Convinced of SFI

[Pat1969]

I'm not sure they will help to be honest,they upped them to 30mg and no change. I had to take a melatonin to sleep last night. I've never had to resort to meds to help me sleep even during discontinuation syndrome.

[Pat1969]

Dr has given me zopione, it worked for 2 nights now I've just had another night of no sleep. Really worried I'm the unluckiest person in the world.

[Pat1969]

Just an update, I have now been referred to UCLH and the UK national prion clinic. I am really really scared now, I hope they tell me I have nothing wrong, but I'm still not sleeping properly, I got just 4 hours last night, and the night before.
I get nights where I don't sleep at all, the twitching Inthe mornings has stopped. I have been given temazapem today by the Dr, has anyone has these before?

I was given quitiapine and it kept me up all night, I was too scared to take the nortriptyline as thought it might do the same.

[Fishmanpa]

Really worried I'm the unluckiest person in the world.

And you would be, if indeed you had this unbelievably rare illness. I think you'd be in really, really bad shape by now being that this fear and thread started over two months ago.

Let us know what you find out!

Positive thoughts

[Pat1969]

I pray they say it's all in my head,

[AMomentofClarity]

Just an update, I have now been referred to UCLH and the UK national prion clinic.

How hard did you have to push to get this?!?! I’m shocked that you’re being referred to a specialist for a disease that has affected only a handful of people in world history when all of your “symptoms” match anxiety precisely.

As far as the symptoms you describe:

Poor sleep - Had it
leg jerks - Had it
I sweat a lot even if it's not hot -Had it
My pupils in sunlight are tiny, not normal constriction, smaller - Never checked/noticed
Strange sensations in my left leg - Had it

[Pat1969]

I emailed the Dr in uclh to try and get some advice. And with what I got back I went to my GP whom then spoke to the Dr in uclh.
I'm not talking about poor sleep, my sleep has been getting worse, now I don't sleep at all. I took zopiclone and it worked for 2 days only. I take mitazapine and I still don't sleep.
I've even tried alcohol but that's not working.
I really really hope I'm wrong, but I have all the symptoms plus more.
This insomnia came on suddenly, I've always slept well, but now I don't sleep. Obviously from what my GP told the specialist he thinks it's something to investigate.
I'm no Dr and had never heard of SFI I only came across it whilst googling for herbal sleep aids.
I go for long 8 mile walks, but it doesn't wear me out where as before it did.
I've had 2 MRI scans, paid for by myself, but the Dr at uclh says it doesn't usually show up on MRI scans, so how they diagnosis it I don't know.
All I know is I am very scared

[Pat1969]

Another night with no sleep
The temazapem has stopped working after a few nights.
I can hardly see. I even tried a glass of hot milk and nothing.
I have a load of symptoms and nothing is getting better, just worse. Of to gp this morning.
I am even more convinced I have SFI now. I don't want to think that,but all my symptoms match.
If I have I will be the unluckiest man in the world.
I pray every night now. I just want to be me again

[Pat1969]

Had my appointment, they wrote down all of my symptoms and did lots of tests, and took a blood sample to check for the gene.

I now find it extremely difficult to go to sleep and when I do, I wake up early.
Maximum sleep this week is 4 hours. I've had 2 nights I didn't sleep at all. The only thing that helps me sleep is alcohol and that doesn't always help.
Blood test takes 12 weeks

[CozJsy]

Hi I have the same problem was wondering if you’re ok now and if the test results came back ok?