last night because I couldn’t sleep and it did nothing. Feels like I’m in a state of waking dreams. When I close my eyes, I enter dream mode but I’m awake.

[AndrewCanada]

This is ridiculous... now on 48 hours without sleep. I feel like a lightheaded zombie and my heart is racing and beating irregularly.

[Carys]

Get back to the doctor Andrew, really, this isn't acceptable that you are having to cope with this. Can your wife take you there today, or someone else drive you ?

[AndrewCanada]

Get back to the doctor Andrew, really, this isn't acceptable that you are having to cope with this. Can your wife take you there today, or someone else drive you ?

Do you think it is cause for concern (an emergency)? I keep thinking I have sporadic fatal insomnia and the thoughts are racing through me constantly.

I will call my doctor about this.

[Carys]

I keep thinking I have sporadic fatal insomnia and the thoughts are racing through me constantly.

I know you keep thinking that, but the other night you have a much better night of blocks of 2 hours a few times. I said that this proved to you that you didn't have the rare sleeping disorder, as that wouldn't be possible.

Look, I would call the doctor, I don't think it's an emergency, but I do think you need 'something' to get some rest and ease your anxiety !

[AndrewCanada]

I know you keep thinking that, but the other night you have a much better night of blocks of 2 hours a few times. I said that this proved to you that you didn't have the rare sleeping disorder, as that wouldn't be possible.

Look, I would call the doctor, I don't think it's an emergency, but I do think you need 'something' to get some rest and ease your anxiety !

It was incredibly light sleep and it wasn't restful at all. I woke up frequently and wasn't looking at the clock so I don't know if it was even two hour chunks.

Thank you for listening and for all of the advice you've given. I'm just a basket case right now and my mental state is honestly hinging on a thread.

[Carys]

Andrew, I really haven't given much advice, just showed concern that you need something to help you sleep. I know how sleep deprivation can make you feel, physically and mentally you will feel far more unwell than you actually WOULD be if you have sleep. Everything is worse when you have no sleep, a few nights of respite and I think you could have the chance to improve your other problems. Will you be calling the doctor, ask for a different med to sleep ? The amount you are getting I would find intolerable, and NO I don't think you have a rare sleep disorder LOL

[AndrewCanada]

Andrew, I really haven't given much advice, just showed concern that you need something to help you sleep. I know how sleep deprivation can make you feel, physically and mentally you will feel far more unwell than you actually WOULD be if you have sleep. Everything is worse when you have no sleep, a few nights of respite and I think you could have the chance to improve your other problems. Will you be calling the doctor, ask for a different med to sleep ? The amount you are getting I would find intolerable, and NO I don't think you have a rare sleep disorder LOL

I think I will give it one more night and then call my doctor if I don't have any sleep... and if I can't get a same day appointment I'll go to emergency.

[MyNameIsTerry]

Andrew,

Insomnia is a pretty horrible one with anxiety as it just stops you recovering at least some of our mental reserves. I remember my different forms of insomnia and they made things so much worse and everyone who's had it will agree.

What I would say, apart from there being no chance of it being such a rare condition as SFI, is look at those who have said the same as you on here and see how things changed. For instance, CrystallHiggs went through a long period of insomnia but she found what helped her and sorted it out.

[Carys]

How you doing Andrew?

[AndrewCanada]

No sleep again. I’m afraid that I have seratonin syndrome from the Zoloft. Really agitated, diarrhea, fast HR. Can’t see my doctor today...

[Carys]

If you really suspect serotonin syndrome, and have literally had no sleep and a lot of awful side effects, and assorted physical symptoms then I would suggest the below. (taken from a reputable medical site)


If you suspect you might have serotonin syndrome after starting a new drug or increasing the dose of a drug you're already taking, call your doctor right away or go to the emergency room. If you have severe or rapidly worsening symptoms, seek emergency treatment immediately.

Nobody is there and knows how ill you are, only you, and only you can say if it is 'real' or part of your anxiety condition. I think at the least you should call the doctor and explain.

[AndrewCanada]

If you really suspect serotonin syndrome, and have literally had no sleep and a lot of awful side effects, and assorted physical symptoms then I would suggest the below. (taken from a reputable medical site)



Nobody is there and knows how ill you are, only you, and only you can say if it is 'real' or part of your anxiety condition. I think at the least you should call the doctor and explain.

