Worrying about having SFI is NOT warranted
Posted , 4 users are following.
I am new to this forum & i to have had just recently the worst bout of insomnia of my entire life. im a 51 yr old female & i have & still having what feels like i'm wide awake all night but know that somewhere along the line i am getting some sleep. in my case i feel that my insomnia is due to menopause & anxiety fueled by not being able to sleep properly. I to was guilty for about a week thinking i had this incredibly rare disease, but common sense provailed & i got over it. Im mainly writing this in agreeance with neckbone that to anyone out there that thinks they have this disease just let me reassure you that the odds of having SFI is literally 1 in 100,000 million! You have a better chance of winning lotto 10 times over. Dont let your anxiety rule you on this one. Its called irrational thinking.!
0 likes, 11 replies
lily65668 michelle70460
Posted
Thank you Michelle, it's always good to hear the voice of reason on these boards!
I too am sure you're right about getting some sleep somewhere along the line. I'm a lifelong insomniac. I was a difficult sleeper even as a child, and my sleep pattern was permanently wrecked when I spent a year or so working an impossible experimental shift system as a nurse in my mid-20s. I too used to think I didn't sleep at all for nights on end, but partners and roommates often commented that I had indeed been asleep (and snoring) for short periods throughout the night.
For any other reader who doesn't believe this is possible, google "sleep state misperception".
Incidentally, I specialised in neuro after qualifying as a nurse. I did a six-month course and stayed in that field for 18 months. And I never once heard of S.F.I. (Not surprising really, as that was in the late 60s, it was only identified around 1950, and even in the present day there've only been about 100 confirmed cases worldwide.) I came across plenty of other prion diseases, but never this one, and we certainly weren't taught about it.
I sympathise with your problem. I too found that my sleeping problems (along with just about everything else!) got worse around the menopause.
The good news for me was that as soon as I retired from paid employment at age 66, I immediately started sleeping like a baby. I suspect there's a message in there... Now, coming up to 75, I only have problems sleeping on "nervous nights", e.g. before a journey or a presentation in my voluntary job. I don't believe that all the years of poor sleep have affected my health in any way. I've suffered from a minor autoimmune condition for the past 25 years, but that runs in my family and I don't believe poor sleep has anything to do with it. One sometimes reads dire warnings about the effects of prolonged insomnia on the heart, blood pressure, sugar metabolism, cognitive ability etc., but none of these seem to have happened to me.
I hope my post - as well as those by sensible posters like Neckbone - will have allayed your anxiety. Poor sleep is something that can be worked around, even if it does cause daytime tiredness.
michelle70460 lily65668
Posted
hi lily, i've been reading your posts on this subject even before i joined & yes insomnia in itself is bad enough without worrying about something thats ALMOST unheard of. Oh how powerful the human mind can be especially once we start googling diseases no matter how rare they are. im convinced that this is to do with menopause but according to my doc i should be past it. (i think he needs to go back to medical school) cos the effects of meno lasts for years & im only 51 & its all happening especially my change in sleep as i once was a good sleeper but enter menopause. No longer
lily65668 michelle70460
Posted
You could be right about menopause Michelle. The length varies enormously from one woman to another. In my case the symptoms - both physical and mental/emotional - started 4-5 years before menopause, but only lasted for about 18 months afterwards. However, I have friends who are still suffering years after the event.
Unfortunately, many doctors have a one-size-fits-all mentality when dealing with any situation or disease, which can be unhelpful. It's often best to go with your own intuition, especially regarding things like menopause.
michelle70460 lily65668
Posted
yeah u are right. in perimenopause i started waking every couple of hours but would go back 2 sleep. without getting to personal my last period was only 18 months ago but this bout of insomnia started outta nowhere & is by far the worst 1 i ever had. this business of not feeling like im asleep is soooo annoying.
atulit75078 lily65668
Posted
lily can u plz check ur message box. i have dropped u one message.
lily65668 michelle70460
Posted
I think you'll just have to tough this one out until you start sleeping better. It's natural that a bout of insomnia will shake your confidence in your ability to sleep for a while.
