SFI please help, fear I will die

[Worrier97]

I posted a couple of weeks back about severe insomnia that I'm suffering from. I'm so lost now. I have lost the ability to fall asleep completely and for the past couple of weeks I have been getting about 20 minutes of dream sleep a night. I've taken 7.5mg of Zopiclone and it had barely any effect, just made me feel a bit groggy.

The reason I'm not sleeping is because every time my body attempts to shut off, my heart slows down to such an extent that my brain registers it and responds by panicking and speeding my heart back up. There is absolutely nothing that I can do about this and no matter where, when or what time of the day I attempt to fall asleep, the same thing happens.

I just feel numb now from this. I don't even have the energy to scream or cry or anything. But I'm utterly convinced that I have sporadic fatal insomnia. The situation is completely beyond my control. I don't want to die of such a horrible death. All I can do for now is exist in the moment and stay calm, but the idea of the future makes me sick. I don't know who can help me, the Doctor just gave the generic advice and prescribed pills. I feel like my brain is irreversibly damaged in the sense that I have trained it to react to the sensation of falling asleep by waking me back up. Do you think there is anybody who can help me?

[lscmichelle]

is it because of a particular worry that leads to the insomnia? Usually when I have really bad health anxiety i can't asleep at all..

[Worrier97]

No, it started with general stresses about not getting enough sleep to the point where I'd consciously keep jolting myself awake as I'd drift off. I did that so much that now it happens involuntarily and so I get no sleep at all.

[Fishmanpa]

Despite what Dr. Google has told you, this is so incredibly rare and also genetic in nature. Taking that into consideration and the fact you're posting here leads it to be ASI (anxiety stress related insomnia) with the addition of hyper-focusing.

Positive thoughts

[KeeKee]

I've a relative who has had terrible Insomnia for a few years now. They say they only get a couple of hours every few days. No doctor is worried about it. They've been given melatonin to see if that helps.
Many, many people suffer with Insomnia. It must be awful, but will not kill you.

[James160]

I am in almost the exact same situation where recently, I have been trying to reset my sleeping pattern, and even though i have been successful, I still feel tired and groggy due to the constant drifting in and out of sleep.

Last night i slept at 9.00pm and woke up at 2.20am, after realising that it was still the early morning and I that had only slept for 5 hours, I panicked, my body started to tremble and i was certain that was to forever struggle with staying asleep (As in the past two days prior, i had only had 6hrs) my palpitations came and they wouldn't stop, not until i forced myself to think 'Hey, It's only 3.00am now, you have plenty of time to go back to sleep, and if not? you're not doing anything tomorrow, just sleep then'

Lo and behold i finally drifted back off and the next time i looked at the clock, it was 5.20am, after 20 minutes or so, I fell asleep again. I did keep drifting in and out throughout these hours until finally waking up at 6.30am, but I found comfort in knowing that my body was just adjusting to not only the new sleep cycle, but the fact that i had actually controlled my negative pattern of thought.

Sometimes we just have to let go, and in your case, you have to understand that SFI is nothing to be worried about, this disease is incredibly rare. I posted about the exact same thing and to quote the man who replied to my own " This is one of the rarest diseases known to man. You don't have it and you never will. You need try and free yourself of this fear because even if you don't have it, you're still allowing the condition to affect your life by fretting about it. "

Hope you feel better soon.

[Worrier97]

Thank you everybody for the reassurance. I now realise that I don't have sporadic fatal insomnia as this is an incredibly rare prion disease and insomnia is only a symptom of the disease, which usually occurs after the presentation of other severe neurological symptoms.

You're right James, it's very easy to get caught up in a negative thought pattern regarding sleep. I do still worry a lot about how my insomnia will effect my health in the future, but I try to accept my situation and am using mindfulness techniques in order to prevent me from getting too caught up in my thoughts.

My Doctor assured me that this wouldn't kill me and I guess I have to trust her, even though sometimes it's hard not to have doubts! Thanks again everybody for the reassurance.