Thank you, I just called and they said they will call me back when my doctor sees the message

[Carys]

Good !

[AndrewCanada]

Good !

Still no answer from the office. This is putting so much strain on my marriage because it’s all I really talk to my wife about. She’s getting fed up and I don’t know how to explain to her that even though I’m like this at the moment, that I don’t mean to hurt her. I just hope that some sleep comes tonight.

[Carys]

I don’t know how to explain to her that even though I’m like this at the moment, that I don’t mean to hurt her.You've said it right here Andrew.

Sit her down and say it just like this. Mental illness is hard on partners and families, and just by saying that you accept that it IS hard for her will help a little. Reassure her that you are working on 'being ok' and tell her that ' I don't mean to hurt you, I'm sorry for how things are at the moment'. Force yourself to talk about something else even for a few minutes, ask her about her day today ?

[AndrewCanada]

Good !

Update: a crisis counsellor saw me and they said they might keep me as an inpatient to see a psychiatrist. Also gave a heaping dose of Ativan so hopefully that does something.

They want to explore the possibility of other mental illness like bipolar. I guess we will wait and see.

Sorry for barraging the message board with these things. You’ve all been incredibly reassuring.

[AndrewCanada]

Update: they kept me overnight and gave 2mg of Ativan. I slept presumably from 1130PM to 4AM. They will have me see a psychiatrist later today. Treatment plan within reach. Now I’m going to try to get even more shit eye.

[Carys]

I'm relieved to hear they kept you in Andrew. I was concerned about how you were feeling and the physical effects you were getting. SO....on the positive side.....some sleep with 2mg of lorazepam. Yet again, showing no sleep disorder. Do update when you feel you can.


Sorry for barraging the message board with these things.

You aren't ! Considering how awfully you are suffering at the moment you are being very 'low key'.

By the way, try and get some SHUT eye, as I don't think SH*T eye does anyone much good. ;o)

[AndrewCanada]

Just had breakfast there. Cold gelatinous oatmeal with cold soggy toast and lukewarm decaf. Can’t complain, it’s free.

Just laying down now. Someone took my vitals again, and apparently I’ll be seeing that psych at some point today.

[AndrewCanada]

Just an update.

For the past five days or so I have been voluntarily institutionalized to help sort out my anxiety and to find a good antidepressant treatment.

They took me off of Zoloft and put me on Remeron (which I've been on before, but at a lower dose).

I feel pretty whacked, but after waking up this morning, I feel a bit more awake. So far my sleep is 3 hours, followed by 5-6 insta-dream light sleeps. It's something, and I'm waiting to get mirtazipine's full effect to see if I can get a restful sleep back.

One thing about this place is that it's boring. No cell phones or electronic devices are allowed aside from 15 minutes at a time on a slow computer. So I'm doing jigsaw puzzles and playing cards to pass the time.

Withdrawal symptoms of Zoloft have hit even after only 9 days of being on it, including the infamous head jolts. But I think the other side effects of the withdrawal might have been dampened since they switched me from one SSRI to another SSRI.

We'll see how this turns out, but I'm hoping to not have to spend more than a week or two in here, so that I can return to my life.

It gets claustraphobic in here quickly, and I miss friends and family. On the plus-side, the food is great. Breakfast yesterday was eggs and toast, lunch was roast, veggies, and potatoes, and dinner was some kind of chicken casserole with a banana bread for dessert.

Also my heart rate has been beating very irregularly, which is freaking me out. It regularly was measured at 130-150BPM when vitals were taken, with fluttering. So they took me for an ECG yesterday and OF COOOOURSE it isn't out of control on it, so they weren't able to catch anything. Mindfulness and relaxation exercises today will focus on telling myself my heart is just fine.

[Carys]

Hi Andrew,


Thanks for the update, its 'nice' to hear how you are getting on. It also gives a different insight into treatment when people perhaps have to have a week or so out of normal life. Presumably therefore they didn't like the effect the Zoloft was having on you - hence the change?

