Hi RLR.  Hope this find you well!  Merry Christmas to you and your family!  I am enjoying the season too with my family but wanted to post an update:

I am still having the severe insomnia and its been 1 year now.  I can not fall asleep on my own.  I have tried not using any medicine to fall asleep and still I do not feel tired or fall asleep.  

So I still take 30 mg of Temazepam and 1 mg of Alprazalam and that does help me sleep lightly for 5 hours.

But 1 year like this?  Still have diminished pain, muscle twitching, buzzing in my ears, and other odd symptoms. I feel confused a lot and my short term memory is not up to par.

Sorry to go back on here.  I have visited other forums related to sleep and the Physician's on there do not know what to think.  This has me scared.

I still continue on with my life and try to think positive.  I really just do not know what to think.  I am also still on the Lyrica 300 mg a day for the "supposed" temporal lobe seizures.

Have you ever seen a patient like me?  I do not respond to other sleep meds or any meds at all, except for the Temazepam and Alprazalam.  

Again, this insomnia was sudden and started exactly one year ago.  

Thank you for listening.

Happy New year and Merry Christmas to you and yours!

Stephanie

Alright. Now I'm going to explain this to you and frankly, I'm starting to feel insulted. My word appears no more substantial to you than a passing thought. You somehow believe that what you yourself have interpreted, together with your neurologist, speaks more to the accuracy of your claims. I was a neurologist for more than 4 decades, board certifed for most of those years and stood as chairman of several departments for as many years. I'm going to take this opporutnity to explain why it's impossible for you to be suffering from fatal familial insomnia. Beyond that, I am entirely disinterested in your own differential diagnosis and do not intend to revive the ongoing premise for why you believe you're correct.

It should interest you to know that I'm all too familiar with FFI and had occasion to see the disease and its features. There are four distinct phases of the disease, the first being increasing insomnia accompanied by panic threshold events and growing paranoia. This stage is followed by frank hallucinations and continual panic threshold events. The total timeframe during which these events takes place is 9 months. Beyond these stages, the total absence of ability to sleep in any context whatsoever produces rapid decline and loss of weight, followed by severe dementia that results in death of the patient with 3 to 5 months.

These stages of the disease are consistent in ALL patients in this order without exception. Other features include severe and constant miosis(constricted pupils) constant diaphoresis (sweating) premature menoupause and hypertension. These features exist in all patients with the disease with no exception.

Now I've not heard one mention by you of the characteristic pattern that must exist in all patients for such a disease to exist. Do you understand me? Not your personal interpretation or that of your "neurologist" but in all instances of fatal familial insomnia. It is a prion disease, a mutation of a certain protein, which causes the onset.

You don't have this disease and I'm not going to discuss that aspect further on any subsequent occasion. If you still choose to believe that you are afflicted, then do so by your accord, but I will not be subject to your challenge or denial any further.

Additionally, absent the influence of the prion factor, mechanical trauma to the thalamus most often results in coma, not insomnia.

Your condition is functional in orgin in my opinion. You are sleeping, whether amidst the influence of patterned insomnia or not and "light" sleeping is sleep in the clinical context. You can't simply create your own clinical criterion in order to make it justify your concerns.

It is my opinion that your sleep architecture fits within the variable course of insomnia, likely influenced by clinical depression. I also mentioned a formal sleep study by an actual sleep center, with disclosure of the subsequent report. To date, I do not believe you have done so.

The reason that you believe something unique is wrong and that no one will listen, is because you believe you're correct. Neurology was my profession for longer than you've been alive and I'm here to tell you for the last time that you do not suffer from FFI.

Further discussion of this issue is closed to further posting and if I encounter it, I'll remove it. It is entirely out of context on this forum and you need to return to your psychiatrist for issues relevant to your insomnia patterns, which is all that plagues you. You're going to live a normal life, albeit one plagued by the apparent obstinance to the truth.

Matter closed.

Best regards and Good Health

Hi RLR,

I am writing as I obtained a copy of my Sleep Study and wanted to share it with you....  

