I have literally lost the ability to sleep, and am completely loosing my memory

hey lily, that sucks about your condition, I feel a constant pressure in my head I don't know if you feel anything like this, and I'm just wondering how your memory is, because mine is really bad and I'm starting to feel it affect my day to day life, I know what you mean about those twitching feelings I get them to, not sure about the random jolting feelings though, I almost feel like I don't actually sleep, I'm between being awake and asleep and I really feel like this is what's caused the loss of memory 

David, it was Nik who was talking about the myoclonus (jolting), not me, though I expect you realised that after posting. I do wish they'd allow editing on this site, as I often post things then spot my "deliberate errors"!

Myoclonus while approaching sleep is a normal phenomenon that happens to most people several times a week. The usual medical explanation is that it's due to the sudden drop in blood pressure that precedes sleep. Most of us don't remember it, but obviously if you're lying there in a state of anxiety about sleeping you're going to notice it a lot more. It can also be made worse by anxiety.

sorry lilly, I actually only just realised haha, my brain just isn't functioning correctly, I think it;s becaise you have almost the same colour profile picture, ye before the sleeping problem started happening I did notice it now and again but now I notice it so much more, also I was just wonderng if anyone knows how I can get into a sleep trial ?

Oh yes, I hadn't noticed that!

I think a night in the sleep lab would be helpful in trying to sort out what is going on here, though obviously it won't provide a cure. I see you're in the UK, so why not go back to your GP and ask about this?

David, there's something in your original post that's still bothering me. If I'm reading it right, all this suddenly started after a "panic attack" about a month ago. I can't help wondering about the nature of this panic attack and what brought it on. Can you talk about this, either on the open forum or by private message? Either to me or to Alwaysalone (if you haven't already)? I can't help thinking it might contain the seed of what's going on with your sleep problems. 

Hey Lilly basically just over a year ago I smoked some weed with some friends which triggered a massive panic attack it was a pretty hectic night, infact one of the worst nights of my life, I went to bed that night thinking that everything would be back to normal and better in the morning, when I woke up something just didn't feel right and I was sure that the weed had changed my brain pattern or something, after days of worrying I found out their were many other people surrering from a similar condition which can be triggered through drugs amongst other reasons, people online were calling it derealization and depersonalisation after finding out what I was suffering from the recovery was slow but successfull and even though things never fully went back to normal, dealing with every day life was back on track. 

But ever since then things had never been quite the same I was recently in norway teaching children something called parkour, I don't know if you know what it is, and I believe I pulled a muscle pretty much the entire trip because of my extreme anxiety I was sure I was going to have a heart attack or something, and as soon as I got back to the UK I went straight to A and E to get checked over, they did a full check over and told me I was fine, I still thought something was of but trusted the doctors opinion and went home, about a week later I was sitting on the couch watching a movie when suddenly my hearing went funny and then my heart started beeting really quickly, like really quickly and I just couldn't get it to calm down so I went back to A and E once angain, they checked my over and once again told me I was fine, when I got home pretty much anyitme I tried to fall asleep my body would jolt me awake, and pretty much ever since that day over a mnth ago now I feel like I have barely slept or pretty much not slept, that feeling of knowing you have been asleep I haven't had since the attack over a month ago and I just don't know how I'm still alive, the ability to remember information is so hard now as Iv'e already said so many times I know Iv'e said it so many times but I really feel like there is something physically wrong as the ability to picture and recall thoughts is pretty much gone now. 

I'm really sorry for the essay lily and I hope this gives you a little insight into my condition, thanks so much for listening lily  

Hi David, Don't worry about the length of your post. People of my generation have a longer attention span than you young 'uns!

Yes - that's what I was expecting to hear. Have you discussed all this with a doctor? I suspect you may have smoked some form of skunk or similar. It's quite different from "ordinary" weed and has a very bad reputation.

I'm wondering how old you were when you first started smoking weed (of any type). The earlier you start, the more likely you are to get permanent brain changes. This is because the neural pathways in the brain aren't completely formed till our late teens. It doesn't affect everyone and it's difficult to predict who will be hit. Same goes for drinking alcohol when too young, but to a slightly lesser extent.