I wonder why they make it so boring with nothing to do? A deliberate strategy to get people to talk to staff and patients?

[AndrewCanada]

Hi Andrew,


Thanks for the update, its 'nice' to hear how you are getting on. It also gives a different insight into treatment when people perhaps have to have a week or so out of normal life. Presumably therefore they didn't like the effect the Zoloft was having on you - hence the change?

I wonder why they make it so boring with nothing to do? A deliberate strategy to get people to talk to staff and patients?

I think so, on both accounts. The Zoloft was making me agitated and the lack of things to do forces interaction. There are also no clocks in my room, which is kind of maddening.

EDIT: I've been passing time doing jigsaw puzzles, playing Solitaire and Freecell, and reading --- although my attention span and short term memory is shot from all of the drugs and changes, so reading is difficult.

[AndrewCanada]

Update: Still in the hospital. They had me on Mirtazipine and Seroquel, but I didn't respond well to the Seroquel so today they've switched me to Clonazepam.

Still not sleeping much (1 hour or less chunks) so hopefully this helps.

[Imeleedi]

Update: Still in the hospital. They had me on Mirtazipine and Seroquel, but I didn't respond well to the Seroquel so today they've switched me to Clonazepam.

Still not sleeping much (1 hour or less chunks) so hopefully this helps.

How are you feeling within yourself now mate? Do you still think it's SFI? Or have you realised it almost certainly isn't yet?

[AndrewCanada]

Still kind of battling with it but the fear isn't as prominent anymore. It's a matter of time before I realize it but the lack of sleep even on sedatives certainly doesn't help lol.

[Carys]

HIyer Andrew,

You are certainly proving 'sleep resistant' aren't you - I hope they get things right for you. I'm sure once they do that you will feel so much better and be able to confidently start your recovery. You have certainly had a lot of changes. I had that once in my early 20s and it plays havoc for a while. Is your wife managing to visit ?

[AndrewCanada]

I got discharged today because my psychiatrist and I figured there was nothing more to be done in the hospital, and that all the things we were doing to treat the problems could be done from home.

So right now I have a prescription for Clonazepam and Remeron/Mirtazipine.

Stupidly enough, as soon as I got out of the hospital I had a run of six PVCs. Just my luck, but I'm trying to not let it get to me, just by staying preoccupied.

[AndrewCanada]

Sleep has improved a lot, but I find myself getting angry and emotionally / intellectually numb on Mirtazipine, and my appetite is insatiable. - 15 days in.

This beats Zoloft, but I'm just hoping these negative side effects aren't there for the long term.

Previously when I was on the drug (7-8 years ago), I was only on 15mg, but had similar numbness. The anger is new to me. I'm someone you normally can't ever manage to piss off. Even when I do get angry, I don't raise my voice.

However, in the past week, I've gotten into yelling matches with my wife over the stupidest of things and haven't been able to think critically.

Heh. Hope it passes.

[Carys]

I'm so glad the sleep has improved. Sorry to hear though that you are struggling with these mood changes, are they a side-effect that they expect will resolve?

[AndrewCanada]

I think so. Feeling a little more mellowed out now, so I think it's improving. My sleep has declined again but at least now I'm not freaking out about fatal insomnia; just focusing on the root causes of it (my excess exposure to digital screens, overthinking, etc.).

Mirtazipine seems like a good drug. TMI, but last time I was on it, I had sexual dysfunction side effects. None of that so far, this time around. My only symptom seems to be a difficulty with critical thinking / staying on task --- but it beats being a complete basket case.

Yesterday was also my first day back at my second job (physical labour one). Had plenty of PVCs but am dealing with them better. It'll be a learning curve.

[Imeleedi]

I think so. Feeling a little more mellowed out now, so I think it's improving. My sleep has declined again but at least now I'm not freaking out about fatal insomnia; just focusing on the root causes of it (my excess exposure to digital screens, overthinking, etc.).

Mirtazipine seems like a good drug. TMI, but last time I was on it, I had sexual dysfunction side effects. None of that so far, this time around. My only symptom seems to be a difficulty with critical thinking / staying on task --- but it beats being a complete basket case.

Yesterday was also my first day back at my second job (physical labour one). Had plenty of PVCs but am dealing with them better. It'll be a learning curve.

