falling back asleep

[ariella]

hi

Trying to figure out if this is being caused by dysautonomia, or the mestinon I am taking. I have no trouble at all falling asleep at night, but if I get woken up, I'll generally remain awake for hours (only to be exhausted the next day bringing the inevitable health crash)

I'm not yet taking steroids. Could the mestinon be doing this? I take 60mg 5 times a day.

thanks

ariella

[sally]

I'm not sure about the particular medication but I have read alot of people with dysautonomia seem to have sleep difficulties. As our family members do as well.

good luck

[Guest Finrussak]

Hi Ariella!!!

I have searched for an hour and find not one bit of evidence showing Mestinon causing sleep problems...BUT I did find several sites where the drug is being used for some Fibromyalgia pts, and since these people already have sleep problems Im guessing that if it made sleep worse they wouldnt use it?!?

however, that being said there was one site an "ask the Dr" one where the pt complained of psychiatric sx after starting Mestinon and his answer was " while these effects are not yet reported with Mestinon, theoretically its possible for anyone to have an unusual reaction as there isnt data to prove that brain chemicals other than acetylcholine arent also being affected. Plus different people process or breakdown drugs differently. That's in addition to possible interactions between all drugs ingested"...

another site suggests changin type of drug...like try the extended release or liquid instead of tabs...taking smaller doses more frequently or larger ones less frequently...anf finally if possible and not dangerous, stopping or lowering the total dosages to see if the effects go away. ( my thought is adjusting timing...how soon or late before retiring????)

Hope this helps and hope you feel better!!!

(Samantha will be on the midnite Sat/Sun flight!!! thank you so VERY much for all of your help. Hopefully she will phone you @ Jerusalem. Happy Chanukah!!!!!!)

Finette

[corina]

Hi Ariella,

I'm using mestinon for quite some time now and when I started the mestinon it made me sleep MUCH better. Before the mestinon, I could easily fall asleep and then wake up after about an hour. When I woke up that was for 3 to 4 hours and I fell back asleep again around 4 or 5 am (until I woke up by my alarmclock at 7). I've been having this sleepingpattern for years and got used to it. I had bad episodes where I woke up and didn't know where I was, what day it was (did I have to wake up the kids for school????) etc. Immediately after starting mestinon I didn't wake up during the night anymore. I really don't know why, but it happened and I was happily surprised.

I don't think this information can help you with your problem, I just wanted you to know that mestinon can influence sleep (eventhough I don't understand how ).

Corina

[DancingLight]

Hi Ariella!

I don't know if it is related to the mestinon...as I am one of the folks who hasn't tried that drug yet.

I was just glad to see your name pop up and wanted to say hi! And wish you a Happy Hannukah!

I, too, have had a lot of trouble with falling back to sleep like you describe. It's like once I wake up, that's it and it can take 3-4 hours to fall asleep. I don't know if it just wake up the darned ANS and everything has to wind down again?

The biggest problem for me is that I inevitably wake up to pee in the early morning...long before I am ready to get up for the day, and after that my sleep is shotty at best. And I often cannot fall back to sleep once I have had to pee! It's a pain!

I have had my sleep pattern change a lot over the years with this...trouble falling asleep, staying asleep, falling back to sleep, etc. etc. Meds definitely affect it for me...but I don't know about the mestinon! Sorry!

Just wanted to say hi!

Emily

[Ernie]

Hi Ariella,

I have bad insominia. I need to take sleeping pills 2-3 times per night but I did not notice an aggravation when I was trying Mestinon.

[ariella]

thanks guys

I don't think it's the mestinon. The mestinon actually helps me sleep because it gets rid of the miserable muscle ache I get at night. Mestinon isn't working really well though since my flu shot 6 weeks ago. No literature on that, but this is the way it is for me right now.

Maybe I just need a vacation from me??

Happy and healthy holidays to everyone

Ariella

[FarKry]

its the disease and your own genetics. i'm not sure about that medication, i don't take it. however, i do know that some people that after being awaken by someone or something they can't go back to sleep, yet others turn over and its lights out again. its the difference between being a morning person and being a rock sleeper. the disease is only responsible for being tired the next morning.

from what i know this is accurate. but then again i'm wrong sometimes, still, as far as my knowledge carries, this seems to be what's going on.

