Worried about vCJD or fatal familial insomnia

[chronichypo 3]

For the last couple of months I've had gradually worsening insomnia, at first it was being caused by my upstairs neighbour who has wooden floorboards in her bedroom so whenever she walked around which she would do regularly from 5am she would wake me up. Now that's stopped but I am having worse and worse problems sleeping, both in getting to sleep but also in staying asleep. It's got so bad now that I barely sleep throughout the night and I find it harder and harder to function at work. I have done all the things people advise you to do re sleep hygiene, I don't drink much alcohol, one cup of tea in the morning and the sleep aids which used to work like nytol etc no longer work at all.

 

I'm starting to feel terrified because I know insomnia can be one of the early symptoms of vCJD and can also be a sign of fatal familial insomnia. Does anyone have any experience of really bad insomnia and if so how long did yours last and what helped? 

[jonathan123 2368]

Hi chronichypo. Have you been Googling? Fatal familial Insomnia!! CJD? .  Where on earth did you read all that? Insomnia is a classic symptom of anxiety.  . If someone has a personal problem which can't be resolved they well lay awake wondering about it, but in anxiety our minds fasten on to the fact that we can't sleep and we begin to worry that we will never sleep again. Nature has taken care of that. Sleep will come again and you can't prevent it, but the more you worry about it the longer it takes. It is not insomnia that keeps you awake it is the worry about it that does that, You fear fear, afraid of your own feelings. The old fear/anxiety/fear syndrome. Why not Google? Because in anxiety we are so vulnerable to suggestion. If some charlatan comes along and tells us the moon is made of cheese we may well believe them. That is an exaggeration but you see what I mean? If it begins to worry you too much see your doctor. There are many relaxants on the market that can help in the short term and are useful in establishing a pattern of sleep. You will be fine if you can stop worrying because you worry because you can't sleep. (Sorry, a bit ungrammatical, but you see what I mean?).      Jon.

[chronichypo 3]

Thanks Jon, I have already been using relaxants and the reason I've been worrying is that they have stopped working and my insomnia seems to be getting gradually worse. And regarding laying awake wondering about problems, I haven't been doing that, but I simply don't drop off to sleep. I have seen my docs and waiting for a referral for CBT but struggling in the meantime.

 

And yes I did make the mistake of Googling, I was worried for a very long time about vCJD due to the scare in the 90s and I thought the danger had passed but then this morning I read that far from having passed it may just be delayed as there could be a second epidemic with 1000s or possibly up to millions of people in the UK being affected due to the long incubation period of anything from 20-50 years. How do I deal with that kind of worry??? Doesn't that worry you?? Insomnia is one of the early symptoms, as it is for fatal familial insomnia.

[jonathan123 2368]

If you look up a sore throat on Google (Don't of course) you will find anything from Tsetse Fly disease to Arctic Swamp fever. (!). With no medical training we can't discern the difference, and it is dangerous to do so. I am a lot older than you and I can say that without knowing your age, but does Dementia worry me? NO . Put it this way. What are my chances of winning the Lottery? Runs into millions to one. With the population of the UK at 64 million and assuming that say 800,000 MAY get dementia then my chances are still around 63 million to one. Now in my book that is pretty long odds. If we go on worrying about things that MIGHT happen then we are in for a long haul. I am just getting to the end of the first stage of CBT and the reasoning behind it is sound. Challenge the thoughts. . Ask how why and when could it happen? why should it happen? what are the odds against it? I am a firm believer in the fact that if you keep your mind occupied active and busy in old age you can beat any sort of brain problem. A lot of folk retire and sit around with time on their hands and just vegetate; any wonder they get problems! My grandmother was 101 when she died and had all her marbles to the end. She brought up 8 kids during 2 World Wars and you could say she was kept busy! A lot on this site lay a lot of store by exercise. I don't. We should keep healthy by moderates exercise, yes, but that won't help  anxiety, except in the short term. Ask those who have excessive exercise if they still have anxiety. You can't run away from anxiety. The only running my grandmother did was for a bus. You sound a sensible person so don't make the mistake of falling into the trap of anxious anticipation. That can cause you more problems that a lot of imaginary diseases.            Jon.

[chronichypo 3]

Thanks Jon, that's definitely helpful, I just hope I don't have vCJD or FFI!!