Good to see you've abandoned the SFI fear. Coming from someone who has also severely suffered at the hands of paranoid about that particular disease you will know as I did that there really is nothing worse than it. So everything else after that which could be wrong with you doesn't seem so bad.

I found it such a liberating feeling.

[AndrewCanada]

Good to see you've abandoned the SFI fear. Coming from someone who has also severely suffered at the hands of paranoid about that particular disease you will know as I did that there really is nothing worse than it. So everything else after that which could be wrong with you doesn't seem so bad.

I found it such a liberating feeling. I haven't fully abandoned it but it's at the point where I'm much more able to put it out of my mind. Hopefully when the medication fully works itself into my system I'll have an even easier time with the mindfulness and talk therapy required to change these warped thoughts.

I'm glad you were able to overcome it though!

[Imeleedi]

I haven't fully abandoned it but it's at the point where I'm much more able to put it out of my mind. Hopefully when the medication fully works itself into my system I'll have an even easier time with the mindfulness and talk therapy required to change these warped thoughts.

I'm glad you were able to overcome it though!

Yeah, I was in a bad way man, was living on 1-2 hours sleep a night, waking up in sweats after just 15-20mins with incredibly vivid dreams, dozens per night.

Towards the end I even started to hallucinate. I was in a full blown state of panic and paranoia, which of course are all symptoms of it.

It took a long time to get back to halfway normal sleep (3 months at least) after I started to believe it wasn't SFI. I'm sure you'll get there too bro

[AndrewCanada]

Update: things were fantastic for 2-3 weeks, and now (1.5 months later) I feel like my medication isn't working any more. I'm getting intense fears as I write this, focused around my heart and my brain, and my wife is noticing me tailspinning again.

Are anti-depressants supposed to take away the anxiety? Or is it up to you to be the one to think positively? Because at first I was on cloud 9. Now I feel hazy, I'm not sleeping again (even using mirtazipine + clonazepam on Dr.'s recommendations), and my fears are coming back with a vengeance.

[Pat1969]

I know this post is quite old,but did you ever sort your sleeping problems out?

[AndrewCanada]

I know this post is quite old,but did you ever sort your sleeping problems out? Yes, I have, thank you. Mind you, my sleep is still crappy, but it's because I have poor sleep hygiene. I use digital screens a lot, exercise right before bed, eat before bed, and have naps after 6PM lol

[WiseMonkey]

Lack of sleep and then the thought of not sleeping can cause bad anxiety and depression.

I suggest you see your Dr again for a review, as zoloft may not suit you. There are plenty of others to choose from.

I didn't sleep for 4 months many years ago (when I had young children). I developed severe depression and it took 3 or 4 types of antidepressants before once suited me and I began to sleep again. Back then it was the tricyclic antidepressants (which still suit me, I can't take ssri's) which finally lifted my depression enough so that I could sleep. After a week of sleeping, I was almost back to normal and my depression fully lifted. Even after this there were times when I wouldn't sleep until 3 am but I stopped worrying about it so much.

[HelloPanda23]

Yes, I have, thank you. Mind you, my sleep is still crappy, but it's because I have poor sleep hygiene. I use digital screens a lot, exercise right before bed, eat before bed, and have naps after 6PM lol

Also, if you’re still not convinved about whether you have this terrible disease, then I’ll assure you that you don’t. The sporadic version of this disease has only ever had 7-16 cases ever, world wide. This means the chances of getting it are around 1/1 billion based on the accurate amount of cases. You assume you had it due to insomnia, but that’s not how it works. You first have many cognitive issues that make it almost impossible for you to stand up, hold things normally, and etc. If you can do every normal thing you used to, then don’t even worry that your insomnia is caused by SFI. If it truly was SFI, you wouldn’t be here making posts. Second, there is only one way a person is likely to get fatal insomnia due to how advanced our world is nowadays, and so that one way is through family genes. Sure, there is a sporadic version, but that is super rare because of how a person gets it. I’m a bit stuck in the fear of getting this, but I know I won’t and neither will you, and so I did research. To get the protein that caused this disease, you must first off, recieve tainted blood. If you’ve recieved blood from someone else, and it was contaminated with this protein, that’s one way to get it. This will practically never happen because of how medically advanced we are nowadays. Second, you can get it through having head surgery. If you have surgery in your head, and that causes an issue, it can cause this protein to affect you. The third way is through eating meat contaminated with mad cow disease, and this isn’t possible anymore due to the UK banning people from feeding other animals to cows. This is even more impossible in the US because we never had an issue like this to begin with, according to my knowledge. The final way is if you’ve had terrible head trauma, such as bleeding, an anuerysm, and etc. If you have had none of these, it is entirely impossible for you to even stand a tiny chance of getting this horrific disease, and so rest easy. I understand your concerns, and I’m still here afraid of this disease as well, even though I know I can’t have it. It sucks, I know, but don’t let it get to you and google how to get a good sleep hygiene along with what medications suit you best to let go of this very very very irrational fear.