[Mrs. Glass]

Hi I dont know if the meds are causing it or not. I only know that before I was on any meds at all, I either couldnt fall asleep and if I woke up for any reason I didnt go back to sleep. Still to this day even being on Ambien, some times I can not fall asleep and I dont sleep but three to four hours a night. Makes for a very long day with nothing to do but watch tv or stare at the cieling. Wish I could help more. Vanessa

hi

Trying to figure out if this is being caused by dysautonomia, or the mestinon I am taking. I have no trouble at all falling asleep at night, but if I get woken up, I'll generally remain awake for hours (only to be exhausted the next day bringing the inevitable health crash)

I'm not yet taking steroids. Could the mestinon be doing this? I take 60mg 5 times a day.

thanks

ariella

[CelesteVai]

I would be willing to be that it is related to dysautonomia. I have been on multiple websites (searching for answers to my own symptoms) and Insomnia seems to be a recurring symptom on all the lists. I'd ask my doctor, perhaps they can tell you?

[taylortotmom]

Sleep problems are also related quite convincingly to depression. The inability to fall asleep and moreso- waking up and not being able to get back to sleep are indicative of depression. So.... if you pursue this with a physician just understand that this is a legitimate part of depression. There are some wonderful drugs that can help with this sx that are NOT addictive. I am on Klonopin (very low dose at night) because even though I might be asleep my legs are still wide awake (Restless legs syndrome). Ambien works for some but never did a thing for me. There are some heavier drugs that I tried briefly but felt were too strong for me (I have kids and did not want anything to knock me out cold). So.... whether or not dysautonomia is the culprit- I don't know. But chances are if you pursue this (which I hope you will if it continues to disrupt your life) you will be put on a psychotropic med to help you sleep. I guess what I am trying to say is this is one case where a doctor is not dismissing a sx as "all in your head"- this sx really can be helped with psychotropic drug intervention. Hope this helps.

Carmen

PS I don't know if you remember me saying this before, but I was a therpaist prior to becoming ill and it was very hard for me to go on psychotropic meds at first. No more. I will sing it from the mountaintops. If there is a pill that will help- take it.

[Sunfish]

for me mestinon didn't change my sleep habits/patterns/difficulties at all...

re: insomnia issues in general, i'll apologize as i've been on a bit of a rant lately in terms of encouraging sleep studies whenever sleep problems are mentioned, but it may be something to at least keep in the back of your mind. i thought i "just" had insomnia problems - sometimes trouble falling asleep but more often waking up throughout the night - and ends up i have pretty notable sleep apnea. with treatment my sleep is already TONS better in less than a week. i had tried sleep meds and they had either done nothing or made things worse.

there are so many things that can influence sleep from so many directions so i do hope you're able to get to the bottom of it & get some better rest. i definitely know how tough it can be.

melissa

[ethansmom]

This happens to me a lot as well, and it never did before I had POTS. The only meds I am taking is a beta blocker, but there have been times when I am not taking any meds and it still happens, so I am thinking for me it is more POTS related.

My 6 month old still wakes frequently at night which has exacerbated this problem lately and I am exhausted, so I understand where you are coming from. It's very frustrating!!

[ariella]

thanks everyone for your replies.

I think it's partly because I've had an exacerbation of my other condition, tht's been sending me to bed around 6pm. So my internal time clock may be off--a couple of hours of sleep and my body doesn't know what to with that information. Like perpetual jetlag. I'm not otherwise depressed. I probably do have undiagnosed adhd, which could be contributing. Like my brain is on fast forward all the time. I don't want to pursue it now for risk of complicating treatment of my other condition. The sleep apnea is interesting. Don't know if I have sleep apnea, but I have been having frequent respiratory distress associated with my other condition. Possibly that's contributing to me waking up. I'm going to be starting 40mg/day of steroids this week, if my insurance doesn't approve a more effective yet expensive treatment for my myasthenia gravis. That should have me up and running all night:)

Loads of love to all of you

Ariella