[chiefsfanj9]

Hi, my name's Josh, I'm 25 years of age, and was perfectly healthy before all this, except for some swollen nodes under my ears that would get sore every once and a while. I have a horrible issue here and think I may have a severe neurological disorder or fatal insomnia and possibly dying. This is my third bout with this and I'll explain what's going on now and when it all started. Currently, I haven't slept in 5 days...none. It started 8 days ago with a bad night of sleep, which got worse over the next two days until the point I haven't slept in 5 days. My symptoms are constant muscle twitches, head tilt feeling, strange sensations(like tingling or numbing) on the right side of my head, feeling like I'm bring pulled to the right when I walk, and the left side of my face has a sag to it. This all started in January of 2013. I've had all kinds of tests done and nothing was found: mri, spinal fluid, ct scan, eeg, and nothing was found. I'm so scared and don't know what to do and neither do doctors. I'll explain how it started.

I had caught the flu and had it for about five days at the time. While I contacted the flu, I was also taking a pro hormone called Epistane(anti-estrogenic anabolic), which I continued. It all started on one night(the previous night I had a bad fever). I remember I fell asleep, I then woke up about 2 hours later to a door closing. As I was falling back to sleep I felt these swaying, back and forth feelings in my head. I opened my eyes and it literally felt like my brain was shaking back and forth in my head, I couldn't balance, as my body was shaky and I had to hold on to things. I would force myself to wake up fully and it would stop. Every time I tried to fall asleep that night and the next, It would happen. After that, I totally lost the ability to sleep for 3 weeks.I also had one pupil that was bigger than the other during this time. No matter how tired I was or how hard I tried I couldn't sleep. I developed severe muscle twitches and head tilt, which continue to this day. I slowly got better, little by little, after three weeks
Starting with an hour here and there, then to the point I was basically normal for 10 months, but with the twitches and
tilted feeling. I tried another hormone and anti estrogens last February and the same thing happened two weeks in. I convinced myself it was the flu before starting. I lost my sleep ability for 1 week that time, but then slowly got better. The muscle spasms and head tilt continued and other than that I felt fine and slept good. Now all of sudden I had a raging total insomnia hit me out of nowhere, but this time there was no brain or body shake feeling. I just lay there trying to sleep and start to sweat even when it's cool. Sometimes my arm will jerk to, along with the spasms. PLEASE HELP! I don't know what to do. I think I may have sporadic fatal insomnia. The only calm I get I'd that sfi is progressive, I started sleeping fine, this has been going on for 19 months, and started suddenly. I have a bad tilted feeling and feel like I need to hold the keyboard sideways when typing. My metal function seems to be getting worse too. Again, please give me your thoughts. I just want it to stop and I fear for what may be happening. I just can't sleep and my muscles keeps twitching. Hopefully it goes away this time like before and I just start sleeping again eventually, but it's something neurological and sleep just isn't possible. I know this sounds crazy, but it's 100% the truth. I was doing well and took a job overseas. My confidence, ambition, and everything else was all good. just the tilt and twitches was present, but I slept good most night.I'm so terrified here. I don't even have any family around me, which feels horrible. If something bad is happening here, which it certainly seems so, I really want to spend my last days with them. I have a great family and had a great upbringing. I just miss them so much now. I've talked with them and may take emergency leave to go back home within a couple days. May my competence still be with me to do that. This is just some mystery issue that none of those tests could identify. The only other test would be a PET or SPECT scan. I appreciate any responses very much. All the doctor's seem to not know what to do and don't care, as the tests showed nothing. I went to the gp 3 days ago and he noticed my facial sag and twitching. That's been here in qtar and in Florida is where I had all the other test done. I can feel the mental decline as it's been 7 days since I've slept now. I just have to get the right test done, but this whole process is long and drawn ot. I the the pet scan or what ever other tests to figure out what this is. there has to be someone and some test to figure this out. I hope it's not to late. i don't know if this is a severe neuro disorder, spf, or some disease such as lyme or MS, maybe huntingtons'. I just don't knoe...PLEASE help.

[Kitt]

Welcome chiefsfanj9.

Someone will be along to help.

[chiefsfanj9]

Thanks Kitt. I'm really scared here as I don't know what's going on now, when it happened the first time or the second either. I literally haven't slept in 7 days now, but what worries me most is that there was no brain shake episode to trigger it this time. I don't even feel tired now, but wired. I tried researching on what's wrong with me, but my concentration and memory are so bad from the lack of sleep. Even when this happened before, I slowly got my sleep ability back. I never just crashed.

