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?
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.
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.
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?
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.
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?
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:).
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.