Anyone Else With Bad Insomnia? Haven't Slept In 24+ Hrs Help

[little_blue_jay]

Ok I'm starting to freak out that I have something called FFI Fatal Familial Insomnia -- I know this is super rare but I am scared, this is not normal for me to not have slept in over 24 hours!

I woke up yesterday around 12:30 noonhour, didn't do much all day, laid in the sun couple hours, felt very sleepy (but not tired enough to sleep, I find for myself there's a big difference between tired & sleepy) by around 7 pm. Went to bed fairly early but put a movie on as this usually helps me nod off but I picked a noisy movie with too much shouting, and felt several times that I was nearly asleep and it would wake me up. My cat was on my belly so didn't want to get up but finally I did. Also my hamster's wheel was very noisy, had to get up several times to adjust it and finally just took it out altogether cuz I was getting frustrated) I feel maybe like I just missed my 'window of opportunity' to fall asleep then, and now I'm just so overtired that I can't sleep?

I have chewable melatonin tablets 1.5mg but I know I'm so sensitive to all kinds of meds that I used to only take a quarter of one of those, till I started to feel like it was depressing my breathing just at the onset of sleep, so I had stopped taking them.

Out of desperation a couple of hours ago I chewed a half of a tablet, it made my heart race and a groggy feeling so I laid down, but I'm still not asleep.

Please someone just reassure me that someone else out there has had bad insomnia as bad as this cuz I'm freaking out that I have this FFI!!!!

In case someone is wondering, on my mother's side nobody has ever had this, and on my father's side I have no idea, and I'm not on good terms with him and don't want to phone him just to ask him this, we've spoken years ago but who knows if he would have mentioned something like this anyway, he's kind of odd and I don't like him (I have reasons, can't go into now )

It is now 5 pm here and I'm still up! HELP ME

[Katybug]

Hi,

I have issues with this and I have not slept in over 24 hours on a couple of occasions. Most nights, I get in bed at 10-11PM but don't get to sleep until 2-4am. It is an unfortunately common occurrence in dysautonomia patients.

The only thing that has helped me although it was not lasting after my sessions were over, was doing neurofeedback. It got me to sleep between 12-2am which was an improvement. Slowly, since my sessions ended it has gotten later and later.

Strangely, a small dose of caffeine, maybe an 8 oz. cup of 1/2 caffeine coffee will sometimes have a paradoxical effect and put me to sleep. But, this can obviously backfire, especially if I misjudged the amount of caffeine.

[little_blue_jay]

OMG Katybug thank you so much for replying so fast! I'm so relieved to hear someone else has had this, this bad! THIS ***** EH

I forgot to mention that I can't even go see my doctor about this as he's away the whole month of August, his wife is having a baby, there's a walk-in clinic I can use but they always just say 'follow up with your doctor', and I don't even know if they would be able to order such a specialized test as the one for FFI, just to put my mind at ease!!!!

Yeah I got up to eat around 1 pm and had a cuppa tea with it, as I find I can drink warm tea before bed and the caffeine doesn't keep me up, I might have to get up and pee with tea but not the caffeine itself per se, but even a small meal with protein and tea didn't help.

I JUST WANNA GO TO SLEEP

Tell me more about this neurofeedback, what is it that you do? I tried to slow my breathing but it feels like it doesn't wanna slow down

[Katybug]

Hi little blue jay,

I know that not sleeping is terrible but I wouldn't freak out over it just yet. It really is fairly common. I think the worst part of it is that when I get to a certain point and I'm "overtired", then the adrenaline kicks in and I get the whole wired, can't sit still thing going. The last time I was up and didn't sleep all night, at about 5 am, I finally got up, got dressed, went to IHOP for breakfast and ran errands. I had everything done and was home by 9am. Unfortunately, I still didn't get to sleep until about midnight that night.

As for the neurofeedback, you would have to find a doc (most likely a psychologist or psychiatrist) that has the program. It is a computer program. You get hooked up to electrodes (like EEG electrodes) in your scalp and ears. Then the program is started. The electrodes track the various frequencies of your brain waves on each side of your brain. You are also wearing headphones that have music piped in. When the program tracks any frequencies having activity spikes, it inserts a signal into the music which sounds like a little click in the music. It is basically retraining the brain to calm the frequencies. You actually can do whatever during the session which is a half hour....meditate, read, crossword puzzle, etc.. You can't move around too much just because you don't want to loose an electrode connection. The sessions I did were a 1/2 hour and we're part of a research study. What I liked about it was that it was non-invasive and not another pill. It showed gradual progress for me. My guess is I would have to do maintenance sessions to maintain the hours of sleep I gained.

If you have any interest in the neurofeedback, if you tell me what general area you are located in, I can see if the person doing the research knows of someone in your area that uses this treatment.

Something that doesn't help me, but does seem to help others is soaking in Epsom Salt baths. It allows magnesium to absorb through your skin which is supposed to help sleep patterns. I know other members in the past have mentioned this has helped them.

Hope you sleep soon,

Katie

[little_blue_jay]

Thanks for getting back to me katybug!