I'm wondering whether you suffered from anxiety or panic attacks before the weed episode. The TV episode sounds like a classic panic attack to me, borne out by the fact that they didn't find anything wrong with you in A&E.

hey lily, you might find this hard to believe but I have only ever smoked weed like twice in my life, the last time I smoked it was when the panic attack I was explaining happened, I was 21 when I smoked the weed last year, and no not really actually I didn't really suffer from anxiety or stress before the weed episode, I would worry about stuff now and then but I don't think anymore than the average person, just stuff like university work and girls liking me haha, I think the weed slightly changed the way I think about the weed, triggering underlining anxiety and stress I didn't know I had. 

I'm booked in for an apointment with my GP tomorrow, where I'm going to ask about a sleep clininc and see what they say 

Hi David. No, I don't find it at all hard to believe you've only smoked weed twice in your life, and I'm sure that's not all that unusual for someone your age, in spite of what people say. I was your age in 1966 and I've never smoked it in my life! I never believe everything I read in the papers or on-line.

I'm relieved to hear you weren't smoking the stuff in your early teens. That means you won't have permanently changed the way your brain works.

Unfortunately weed, like most other drugs, can have the effect in some people of opening a door in their mind that's hard to close again. That's particularly true of some of the more powerful, adulterated stuff that's on the market these days. It seems to me that the whole drugs market is getting progressively more dangerous. Though I never used anything myself (except alcohol!) I've kept a finger on the pulse of the drugs scene over the years. I worked as a staff nurse on an inner-city A&E dept in 1969-70, where we dealt with drug-related problems on a regular basis, and I now volunteer in a mental health centre, where a number of our middle-aged clients suffer from psychiatric disorders that appear to have been triggered by smoking skunk or similar. I honestly think that if you want to smoke weed these days it's safer to grow your own so you know what you're getting. OK, yes, I know that's illegal and I'm not suggesting anyone should actually do it! (Don't want to upset the site moder8or.)

I suspect that what may have happened here is that you had a latent tendency to anxiety that had never really come to the surface, and that last batch of weed you smoked was either stronger than you thought or contained an extra ingredient. This could have been enough to open the door to your anxiety, which is clearly what is stopping you from sleeping now.

I'm sure all this can be fixed, and you're going the right way about it. Be completely honest with your GP, both about any substance use and about what's going on in your life right now. Same goes for the sleep specialist, if you can manage to get yourself referred to one. You do know, don't you, that your GP is obliged to refer you to a specialist if you absolutely insist? Unfortunately, with current budgetary restrictions on the NHS, some trusts try to wriggle out of this. If you can't get a referral to a sleep clinic (which, admittedly, does cost the NHS a bomb) try and get a psychiatric referral. I'm not suggesting you're crazy, but a psychiatrist might have more insight into your problem than a GP with a prescription pad at the ready. Good luck, and let me know how you got on. (But only if you want to, of course.)

Btw, I'm very impressed to hear about you teaching parkour to kids in Norway. I'm also wondering why Norway, but that's just me being nosey. I sometimes watch the more extreme forms on TV, but only through my fingers! But I'm sure you didn't teach your students the more reckless stuff.

Hi David, I'm not sleeping much myself at the moment and just as I'm about to drop off, I have what u call a tiny blackout followed by a myoclonicjerk and it happens several times before I go to sleep and these happen because I'm kept awake because of the amount of pain I suffer from.

Hey man, so good to hear from you I hope you're doing well

Eh not to great to be honest I feel like my memory is still getting progressively worse I mean it's really bad now and my head feels so numb and stiff I just never ever feel tired at all I have another apointment booked with my GP on monday where I'm going to explain how I'm feeling and maybe try to get her to refer me to a neurolagist. The feeling in the head is the most scariest feeling Iv'e been having which has been going on for over 5 weeks now. I don't know if you've hear of fatal, familial insomnia and sporadic fatal insomnia where a patient completely loses the ability to sleep which results in death, I really feel like I may have this seen as I am never tired and one of the first symptoms is memory loss which gets progressively worse and that's exactly what's happening to me. The funny thing is I will mention this to my GP on momday and I know she will just thing I'm crazy for even thinking this, but I really think I have this disease or something very similar to it, but I will see what she sais, I mean my memory is so bad now, when I try to picture what Iv'e done even an hour ago I just can't it's so bad, anyway sorry for the usual rant. 

