Sleep Disorders Community
Fatal Insomnia?
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

Fatal Insomnia?

Hi! I've been having early-waking insomnia for over a month now. It started very suddenly, and has basically been the same ever since - I sleep 4-5 hours a night, no matter when I go to bed, and wake up feeling un-rested. When it started, I wasn't under any stress and I was feeling OK - it just came out of the blue. But since it started, I have had severe anxiety/panic, appetite loss, rapid weight loss, complete impotence, elevated heart rate, and slight fever.

My question - could this be Sporadic Fatal Insomnia?

I know the only definitive test for that rare disease is a PET scan, but no doctor is willing to order me a PET scan. How can I determine whether or not I have this terrible disease before it makes me unable to function?
Related Discussions
10 Comments Post a Comment
Blank
Avatar_n_tn
jus let me kno whats   goin
Blank
Avatar_n_tn
Please do yourself a favor and not go directly to the worst case scenario without having considered everything in between first. It's counter productive to the calm you need to sleep. While it is not good for you, you can survive on 4-5 hours a night. I personally have gone a couple years on about 2 restless hours a night. With my sleep disorders treated it's still not optimal, but tolerable.

Occasional temporary insomnia happens to most at some time or another. If it persists, a sleep study can be useful in identifying any sleep disturbing disorders. Some meds are known to disrupt sleep, as well as some mood disorders, and also things like sleep apnea or limb movements. You have every reason to presume your insomnia is temporary or at least treatable.  
Blank
Avatar_f_tn
I've considered alternate explanations, but nothing seems to make sense. I'm not hyperthyroid, diabetic, I don't have heart problems, I have good sleep hygiene. The condition came on suddenly, with no warning, and has been constant ever since.

Could it be anxiety/OCD? Maybe. Other than that, Fatal Insomnia is really the only consistent explanation.
Blank
Avatar_n_tn
Sporadic fatal insomnia is very rare. It is also extremely slow in its progression. So, your rapid "decline" would lead away from this diagnosis.

Yes, anxiety can produce the symptoms you describe. The physical symptoms of anxiety are very real and can be frightening. See someone that specializes in treating anxiety/OCD.

Best to you.
Blank
Avatar_f_tn
Yes, sFI is slow in its progression. However, I had concentration problems, periodic panic attacks, and some erectile dysfunction for almost half a year before th sudden onset of the insomnia symptoms. Isn't that consistent with the first stage of Sporadic Fatal Insomnia?
Blank
Avatar_n_tn
The 1st stage of the disease starts off with the sufferer dealing with increased insomnia leading to panic attacks and phobias. You say that ~6 months before the onset of sudden insomnia you had concentration problems, periodic panic attacks, and some sexual dysfunction. These are all symptoms of stress. Sporadic fatal insomnia is a type of insomnia that is not caused by stress. This, in addition to your rapid “decline” from the onset of your sudden insomnia, would not be consistent with the condition. It would make more sense that you have anxiety/OCD.
Blank
Avatar_f_tn
Well, JoJo742, we're about to find out for sure. I am getting a PET scan tomorrow, which should rule out or confirm the presence of Fatal Insomnia. I'll let you know the results.
Blank
Avatar_f_tn
I'm a 31 year old female who has been dealing with choinc insomina for ten years. It is really awful to live with. First the doctor tried to say it was anxiety and then hormones. I'm so tried of it. I have trouble getting to sleep, staying asleep and not very many hours of sleep. I also have tingling and burning in my legs. I'm so scared I have sporadic fatal insomina. I was just curious if found out if you have it or not. I just had a sleep study done so I'm curious what they find out. I"m scared. Do you think I could have it? IS 19 to ealry for the onset of the disease?
Blank
Avatar_n_tn
If it has been going on  for ten years, it's extremely unlikely that you have SFI. The duration of that disease runs into weeks and months, not years. I hope that you don't worry yourself ill about having a disease that you don't have, and that you find a way of falling asleep quite soon. Good luck:).
Blank
Avatar_m_tn
I have it.... I do not sleep ... At all.... 53 female kimberly crutchfield daughters name barbara vannoller 731-313-1312
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Sleep Disorders Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
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
Top Sleep Disorders Answerers
612551_tn?1247839157
Blank
Jerry_NJ
NJ
1622896_tn?1418684976
Blank
bobdylan1958
Outside London, United Kingdom
1780921_tn?1416842066
Blank
flipper336
Chandler, AZ