I am seeing a Psychologist re: Sleep Issues.  she is a Neuropsychologist who helps people re: Insomnia.  She does not know anything about FFI, or "Sporadic Fatal Insomnia".

This sleep study was done on 2/23/2010, so almost 1 year ago.  The Study was done 2 months into the Insomnia.  Currently, it has been 13 months with the severe insomnia.  I literally cannot fall asleep on my own and do not feel tired, along with a host of other symptoms.  I still continue to take 30 mg of Temazapam and 1 mg of Alprazalam in order to sleep and its a "light sleep" consisting of about 5 hours per night.  
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here is the sleep study dated 2/23/2010:  I had to take 30 mg of Temazapam in order to fall asleep as I culd not fall asleep on my own.

"The study began with the lights off at 23:30 hrs.  Latency to sleep onset was 53.5 minutes.  The patient was studied for 374 minutes.  Total sleep was 269 minutes.  Sleep efficiency was thus 71.9%.

Analysis of sleep architecture demonstrated that Stage N1 constituted .8% of the total sleep time.  Stage N2 sleep was 80.1% of TST.  Stage N3 sleep constituted 0% of TST and REM sleep (Stage R) 11.9% of TST.  Latency to the first onset of REM sleep was 91.5 minutes.

High sleep spindle density noted throughout study.  No seizure activity noted.

Sleep continuity was disturbed by 33 arousals and 9 awakenings.  (Arousal Index is 7.4)  The patient was awake for 41 minutes after first onset of sleep.  

0 periodic limb movements were recorded.  The arousal index secondary to periodic limb movements was 0.

Cardiac rhythm is sinus.  The mean heart rate during sleep is 87 beats per minute.

A total of 1 apneas and 9 hypoapneas were scored.  The apnea hypoapnea is 2.2.  

Average awake O2 saturation was 97%.  The lowest O2 saturation during sleep was 89%.

The study was concluded at 05:43 AM.

Impression:

1.  No seizure activity noted.

2.  Primary snoring:  The AHI on this study was less than 5 events per hour arguing against a diagnosis of obstructive sleep apnea.  The patient did have evidence of mild snoring.

3. HIGH sleep spindle density is noted  Patient is noted to be on Temazapam and took 30 mg of Temazapam during sleep study.
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I know full well your concerns about me posting anything about this on the site.  I know full well this is not what this site is intended for.  You requested a copy of my sleep study and even though it is nearly a year old, I obtained a copy for you.

I am not trying to challenge you in any way.  I know my posts have seemed like I have tried to challenge your opinion, but I am scared.  

At this point, I do not feel tired as I mentioned above.  This started suddenly 12/9/2009.  Along with burning all over, diminished pain, loss of hunger/thirst sensation.  My Psychiatrist, Neurologist and other Physicians tried various medications to induce sleep.  The only thing that works is in the Benzoziazipine class.  

And yes..  my main concern is Sporadic Fatal Insomnia or FFI.  

So after this report and what I continue to still go through (without you examining me in person), what are your current thoughts?  I will not be posting anymore on this forum regarding this issue after today.  But I would like to know your opinion after reading the sleep study from almost a year ago.  

I do not feel depressed, live a normal life, albeit one plagued by the insomnia.  My psychiatrist tried a bunch of different meds for depression, anxiety, etc trying to weed out othe disorders and to no avail.  Nothing seems to work or change the insomnia except for the current meds I am taking.

I have never meant to challenge you and I have. I am sorry for that.  I refuse to believe the Dr's re: this because if seems so complicated.  I do not know what to do re: this and I am trying everything I can (seeing a Psychiatrist, Psychologist and Neurologist.  They all seem perplexed, so I am hoping you can shed some light for me.

Honestly, I am scared.  I don't know what the future holds.

Thanks for listening.  I will not post again re: this, but I wanted to give you a copy of the report and get a final opinion.  

Thank you for everything RLR, even if frustrating at times.  I do value your opinion and after more than 40 years in practice, I know you know what your talking about.