I miss talking to you man, thanks for listening as always, really hope you're doing well man and in good health

Hi David, Sorry to hear you're still not sleeping. It's only natural to have problems with memory and concentration in your state. However, may I offer you a piece of advice - speaking as a former nurse.

Don't mention fatal insomnia of any kind when talking to your doctor.

This is an incredibly rare condition, and the chances of you having it are just about zero. Insomnia due to other causes is, however, only too common and needs to be taken seriously by your doctor. Memory loss and poor concentration are inevitable results of insomnia, but are reversible once you start sleeping again. You are not going to die.

My concern is that as soon as you go in there spouting about having the fatal kind, she will immediately switch off, put you down as a hypochondriac and general wind-up artist who's been doing too much surfing on medical sites, and dismiss the whole thing out of hand.

Please, please don't go in with any ready-made diagnoses. This is the best way to ensure you don't get taken seriously. Just tell her everything you've told us in these forums. If you want to push for a specialist opinion, which is what I'd do in your place, please insist again on going to a sleep clinic, even if you have to go to a different area of the country. Failing that, ask for a psychiatric referral. Not because you're crazy, but because your anxiety is building as a natural result of sleep deprival.

I hope you get some results this time.

David, something else I've been meaning to say. There's a young man called Lee posting on these boards with a similar sleep problem - though his was triggered by an antisocial work schedule.

He had a very good piece of advice for others with a sleep problem. If your doctor prescribes medication to help you sleep and it's not working after a reasonable trial, don't continue taking it in the hope it might suddenly start working. Stop taking it and take the unused tablets back to your doctor.

Lee's reason for this was a sound one. Some patients abuse sleeping meds, even using them recreationally. A doctor faced with a patient regularly coming back asking for different meds may suspect that they've taken (or even sold) the original meds and just want to try something new.

It doesn't sound as if your doctor has prescribed very much so far, but I think it would be worth bearing Lee's advice in mind. If sleeping tablets aren't working, take the unused ones back to the doctor to prove you're not playing games.

Hey Lilly as always thanks so much for the advice, I know I probably shoudn't mention fatal insomnia but my physical and mental symptoms really do point towards something like fatal insomnia it's really sad though because I know exactly what you mean because even if I did have fatal insomnia my GP would never believe me probably no one would believe me for that matter, and if I did happen to have it no one bothered to look for the warning signs, I know the chances of me having something so rare is so unlikely but people get it so why couldn't I be one of those people all my symptoms do point to it, loss of memory, head pressure, weakened imune system such as scars not healing, the inability to feel tired which is one of the main symptoms, it feels like I'm dying and the GP's just won't listen. 

Also thanks for the adivice on the medication, if I feel like it's not working I will stop taking the medication and take it back to the GP, thanks a lot for the advice. 

I just want to say, thanks so much for all the adivice you have given me over the past weeks lily, you are a truly caring and decent person, and you take so much time to help people in need

Oh David, I know no one can convince you, but all your symptoms also point to ordinary old-fashioned sleep deprival too. Insomnia is a terrible thing, it scrambles your brain, interferes with short-term memory and generally makes you feel as if you're going to die. I used to go for quite long periods with very little sleep at your age, and I sometimes felt the same as you do, though I knew too much to scare myself with thoughts of SFI. But all these effects are fully reversible once you start sleeping again - and you will, even though you'll probably continue to have some degree of sleep problems for the foreseeable future.

If you really had the fatal variety there would already be signs of it in your cognitive ability, as evidenced by your capacity to express yourself in these posts. But there is no sign whatever of failing cognitive ability. Apart from which, the incidence of SFI is something in the order of one in a billion.

