Sleep Disorders Community
Fear I have Fatal Insomnia progressing!
About This Community:

This patient support community is for discussions relating to apnea, children’s sleep issues, jet lag, insomnia, narcolepsy and snoring.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Fear I have Fatal Insomnia progressing!

I have experiencing persistent insomnia for the last 3 years. Since I was a child I was diagnosed with neurological sleep apnea and parasomnias during sleep, especially in periods of intense stress. Basically, I delayed entering sleep and in a brief period between sleep and wakeness I felt unable to move and breath and feel abnormal heartbeats. i had to completely wake and then try again to sleep. This seemed manageable. The big problem started three years ago. In a period of exams I couldn't sleep. I passed the exams but insomnia remained. Did polysomnography for two nights couldn't sleep with the lights and the cables. Stayed in the hospital for 5days, EEG normal. I have been prescribed with Interal (shortly) Rivotril (shortly) Ladose, Zoloft, Quepin, Xanax, Lyrica, Remeron and Circadine. I switched these drugs and the max was no more than 3 at a time usually 2. At a time the solution, Quepin and Remeron and Ladose worked, however short periods of insomnia occured. I did psychotherapy, because my phobias for death increased, I even had suicidal thoughts, being tired and desperately wanted to sleep. The last seven months problems started to worsen, I could sleep only one night in a week, can't go to deep sleep at all, sometimes I feel like having microsleeps of 5 mins 24hrs and can recall small dreams, Im not sure whether these are dreams and not thoughts! Sometimes i get headaches and I am totally unable to sleep. I've searched encyclopedias and the Internet and I found  that i may suffer from Sporadic Fatal Insomnia. Can you give me some advice, especially if you're an MD. I am like a zombie and feel helpless. Thanks!
3 Comments Post a Comment
Blank
Avatar_f_tn
I can relate to you ... For over a month and a half I have had not been able to sleep either only 1-3 hrs if I'm lucky a night and i keep waking and i always have dreams and wake when there over so i been going stright into REM type sleep i also am not sure if i am really asleep or I am just imagining this all in my mind while being awake .. I have muscle twitchs I've tried ambein triazolam hydroxyzine otc meds buspar nothing has worked much ambein gave me maybe 3-4 hrs if I lucky ... I think i also have FFI .. the good news for you is that from what I have learn EVERYONE who has FFI or SFI dies in less the 12-18 months you have had this for 3 yrs so i think you don't have FFI ... And medicine also worked for you right .. people with FFI medicine doesn't work like my case ... So i doubt you have that don't gotta worry about it but in my case it only been a month and medicine don't work for me ... I hope the best for u ... But u went 3 yrs that's over the time limit I've read a lot about FFI believe me
Blank
Avatar_dr_f_tn
Hello and hope you are doing well.

Please stop worrying, that would be the first step to sleeping well. You should not keep thinking about sleeplessness, as this in turn promotes insomnia and it becomes a vicious cycle.
Humans are born with basic needs and the body responds to that. Just adopt the normal rhythm and the natural flow.

There is a circadian rhythm for all living organisms. It is a 24 hour cycle rhythm and the biological clock within that individual adapts to this rhythm. If you observe this rhythm, the transition happens gradually, like the daylight subsides slowly into darkness and the sounds too gradually mellow down into the night. These changes condition us and promote sleep. So, simply imbibe this and transcend to sleep normally/naturally

Hope this helped and do keep us posted.
Blank
Avatar_m_tn
I have managed to get enough sleep, currently I m good, sometimes I lose it again, and when insomnia stays these worries come back very intense. I am a very sensitive person when it comes to sleep and stress intolerant. Hope you are all well in health this is a wish from the bottom of my heart. Thanks for all your messages, don't lose hope, you really encouraged me. Wait to hear from you again!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Sleep Disorders Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Sleep Disorders Answerers
612551_tn?1247839157
Blank
Jerry_NJ
NJ
1622896_tn?1402351966
Blank
bobdylan1958
Outside London, United Kingdom
Avatar_f_tn
Blank
skydnsr