Have you thought of trying a very small dose of an over-the-counter antihistamine - preferably one of the older ones that make you more sleepy? That's how I survived 40 years of insomnia.
However, it's very important not to take an antihistamine every night, as you can develop tolerance to them, just like regular sleeping meds. I used to take 5mg of Phenergan (promethazine) for a maximum of three nights in a row. This would give me a bit more sleep and partly restore my confidence in my ability to sleep. Then I'd go at least a week before taking it again. 5mg is a really tiny dose btw. A 2-to-4-year-old child can take up to 15mg at night.
This worked for me for 40 years, and I never developed tolerance to it. If you are going to try an antihistamine it's best to take the dose an hour or so before going to bed, to give it time to work. They don't knock you out, so if you take it at bedtime you'll still be awake an hour later wondering why you're not asleep, and the whole anxiety thing will kick off again. Oh, and don't take a second dose if you wake in the night. Even such a small dose of Phenergan used to make me feel groggy in the morning if I took it after midnight.
I'm sure you'll come through this, one way or another. And don't forget - poor sleep, even for long periods, won't harm your health. If it did, I'd be dead by now!
michelle70460 lily65668
Posted
hi again lily. i've tried antihistamines before(not this time) but they didnt work 4 me. Doc recently put me on 10mg temazepam & i gave them 2 a friend (who's been on them 4 25yrs) cos they were useless. Maybe i'm just a hard nut 2crack. lol. i think u right, i'll just have 2 grin & bear it until hopefully it passes. it just makes getting though the day harder when you're always feel like your eyes need match sticks to hold them open. i've had bouts of insomnia before but not quite like this. And u r right, nobody ever died from insomnia.
lily65668 michelle70460
Posted
Probably a good idea not to continue with the temazepam. They're horribly addictive. I know what it feels like to be tired all the time, but I'm sure you'll eventually come out the other end of this time.
michelle70460 lily65668
Posted
Yeah i quickly ditched the temazepam & when doc gave them to me i did mention i dont think they're the answer. Docs like to give them out cos its easier rather than getting to the root cause. I forgot to mention before that i'm trying a completely batural product called SEREMIND which is pure lavender in tablet form which is supposed to relieve anxiety & sleep problems over time. Much safer than sleeping tablets.
Gareth51625 michelle70460
Posted
Very true Michelle. Would anyone have heard of SFI if they didn't have the internet? not much chance. In some ways the internet is a good thing but googling stuff often ends up making people extremely anxious when they stumble upon extremely rare conditions they THINK they have. You would have more chance of being struck by lightning a few times than getting that disease. Also I don't think sleeping pills like Temazepam are the answer. I've not taken that particular one but tried a few other similar ones and in my opinion they mess up your own sleep for weeks and months after you quit. In fact my insomnia went worse after I stopped them, waking up every hour with sweats....took over a month to sleep a few hours before waking. I think they are made to get you hooked on them - the withdrawal makes a lot of people go back to taking them. Let's face it pharmaceutical companies don't get profit from people who have nothing wrong with them.
michelle70460 Gareth51625
Posted
I agree with u gareth that sleeping pills are not the answer & i did actually say that to my doc. I think 4 most docs its the easy way out rather than get 2 the root cause with requires time & effort. i'm taking a completely natural tablet now called SEREMIND which is pure lavender & is supposed to help ease anxiety & improve sleep over time. As i mentioned in my post my main problem is sometimes having diffulty getting to sleep or i know i've been asleep but it doesnt feel like it & i just feel awful the next day. But hopefully over time it will improve. And yes u r right u have a better chance of getting struck by lightning or as i said in my previous post the odds of getting SFI is literally 1 in 100,000 million as that is actual printed fact. Winning the lotto has odds of roughly 1 in 11 million. Might go & buy a ticket. LOL!