You're suffering from health anxiety. I get a lot of PMs from young people who imagine they have all kinds of fatal conditions, who've seen my posts on various forums, and think I can help them. But I know I can't. Health anxiety sufferers cannot be reassured, by definition. Only psychiatric treatment can help, and only then with a lot of hard work on the part of the patient.

I still think there's more hope for you than for most health anxiety sufferers because you can pinpoint the start of it all - the panic attack that followed the bad trip. This is a story I've heard many times before.

Try not to give in to despair. You have everything going for you. It's the anxiety that's feeding back into itself and stopping you from sleeping. Tell your doctor the whole story and insist on referral to a sleep clinic or a psychiatrist. Don't be afraid of breaking down and crying. That will help to get across how desperate you feel. She's unlikely to agree to refer you for a brain scan, and if she deems this request unreasonable she won't refer you anywhere else. If you can get yourself to a specialist, whether a sleep clinic or a psychiatrist, they'll be better qualified to judge whether there's really a neurological problem, in which case they will refer you.

All the best. I'll be thinking of you on Monday.

David I think that you need your thyroid function checking together with antibodies. Another reason for your signs and symptoms could be anaemia.

Hey lily, the GP wasn't great, they pretty much just told me I have health anxiety but I have had health anxiety in the past and this just doesn't seem the same at all, also I just wanted to say about sporadic fatal insomnia you said that it seems like I have no signs of SFI in the way I'm talking im my messages, but it's only been seven weeks now, I'm pretty sure FFI takes months for complete cognitive decline which leads to death, the fact of the tightness in my head, loss of memory and the inability to feel tired all point to this disease, I also asked about a CT scan and he said it's highly unlikely I would be able to get one, and I know you told me not to but I did mention sporadic fatal insomnia, and he just said I don't have that, like he can just know, I also stary councling this saturday, although I don't think it will be much help as I'm prety sure this is physical not psycological but I'll see

David, here's a copy of the PM I sent you two days ago, which you didn't open. I sent it by PM because I didn't want to provoke yet another flurry of anxiety in the SFI community but, hey, they're already anxious so here goes:

"Hi David,

"Me again. You've probably seen we have yet another fatal insomnia sufferer on these boards. That makes seven to the best of my knowledge, though there are probably others on threads I'm not following. Aside from anything else, that should give food for thought. Seven of you, all English-speakers, on the same forum in a period of only about six months? You'd need to quiz thousands of doctors and nurses to find even one who'd seen a genuine case in their entire career.

"OK, I know that isn't going to reassure you. You're the one person who really does have fatal insomnia. So is each one of them, but that's neither here nor there. As I said in my reply to Gman yesterday, I'm not being flippant. I do understand what it's like to have sleepless nights but I'm an old lady so I'm able to take the long view, and I sometimes get a bit exasperated.

"I just re-read one of your recent posts and found the following: "...even if I did have fatal insomnia my GP would never believe me probably no one would believe me for that matter, and if I did happen to have it no one bothered to look for the warning signs..." This set off a chain of thought that I didn't want to share publicly, as I suspect all the other fatal insomnia sufferers are reading these posts and I didn't want to sow complete panic. What I'm going to say isn't with any intent to scare you. I don't for a moment believe you (or any of the others) have fatal insomnia, but I'm very keen for you to get maximum benefit from your upcoming GP appointment.

"Consider this...

"Fatal insomnia, whether the familial or sporadic type, is just that. Fatal. It does what it says on the tin. There's no cure and no treatment, except for palliative treatment to relieve convulsions etc. right at the end. It kills in a very short time - usually months, maximum a year or so, and there's absolutely nothing that can be done to slow it down, let alone stop it.

"What then is the benefit of trying to convince your GP to accept that you have fatal insomnia? There's not a thing she can do about it if you do have it. Much better to have her look at the wider picture - your general state of health (including blood work to exclude an over-active thyroid etc., as another poster said) and your over-riding anxiety, which I suspect is the real cause of the problem.

"None of the above should be viewed as my being judgemental. You're about the age to be my grandson, you're an intelligent, caring young man and my heart goes out to you. I just want you to get the best possible care for whatever it is you're really suffering from."