[chiefsfanj9]

I feel that last night I finally got just a little sleep. I closed my eyes during a movie and then opened them an hour later. That groggy feeling you get after you wake up was present. After that, I closed them again and opened them to it being 1 1/2 hours later with the tv still on. I felt a little bit better mentally. Finally, I turned the tv off around 12-12:30(can't remember), and before I knew it, it was 4:30. I remember a dreamt some too. I tried to go back into my so called sleep, but couldn't even though I was still tired. I do recall smelling things that weren't there every time I woke, such as smoke or hair spray.... really weird. I don't know why I just keep losing my sleep ability. I mean, that's exactly what it is. Before all this happened with the flu, I couldn't keep myself from getting a deep sleep no matter how stressed, nervous, or whatever I was. This forces me to stay up, giving me the complete inability to sleep no matter what. I have to figure this out. This doesn't sound like sporadic fatal insomnia does it? This hasn't been progressive and my sleep got back to normal, completely, both times before this.I was on day 10 with no sleep and think I may have had a little bit last night, but question it. Why could this be happening? I was sleeping just fine, before each time this has happened, except this time there was no brain shakes to accompany it. Please help me on this. Fatal insomnia is progressive and doesn't just go away for a year and doesn't start with a sudden complete loss of sleep.

[anon1028]

I have problems with sleep from a brain injury. it has gotten better over the years but when it first started I had problems similar to yours though not at extreme. I've never heard of a flue virus affecting the nervous system and I think the pet scan is a good idea. I don't remember if you have taken prescription drugs to help you sleep. I'm glad you got some sleep last night. keep us posted. also you might want to throw this question to mark in Idaho in the brain injury room. he knows a ton of information and might be able to help. try not to be scared and don't lose hope

[chiefsfanj9]

Thanks for the response. Would you say it doesn't sound like sporadic fatal insomnia? It went away and SFI wouldn't just go away, nor would it start off with total insomnia I don't believe. I have the constant spasms and tilt, but no pin price pupils, or other sides. This has cost me my job, as I just resigned yesterday, due to bring unfit for duty from my 10 day total insomnia run. Each time this happens it slowly seems to normalize, I just hope that's the case this time. Does your insomnia come in bouts or is it constant?

[Lara]

Hi Josh,

Isn't Sporadic Fatal Insomnia a genetic disorder?
Has anyone else in your family died from sporadic fatal insomnia?

Have you seen a doctor this past week about what's going on?
If you hadn't slept in 7 days, you'd be feeling just terrible.

Please go talk to your doctor.

If I go without just one night sleep my anxiety levels would be through the roof, let alone anything else.

[anon1028]

I really can't answer any of those questions I'm sorry but please keep seeing doctors until you didn't answer even if you have to go to many different one

[Lara]

It was difficult for me to read your first post due to lack of spaces.

Look, I'm no doctor, I'm just reading your posts, but some things stick out...

Are you saying you are presently in Qatar?

Are you still taking the Epistane and does the doctor you are seeing there know you have been taking that?

If you had a similar experience when you tried a different steroid earlier, then wouldn't it be possible that it is the drug that is causing these serious problems?

Have you looked at the potential side-effects list for Epistane?

[chiefsfanj9]

I'm not currently taking epistle, I haven't in 1 1/2 year, which is when it started. Epistane is an anti-estrogenic as well. It happened the second time, about a year later, when I was on some different steroids and anti estrogens, this was last February. I hadn't done anything after that except natural supplements and I was sleeping good.

I ended getting on a natural anti estrogen called arimistane, which I bought from bodybuilding com. This was about a week prior to when this all started. I do remember during that week I would have these shaky feelings in my head when waking from a deep sleep. This wasn't happening before. A week later this started.

I think I may have gotten some light sleep last night, as I remember some dreaming periods, but it didn't feel like I even slept, although I still remember the dreams. It was almost like a light, half wake half sleep type dreaming. That 4 hour period did go by very fast though. I remember I tried to sleep at 8:30, and felt like I just laid there in a trance like state and got sweaty. I got up at around 10:30 to go to the bathroom, laid back down, then Rember dreaming some, and before I knew it, it was 4.

My time perception still doesn't feel right though. I just feel dreamy, absent minded, and like I'm not there. Everything keeps moving so fast. I currently in Qatar, but I'm in line to fly home as I'm typing this, due to this issue.

I'm on day 12 of what seems like and feels like no sleep. I have to be getting some though, right, or I wouldn't even be functional right now, even though I feel drained. This doesn't seem to fit the description of fatal insomnia, as it wouldn't just go away to the point a end up sleeping fine after both other times this has happened. Plus, it's progressive and doesn't just start with complete sleep loss that goes away completely from time to time for long periods with good sleep. I'm also 25 and it started with weird brain shaking episodes, nothing was ever abnormal before that. I must demand a pet scan. Thank you for the responses.