Chronic sudden insomnia for 1 year now and ongoing.

[steph847]

Hi,

I have had weird health problems over the years but to make a long story short, almost one year ago to this day I have developed sudden chronic insomnia.  My Neurologist has tried Ambien, Melatonin, and a host of other meds for the insomnia.  Nothing worked.  I do not feel physically tired.  I have symptoms which include, burning all over at times, a tingly feeling throughout my whole body at times, not feeling certain sensations like pain, cold or hot...  I was thought to have MS 5 years ago as I have lesions in my brain but yearly MRI's prove that nothing has changed.  Went to Mayo 5 years ago and was told I did not have insomnia.

So one year ago, I develop an attack.  My first symptom was burning all over, then the horrible insomnia.  It was like I went from sleeping like a baby to not being able to fall asleep at all.

So my Dr put me on Temazapam, which does help me sleep, but its a light sleep.  I take 30 mg of that PLUS 1 mg of Alprazalam (generic xanax).

I had a sleep study done about 10 months ago (2 months after onset of insomnia) and it showed lots of sleep spindles and a lack of deep sleep; only reached stage 1 and 2 of sleep.

My fear is Fatal Insomnia.  :(   I fear this because I literally cannot sleep at all on my own.  I have tried CBT, seeing a psychiatrist and even she is puzzled as she had me on Seroquel, and a bunch of other meds to help me sleep and nothing took effect, even at high doses.  The only thing that works is in the "benzo" class.

So do you think I could have fatal insomnia?  I do not have a family history of this rare disease, but the sudden insomnia is puzzling and like I said, its been one year now....

I am 33, female and have 3 children whom I love dearly.  I am scared of this disease.

Thank you for you time.

Steph

[Danjob]

Wow this post really caught my attention. It all started with weird burning sensations as well, and some pretty intense muscle spasms and then I could not sleep, I have lost my sense of smell and everything around me seems completely unreal like I dont recognize anything even my own family seem like strangers. I have had EEGs, cat scans and the likes which turned up nothing. and this came out of nowhere about two months ago, I havent slept at all since maybe 2-3 hours in the beginning but now I cant tell if im sleeping at all. when im "dreaming" I can still move its terrible. Doc prescribed seryquil for sleep and effexor for the anxiety but nothing is helping... it really feels like the worst thing in the world, I used to sleep 8 hours a night no problem, now I forget what that feels like all together. My heart goes out to everyone suffering from this. From what I understand FFI is about the rarest condition you could get so the odds of anyone having that on this forum are almost impossible.

[darcy190]

I have just read these posts about FFI. I have had a lot of problems with sleep over the years. Of late it has been getting much worse, now I am not able to sleep at all. I have tried all medicines and nothing works, the latest being Melatonin, Ambien and Zopiclone. I am feeling exhausted all the time, have poor appetite, nothing has any taste, constipation and aches and pains burning and tingling sensations all over my body. I am not able to work now or function normally day to day. It is impossible for me to relax in bed at night or any time instead I am very restless. I often feel that I am about to go to sleep for a few seconds and then I am am awake again just after that. I either feel hot or cold or both together and feel restless or agitated all of the time. I have told my doctor about all of this and there is no response apart from it being linked to anxieties, all in my mind and that there is nothing wrong with me.  I am now getting really worried because I live on my own and how could I manage when things worsen with this horrible disease.  I am sure that I have it although it might be Sporadic Familiar Insomnia. I say this because I have no link with my biological parents as I was adopted at six months.  I have no way of finding much out now as I am  57 and feeling so ill with these symptoms and have such little energy left to do anything. I would like to have some support from anyone who had put a post here.  Having no support from my physician or remaining family is really hard for me and I am now really stuck to know what to do. Any comments would be appreciated.

[xmissgisellex]

Can you please contact me via email at
***@****

I have had the same symptoms as you for the past 8 months and also feel like I have FFI because I have been tried on 11 meds now and NOTHING has worked. I see that you haven't posted in a while and would like to know how you are doing/recommend anything to me.
Thanks

Giselle

[xpiratesforeverx]

I'm so sorry to here what you are or were going through. I really hope you found answers...I've been having so many of the same symptoms, like the burning sensations. That's how this whole thing began with me about three months ago. I've developed so many odd neuro symptoms. For example my a senses of smell and taste are less keen at times, I get tingling and burning, strange involuntary moments, and this feeling of detachment from the world around me. The insomnia happen to me two months ago. I literally cannot fall asleep whether it is a nap or bedtime. I am afraid of the same things you are like FFI. I'm so scared that my brain is degenerating rapidly or something. I hope you are doing well now though.

[rceler]

I have experience similar insomnia also for a month I am only 26 ... I've tried xanax triazolam ambein otc meds herbal teas I've visited multiple docs .. neuro physic doc also no luck ... My ears ring I lost my appiate and weight but i forced myself to eat so i maintained my weight now ... This all started for me after a stressful time in my life and ever sense I haven't been able to sleep normal either ... I do dream but i wake everytime after these dreams I think I sleep like 2-3 hrs then dream then wake toss and turn then go back to sleep and dream again for less the 2 hrs .. I remember all my dreams.. I start to think i am not really sleeping I jus lay in close my eyes have dreams but wake up quick ... It's Werid I'm afriad I have FFI also ... It's horrible I feel weak less energy and i so young to go through this .. my physic doc prescribed serquel and limictal but i haven't tried them yet .. I jus worry because i don't wanna take physic meds i jus wanna be normal again ... Really I jus have a sleeping issue .   I only take buspar for anxiety right now I'm trying that out but Idk Wat eles to do .. I feel the same u do hopeless

[Nanasluv4u]

Would you mind sharing  the source os your aluminum poisoning? I have been told by several people, health care professionals as well, the aluminum in most deorarants can cause problems.
Thanks
N