Hey lily 

Sorry I didn't see you're private message I completely understand what you're saying and ye if I did have fatal insomnia ofcourse there would be nothing I could do about it, but if they did a CT and saw that something was wrong it would give me so much piece of mind, it's the wondering I can't take feeling like something is wrong with me and not being able to know, at least if there was something wrong with me then I'd know and could deal with it, and quite frankely I don't really care whether my GP thinks I have fatal insomnia or not, all I want them to do is refer me to a neuroligist who is a specialist in the brain, instaed of having to talk to my GP who quite franckly only knows a little information on every illness, I'm sorry if I'm coming across angry but I'm the patient and no matter how much doctors know, I'm in my body and no one knows more than my self how I'm feeling I reckon if my GP was me right now his opinion would probably be quite different. 

Also when you mentioned the other people on the forum posting about having fatal insomnia without any offence to them, I completely agrree with you, I definetley don'y feel like any of them have fatal insomnia because there all saying how their actually getting sleep and none of them have mentioned anything about memory problems and the inability to feel tired which they definetely would mention if they had memory problems because it's the most scariest symptom by far, but all there symptoms do seem quite a bit different to mine, anyway I'm just rambeling now and as I was saying I'm not them and I don'y truly know how they're feeling. 

David

Have you asked for a second opinion/ You are entitled o one. Has your blood been checked for anaenmia , vit D deficiency, urea and electrolytes? Can u change surgeries and find a dr willing to refer you to a neurologist. Are u in ngland?

Hey Lily 

Iv'e had blood tests done which checked for a lot of different things such as iron deficiency, imune system etc, and they all came back fine, eh the thing about my GP at the moment is that I don't actually have a specific GP I usually get seen bt the same GP but ocasionally seen by various GP's which is quite annoying, Iv'e seen 2 different GP's and I have asked then both about a CT scan and to be referred to a neurolagist and they both pretty much said no , and yes I do live in England 

Don't worry about not seeing the PM David. That's the least of my concerns about you.

I agree with delirious that you should insist on referral, though I'd suggest a sleep clinic rather than a neurologist, at least to start with. A sleep specialist would be much better to qualified than a GP to pick up on any neurological symptoms, and you'd get immediate referral to a neurologist if necessary. I take your point made in an earlier post, that the sleep clinics in your area only treat sleep apnoea, but the NHS does allow for the possibility of referral to other regions.

However, I'm very glad to hear you're starting counselling in a few days. Please try to stay open-minded. I know it's difficult to see past this, as your obsession has taken over your whole brain and made it impossible for you to sleep. This isn't your fault, it's part of your illness, which was triggered by that one bad batch of weed. This is a depressingly common story.

The one thing that makes me hopeful for you is that you've fixated on a disease that produces very severe neurological symptoms (far worse than anything you're complaining of) in just a few months and is invariably fatal within a year. This does at least mean that your current anxiety will be limited in time. Most of the health anxiety sufferers I encounter on a regular basis have fixated on brain tumours or heart disease, which entails a lifetime of anxiety if their fears go untreated.

Get well soon, David.

I agree with you Lily but have to say that drs are too ready to pin labels on people. I think that this is a moajor contributing factor to a person who is already anxious and lets face it most of us are anxious about our health. Self preservation and all that. At least that is what I have found during my nursing career.

Also what gets me is the ease with whih drs will 'reassure' with doing any tests. I feel it is reasonable to say that it is only after physical causes are ruled out can anyone say that the persobn is suffering from health anxiety. Having said that I do not know anything about fatal insomnia . I have insomnia and have pt it down to anxiety caused thru bereavements, a thyroid issue, anaemia, peripheral neuropathy and anxiety triggered by doctors. That is the truth.

I enjoy reading touytr postings and can see that you are a decent, kind nice person. I deeply respect you as clearly  David et al do as well.

I paid for a cbt counsellor to come to see me at home as NHS waiting list ridiculously long. He talked to me using the PCA and provided his own relaxation tapes which were useful to start with. When you are paying fifty quid a time you soon start looking for other remedies!

