roxie Posted August 29, 2012 Report Share Posted August 29, 2012 A while ago I watched this video about sleep disturbance in EDS. Watch the video linked to here:It sounded so like me, I requested a copy of my sleep study that I was told was "normal" bc I didn't have any apnea and found my HR is absolutely insane at night & that I don't have deep sleep. A number of times my HR was over 190.My dr has been seeing this pattern in his POTS patients and has been having success with low dose beta blockers before bed.I've been on them for 3 weeks now & am starting to sleep better. It's easier to get up in the morning and I'm starting to feel clearer .If you have trouble sleeping this may be helpful! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 29, 2012 Report Share Posted August 29, 2012 Thanks for bringing this up. It's quite interesting and it makes me wonder...I've worn a 48 h Holter monitor several times and I was surprised to see in the report that my HR reaches values over 100 frequently while I sleep despite being on 10 mg propranolol 2x day. Also, my sleep does not feel refreshing at all and I have the strangest dreams ever (I honestly think the cause for the insomnia and the dreams to be the 10 mg propranolol I take before bedtime as it crosses the blood-brain barrier, but then why does my HR get that high when i take propranolol?!). Another weird thing is that I take clonazepam before bedtime as well and that's supposed to help me sleep...in my dreams (no pun intended). Guess who's counting sheep at 3 AM every day? If i may ask, what beta blocker are you taking bananas? I know propranolol is the most non-specific and the most prescribed for POTS, plus I tried bisoprolol before and it was a bad experience for me. Alex Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 29, 2012 Report Share Posted August 29, 2012 I watched this video when the link was posted and also found it really interesting. I talked to my doc about it and he ordered a home sleep study because there isn't a lab close by. So essentially they were looking for apnea, but it also measured heart rate. I have yet to see my doc to get the results, but I don't think it will be super helpful because I had a very wakeful night ( and without the benefit of monitoring in a lab, I think it would be difficult to distinguish from the data whether I was asleep or awake)Bananas, I'm glad this seems to be helping you! I think sleep is half the battle for some, if not all of us. Do you have issues with brady's or hypotension? (I know he addresses that issue, but I'm just curious My resting heart rate is consistently 50's but has been 40's lately in the evenings before bed - and I know it dips lower when I'm asleep (in between bursts of tachy). Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 29, 2012 Report Share Posted August 29, 2012 I have sleep apnea and sleep with a Cpap; I also am on clonazepam at night together with Bystolic 5mg. right before bedtime. I also have MVP. I used to wake up with tachycardia and palpitations every night. I existed like this for many years, and was literally dying for lack of sleep!! I chose to take my Beta Blocker at night, so I wouldn't be so lethargic during the day. Bystolic is cardioselective and long acting beta blocker, with 12 hour half life, so I decided it would help me sleep as well. I tried atenolol first, and it didn't last long enough, and caused my HR to plummet, so I had to get off of it. On the third day of withdrawl from atenolol, I had a physiological panic attack, and was immediately given the Bystolic. It took me awhile to get adjusted (was a slug for awhile), but I now sleep through the night, which makes a whole lot of difference in my quality of life!! I do not have EDS...but possibly could have Marfans, which is another connective tissue disorder. The average neck size for sleep apnea for women is 16 inches; my neck is 11 and a half inches, so I find this rather interesting. Just so you know, supposedly 30% of people with Dysautonomia have sleep apnea, so getting tested at a reputable sleep clinic per Dr. order is imperative!! Quote Link to comment Share on other sites More sharing options...
roxie Posted August 29, 2012 Author Report Share Posted August 29, 2012 I'm taking propranolol Alex. My dr has said though we can try others if needed. Peace, I dont have a problem with those. My bp is slightly lower but not drastically and my HR has always been so high it's hasn't been a problem yet. My sleep study said my average HR was 85. Isn't it supposed to drop in sleep? I also had a ton of awakenings during my sleep study. I only slept for 2 hours in the 6 hour monitoring period and I had 26 awakenings in those 2 hours. Quote Link to comment Share on other sites More sharing options...
roxie Posted August 29, 2012 Author Report Share Posted August 29, 2012 Wow kimbell that's interesting!I know the worst things with propranolol is that it doesn't last. My dr has me take it & then if I wake up, which I always do, take another one., Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 29, 2012 Report Share Posted August 29, 2012 Bananas,I only had 2 REM stages, where the normal is about 5...and I had 91 arousals...79 were respiratory related. I only had 15 apneas in total, but 64 hypopneas, which are inadequate breaths!! Mind you, I was on clonazepam already....I didn't sleep enough the first night, so they had to give me clonazepam and ambien for the second study!! I dreaded the second time around, but I am so glad that I persevered, because my Cpap is my friend Quote Link to comment Share on other sites More sharing options...