[AndrewCanada]

Lack of sleep and then the thought of not sleeping can cause bad anxiety and depression.

I suggest you see your Dr again for a review, as zoloft may not suit you. There are plenty of others to choose from.

I didn't sleep for 4 months many years ago (when I had young children). I developed severe depression and it took 3 or 4 types of antidepressants before once suited me and I began to sleep again. Back then it was the tricyclic antidepressants (which still suit me, I can't take ssri's) which finally lifted my depression enough so that I could sleep. After a week of sleeping, I was almost back to normal and my depression fully lifted. Even after this there were times when I wouldn't sleep until 3 am but I stopped worrying about it so much. This is an old thread. I'm on mirtazipine now, and am thriving (working full time, volunteering, and doing my normal hobbies). This is great advice though for someone who is still trying to find the right medication!

---------- Post added at 19:48 ---------- Previous post was at 19:45 ----------


Also, if you’re still not convinved about whether you have this terrible disease, then I’ll assure you that you don’t. The sporadic version of this disease has only ever had 7-16 cases ever, world wide. This means the chances of getting it are around 1/1 billion based on the accurate amount of cases. You assume you had it due to insomnia, but that’s not how it works. You first have many cognitive issues that make it almost impossible for you to stand up, hold things normally, and etc. If you can do every normal thing you used to, then don’t even worry that your insomnia is caused by SFI. If it truly was SFI, you wouldn’t be here making posts. Second, there is only one way a person is likely to get fatal insomnia due to how advanced our world is nowadays, and so that one way is through family genes. Sure, there is a sporadic version, but that is super rare because of how a person gets it. I’m a bit stuck in the fear of getting this, but I know I won’t and neither will you, and so I did research. To get the protein that caused this disease, you must first off, recieve tainted blood. If you’ve recieved blood from someone else, and it was contaminated with this protein, that’s one way to get it. This will practically never happen because of how medically advanced we are nowadays. Second, you can get it through having head surgery. If you have surgery in your head, and that causes an issue, it can cause this protein to affect you. The third way is through eating meat contaminated with mad cow disease, and this isn’t possible anymore due to the UK banning people from feeding other animals to cows. This is even more impossible in the US because we never had an issue like this to begin with, according to my knowledge. The final way is if you’ve had terrible head trauma, such as bleeding, an anuerysm, and etc. If you have had none of these, it is entirely impossible for you to even stand a tiny chance of getting this horrific disease, and so rest easy. I understand your concerns, and I’m still here afraid of this disease as well, even though I know I can’t have it. It sucks, I know, but don’t let it get to you and google how to get a good sleep hygiene along with what medications suit you best to let go of this very very very irrational fear. I'm definitely convinced I don't have it or else I'd probably be dead by now (the disease has a fast progression). Keep your head up, although the anxiety sucks, I'm glad that there is someone that understands what it's like to fear this disease.

What I've learned is it truly is mind over matter. People kept telling me that at my worst, and I shrugged them off, saying that things are never going to get better. Now, I'm standing here on a road to recovery and realizing that they were right all along.

All the best!

[Rennles]

I know that this is old, but wow, everything that you went through I'm going through exactly right now. I'm debating going to an inpatient facility but I'm so conflicted and intimidated. I have kids so I'm afraid to leave them. Did you feel that it was especially helpful for your recovery?