Kind regards

xxx

Thanks lily, ye I think I will insist on a referreal, Iv'e already suggested a sleep clinic and they said it's not really a thing they do, I think I may need to just scourer the internet for a sleep specialist in my area, and what do you mean when you say I'm fixated on a disease which produces far worse symptoms to what Iv'e been experiencing, also I'm pretty sure people with fatal insomina would be able to still operate similar to I am after being only 7 weeks into the disease anyway, I'm going to try my hardest to get into a sleep clininc and try to get referred to a neurolagist over the next week or so 

Yes, I think it would be a very good idea to google sleep clinics in your area. Neighbouring areas too. It would be worth a bit of inconvenience to get a proper assessment of what's going on with your sleep. I haven't worked in the NHS (or lived in the UK) for >40 years, but I'm sure there must be clinics that deal with insomnia and other sleep problems, and not just sleep apnoea. Frankly I suspect your GP is palming you off. Then again, I also suspect that's partly your own fault for insisting on being tested for SFI, but OK, I promise not to nag you over that again!

I'm not sure whether you'd be able to get individual clinics to tell you what kinds of sleep problems they deal with but it would certainly be worth the effort. Of course, there's also the option of going privately, but I suspect that would be prohibitively expensive.

Sorry, my grammar was over-complicated in that sentence you're asking about, wasn't it? What I meant was that you won't have to suffer this anxiety very long. SFI (as well as the familial kind) progresses so fast that if you do have it you can expect to develop very severe neurological symptoms - not just brain fog etc. - in a few months from now. I'm sure you already know this from all the research you've done. Therefore if your symptoms are not significantly worse in six months' time you'll know you don't have it.

Good luck with your sleep clinic research. But don't turn your back on the idea of counselling. Sometimes a twin approach works better than either alone.

David, I'm putting this in a separate post so it doesn't get lost in all my usual verbiage!

Bear in mind that there's no way any of the fatal insomnias would show up on an MRI at the 7-week mark. And a CT scan is a lot less sensitive than an MRI of course.

As I'm sure you know, these are prion diseases. They do their damage by systematically destroying the brain's grey matter. The degree of destruction that would show up on an MRI would already have caused significant neurological damage - far more than you're reporting. Even then, a neurologist would normally want to see two MRIs, probably six months apart, to establish whether there was any real brain shrinkage, as we all have natural variations in the size and shape of our brains anyway.

Sadly, the only way any prion disease (including Alzheimer's) can be definitely diagnosed is by taking a sample of brain cells at autopsy.

Ouch delirious - £50 a throw! I'd think twice about that too! Have you tried intermittently dosing with OTC antihistamines - the first-generation kind, of course? That worked for me during my 40 years of sleeping problems.

Quite agree about the labelling thing, as I've been a victim of it myself. Sometimes doctors need to be guided a bit, but I find it's usually counter-productive to go in with a ready-made diagnosis. It offends their professional pride or something. >20 years ago I suddenly started getting attacks of dry mouth, dry eyes, joint and tendon pain, peripheral neuropathy and Raynaud's syndrome. It took me a couple of years to work out what it was myself. I don't have a reputation for health anxiety, so every time I saw my then GP with this ragbag of symptoms she just stuck an "old age" label on me. I was 50 at the outset. I knew that going in and asking to be investigated for Sjogren's syndrome (which it indeed turned out to be) would result in total dismissal, and I'd never get the blood tests. I got lucky in that one day, quite by chance, I had a mega attack of Raynaud's during a consultation - practically my whole hand went white. I showed it to her. She said old age but when I looked at the blood form I saw she'd ordered all kinds of anti-inflammatory and antibody tests for the first time. I requested my own copy of the results and saw they'd all come back positive. She didn't call me in. When I went to see her a few months later I waited till the end of the consultation, then casually mentioned that I'd seen the results and asked, all innocent, what they meant. She muttered almost under her breath that I had Sjogren's but it was nothing to worry about, and ended the consultation! Not a catastrophe, as I manage the condition myself - no way would I take the immunosuppressants they sometimes prescribe for it - but I agree it goes to show how the labelling process works.