roxie Posted August 29, 2012 Author Report Share Posted August 29, 2012 Good to know 5 rem's is what's normal. I have been wondering what normal sleep is?None if my arousals were respiratory actually. Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 29, 2012 Report Share Posted August 29, 2012 This is really interesting info. Thanks Bananas for posting it and Kimbell for adding to it. Had seen the video when it was posted previously, but appreciate the additional info.Just had a sleep study last week. Felt really weird doing it because I totally don't "fit the picture" of the typical sleep apnea patient. Didn't get much sleep at all (even with 2 doses of ambien), so will be curious to see what shows up. I was planning on asking for a copy of the study based on that video and definitely will now based on your experience Bananas. So far my only results are tape burns and blisters all over my skin from the tape they used to adhere the sensors. Quote Link to comment Share on other sites More sharing options...
roxie Posted August 30, 2012 Author Report Share Posted August 30, 2012 Definitely let us know what you find! It may help to be clear on exactly what info you want. The first time it was "it was normal" and I had to say "I want to know my heart rate, my oxygen levels, my arousals amounts & times". EtcI wasn't given anything to sleep so I guess I don't have to feel so bad I didn't sleep, lol! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 30, 2012 Report Share Posted August 30, 2012 Just for the record, supposedly 30% of those with dysautonomia have sleep apnea...the average size neck for a woman with sleep apnea is 16 inches, and my neck is 11 1/2 inches! I thought that was funny So, is it obstructive or central apnea? Kind of makes you wonder...My oxygen levels were normal. I had so many wires (124), they had an EKG, EEG, leds (about 30 in all) and belts, for limb movements, respirations, O2 concentration...It was very thorough. They even watched me on camera...that was a little creepy...lol Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 30, 2012 Report Share Posted August 30, 2012 My nightime sleep study showed that I am tachy during sleep too and that I do not reach REM very often. It showed I have very mild sleep apnea (not enough to treat) but when they saw that my daytime study showed severe daytime hypersomnia, they tried me on a CPAP machine at night. I couldn't take it...it made me nauseaous and tachy. So, now I go through cycles when I can't fall asleep at night and then sleep late into the morning. SOmetimes I barely sleep at night but have hypersomnia during the day and have to take many naps. Then, all of a sudden I'll seem to sleep ok for a while...normal fall asleep time, stay sleep, wake up at a normal time for an adult in the morning and stay up during the day. I have no more idea than the man in the moon what dictates these cycles...I guess its like the rest of POTS...unpredictable. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 31, 2012 Report Share Posted August 31, 2012 Katybug...do you have anything to help you sleep with your Cpap? I take a very small dose of Clonazepam, and it helps me sleep...I went years like you are doing, and it wore me out. I was so sick, I had to do something differently. I was barely surviving....it's amazing the difference it has made for me . Don't give up!! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 31, 2012 Report Share Posted August 31, 2012 Just for the record, supposedly 30% of those with dysautonomia have sleep apnea...the average size neck for a woman with sleep apnea is 16 inches, and my neck is 11 1/2 inches! I thought that was funny So, is it obstructive or central apnea? Kind of makes you wonder...I find this really interesting re: obstructive vs central. I usually don't wake when I'm sleeping on my side - it's only on my back when I wake with a choke - so that would look like obstructive. But, like you, my neck size is smaller than the average and I don't snore, so no one hears me stop breathing. I have had the distinct feeling that my brain just forgets to send the message to breathe, but I can't explain why it seems worse when I'm on my back (unless it's a combination of central/obstructive). Also, I was sitting up at the computer one day when I tried to swallow and my throat just locked up and I couldn't breathe until I forced a cough - so I think that would indicate there is a central issue and sometimes the brain messages are just not getting through. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted September 1, 2012 Report Share Posted September 1, 2012 Just for the record, supposedly 30% of those with dysautonomia have sleep apnea...the average size neck for a woman with sleep apnea is 16 inches, and my neck is 11 1/2 inches! I thought that was funny So, is it obstructive or central apnea? Kind of makes you wonder...I find this really interesting re: obstructive vs central. I usually don't wake when I'm sleeping on my side - it's only on my back when I wake with a choke - so that would look like obstructive. But, like you, my neck size is smaller than the average and I don't snore, so no one hears me stop breathing. I have had the distinct feeling that my brain just forgets to send the message to breathe, but I can't explain why it seems worse when I'm on my back (unless it's a combination of central/obstructive). Also, I was sitting up at the computer one day when I tried to swallow and my throat just locked up and I couldn't breathe until I forced a cough - so I think that would indicate there is a central issue and sometimes the brain messages are just not getting through.I've always thought it is a little of both, but supposedly, that is not uncommon even with those without dyautonomia, but because of our weird unbalanced nervous systems, and I also have difficulty swallowing on occasion, I'm always thinking about this, and that is why I am very diligent wearing my Cpap. I have heard of people actually dying from sleep apnea, so I don't take any chances. It's like SIDS in infants. They don't know enough about that either; so I choose to be cautious!! Quote Link to comment Share on other sites More sharing options...
roxie Posted September 1, 2012 Author Report Share Posted September 1, 2012 Hmmm, ya know mine didn't show any apnea but I sleep on my stomach the most. Sometimes if I do sleep on my back, which is rare, I'm woke up by like a startle or deep breath thing. Im also petite, I know my neck is no where near 16 inches. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.