I can't believe it but I'm still awake at 9:10 here

Yes I am interested in the neurofeedback, thanks! I'm in Southern Ontario. Didn't know it was a computer program only available through a specialist - no wonder I couldn't find any details when I googled it! That's interesting about the click, but how does the click make your brain calm itself?

I have no Epsom salts at the time, I've tried this in the past though, both in a regular bath and in a concentrated footbath and sadly it didn't do much for me. I do take pretty high doses of magnesium citrate orally (for constipation) Took about 900 mg last night so it doesn't seem to have an effect on falling asleep for me.

I found someone's blog page on her struggle with POTS and bad insomnia so that makes me feel much better that that's what's wrong and not FFI! She mentions that she 'went weeks without hardly any sleep at all' And I'm freaking out after 32 hours!

Still, I just wanna sleeeeeeeeeppp

[angelloz]

At the beginning of my illness this was happening quite a bit. I had always been a 8 hour a night sleeper and I could go for 2-3 days it seemed and not even feel tired!! This is what helped me. I found that if before laying down, I just stopped moving around, it helped. My husband would rub my back and I would try to relax. I would still only fall asleep for an hour or two at the most. If I moved around I would be WIDE AWAKE again!! It took a long time but going on my 6th year of this illness, I can sleep for longer stretches most nights. Sometimes a small amount of caffeine makes me sleepy too!. I also would take a small amount of flexeril, a muscle relaxer. Things like melitonin made me feel terrible and still no sleep. Also, remind yourself that resting is good too! It takes away some of the stress of trying to fall asleep. . Listening to the radio or book on tape with earbuds helped . NO MUSIC!!!! I would sometimes realize I had missed chapters of the book without even knowing I had slept at all. I think this problem is common with many of us.

[MomtoGiuliana]

I have experienced what you are experiencing--I've gone a couple nights in a row with no or very little sleep due to insomnia--and weeks of off and on nights of no sleep. It is the worst POTS symptom, to me, b/c it makes everything else worse. I feel for you. Rest assured you will likely get back on track soon. The other condition you mention is very rare -- and you have been diagnosed w dysautonomia.

Are you familiar with the concept of sleep hygiene?

http://www.cdc.gov/sleep/about_sleep/sleep_hygiene.htm

Take care and hope you get needed rest soon.

[looneymom]

My son has sleep issues and night time sweating problems. The only thing that has helped him fall asleep and stay asleep through the night is extended release clonidine. He takes .3 mg at night. I have tried weaning him down to a lower dosage but his problems of sleep and sweating issues start up again. A neurologist prescribed this medication for him.

If you are low in Magnesium, this can cause some sleep issues. If you can take a bath, you might trying soaking in epsom salt before going to bed.

[statesof]

I too have had on and off sleep problems since my symptoms became worse. This past year alone I think I've had 4 or 5 different nights where I couldn't not fall asleep. I find what makes it worse is when your having trouble falling asleep and then you start to over focus on it and then the irritability comes in, it creates a viscous cycle for me. I have found that waking up earlier and taking my meds on a scheduled time frame tends to help a bit.

[Loulou]

Hi everyone,

I have sleep issues as well. And one thing that has helped me is a sound machine through "Homedics". I bought it at Bed,Bath and Beyond. It was $79.00 but I used a 20% off coupon, so the price was a little easier on the pocket. It helps me rest more during the little sleep I do get. Yes, just like you I still have nights where I am up all night, but that is a POTSIE issue that we will always have I guess. But when I get to the point I can not make it any further without some sleep, then I use benadryl, but just when I have to have sleep because it will worsen dehydration, so I drink extra powerade to make up for what the benadryl drys out.

[Mikey69]

Hi Little Blue jay,

i just thought i'd chip in. I'm new on here, but i can relate to you. I've had Dysautonomia since at least 20 months ago, when symptoms became really noticable. I've always struggled to get to sleep because of severe Fibro/CFS pain, but it's never really been a big problem until reently. I began with chronic insomnia since the beginning of June - it's still ongoing. I'm on day 60 today! i also have CFS/ME and FMS, so this is really not good. I'm averaging 0 - 1.5 hrs. sleep per night without any medication. If i take 2mg Diazepam i may get 3 - 6 hrs. if i'm lucky. If i've had a night with almost no sleep i can get 8 hrs. with 2mg Diazepam. Problem is i hate taking the meds. They can be very addictive, but apparently not at such low doses. I have a very good GP luckily, and we have figured out that although i am not technically hypoglycemic, i display all of the symptoms. This is also commonplace for Dysautonomiacs from what i can gather. What is keeping me awake is a loud forceful heartbeat. It isn't fast, but loud. i think my blood sugar is dipping too low during the night, which is causing an adrenaline release to compensate and boslter blood sugar levels. My GP concurs. I'm currently taking low dose Bisoprolol Fumarate to quieten heart/lowerblood pressure. This is helping, but it's not fixing the problem. I think the trick will be to solve overnight blood sugar dips in my case. Hope this helps put you at ease a little. Chronic insomnia isn't nice, it fact, it's awful, but you'll survive! I am somehow! haha!

Hang in there and take care,

Mike :-)