However, even if David's GP does think this is health anxiety, I quite agree she can't just leave it at that. She does finally seem to have referred him for counselling at least, but the poor lad is really suffering because he isn't sleeping, whatever the cause, and she really should address the immediate problem, by getting him an urgent referral to a sleep clinic, and maybe prescribing a short course of sleep meds to give him some respite. He really shouldn't have to be scouring the country himself to find a suitable specialist.

Sorry to hear about your sleep problems. I was always a poor sleeper, right from childhood, but my sleep architecture was comprehensively screwed up when I inadvertently got involved in a pilot project to "improve" nurses' hours, when I was 25. We worked a killer schedule that regularly involved only getting a few hours off between full shifts. I only did this for 14 months, but I never got back to normal again. I only started sleeping properly once I retired at age 66, but I know that won't be much help for the majority on here.

Hope you soon find some way of getting through your problems.

Hi Lily

I totally understand aout the dr thing.

When I started to read your reply I immediately thought of Sjogrens syndrome as I have been through that myself.

The drs of today are laboratory 'findings led' rather than symptom led that is a major problem that gets in the way o mking a speedy correct diagnosis and assisting the patient.

I have found this to be so troublesome as to consuider moving abrod. Howebevr I feel too old now to do so.

For a time I wiled my time away by looking at French chareaux online I mean! Had to have something to hope for, another way of life etc.

So what has this got to do with insomnia I ama sure anyoner eading this is asking.

I only know that in my case I felt unable to cope with the insomnia, being afraid of going to seleep and then unable to get up s felt exhausted.

I started chatting to people online until 5 am . When I suddenly felt safe I would go to bed.

This caused me to sleep in until early afternoon.

I decided to try going to bed at around 11pm and see what woul happen. I vowed to put things behind me and to try to be 'normal' again. This seems to be working with the excpetion of last night when I wen to bed at 3am.

Anyway in all this rant someone somewhere may be able to fain some solace from it. You never know. At the moment I am up against a new g at a new surgery who is unprofessional. 

This has triggered further anxiety.

Delirious, I don't think moving abroad is the answer. The whole Sjogren's episode took place in Belgium and I doubt whether things are any better across the border in France. Our health system works vastly better than the NHS, even though it costs the patient slightly more, but doctors are doctors the world over! Still, I have a different GP now, and I must say he's the best I've ever had.

I can't help wondering why it is you say you're scared to go to sleep. You also talk about "feeling safe" at 5am the other night. I'm wondering whether you have another sleep disorder and not just insomnia. I actually have several!? Although I sleep quite well these days, I must admit my sleep schedule is all over the place. Some days I'm almost nocturnal, though I realise that's part of getting old. As I live in an apartment I just make sure I keep very quiet in the night, to avoid waking the whole house. I don't want to turn into one of those crazy old dames who keeps the neighbours awake all night moving furniture etc.!

Hi delirious, Just answered the question raised in my post two hours ago. I've just stumbled across our correspondence from a couple of months back in my PM file. I do hope the sleep disorder you described there is improving.

ometimes it is but slowly. I went thru similar fears as David but had never heard of fatal insomnia, neither do I wish to. xx

I wouldn't worry about that, delirious! I used to go through night after night of insomnia when I was young but I'm still here in my 70s, large as life and twice as ugly, so it clearly wasn't the fatal kind! Glad to hear your ongoing problem is improving a bit.

Don't let your imagination run wild with you. I know it's hard not to when you read the crap on the web and when you compared it with what's going on inside you it all seems to make sense but you gotta remember you're not thinking clearly right now let the doctors do the diagnosing get to a Sleep Clinic. in the end I ended up with 300 milligrams of Seroquel every night to put me to sleep for roughly 5 hours. And though my condition is rather rare in and of itself it is nowhere near ffi.

And please take this bit of advice never suggest an illness to a doctor they just look at you like you're a crackpot let them do the diagnosing just give them your symptom ology and force them to send you to a Sleep Clinic. There are literally hundreds of conditions out there that mimic FFiand are nowhere near associated with it trust me you don't have FFi.

I was on 800mg seroquel and it lost effectiveness. if that's what they put you on and it isn't working for me, what hope is there?