LindsayI don’t want to brag, but I’m pretty awesome at sleeping. Pretty much anytime, any place, for any length of time. If there was a country called “sleep”, I’d be the President. I could rock that job in my – HAHA – sleep.
As you probably know by now, I take a half of a beta blocker pill each day to help with the tachycardia. And, except for the occasional bad day, the beta blocker does a great job of keeping my pulse at a reasonable rate. However, lately the beta blocker seems be less effective, especially at night. Suddenly, sleep and I are no longer BFFs.
A couple months ago I began waking up in the middle of the night with a very intense adrenaline rush. I would be breathing heavily and quickly, almost hyperventilating, and had severe chest pain, but no idea why. I started wearing my heart rate monitor to bed and recording my sleep to see what was going on. I discovered by heart rate was spiking at night to about 130. This is quite a jump from my usual 40s-50s heart rate while sleeping, or 50s-60s when sitting. It is only when standing that I see my heart rate go this high, so it is very unusual.
Suddenly, it made sense why I was waking up multiple times throughout the night, breathing heavily as if I had just run a few miles. Because my heart was acting as if it had.
The adrenaline rushes are difficult to describe, but this is how I expressed it to a friend:
It registers for a moment before it happens – I’m consciously aware that I’m asleep. Peacefully asleep, but I can sense that’s all about to change. Like the calm before the storm. I awake with the loud drumbeat of my heart in my ears and bolt upright. I scan the dark room to orient my surroundings. Good, I’m at home. Good, the BF is here, and no one else. Good, I’m not dead. I can hear the hurried breaths of air being forced in and out of lungs, and pray it is mine. A heightened perception of awareness invades my senses and suddenly I am mindful of every object in the room. The comforter has drifted two inches to the left from the last time I awoke, the soft hum of the fridge has increased one decibel, and I don’t like the scheming look the nightstand is giving me. I am overcome with the most basic instinct of survival: to fight it out, or flee. But there is no one to fight, and nowhere to flee. I try to slow my breath while whispering over and over, “There is no danger here. There is no danger here.” Eventually I lie back down, content for the moment to neither fight nor flee. After all, I am still in my reindeer jammies.
Waking up like that multiple times per night is starting to wear on me. I’m exhausted. I’m tired of waking up overflowing with adrenaline. I’m tired of the tachycardia and I’m tired of the associated chest pain that continues all morning. I have no idea what is causing the nightly adrenaline, and I don’t know how to stop it. Falling asleep is never an issue, so why is staying asleep?
I tried taking the BB in the morning, instead of before bed. No change.
I’ve tried taking melatonin to help me sleep – that gave me worse tachycardia.
I’ve tried other “natural” sleep aids, but almost all have melatonin.
My goal is to get off all regulated medication, so I’m not interested in ambien.
Diphenhydramine HCI gives me tachycardia, so things like Zzzquil won’t help.
I already take an antihistamine nightly, so things like Benadryl won’t help.
I’ve tried meditation and relaxing sounds. They just make me feel like I need to pee.
I’ve asked the BF to sing me lullabies. He wont’ do it.
I guess my next step may be to try taking half the beta blocker at night, half in the morning (so one whole pill, per day). However, I have actively been taking steps to eventually get off all medication, so this is not an attractive option. Perhaps there is another answer:
- Samuel L. Jackson reads Classic American literature, “Go the F*ck to Sleep”
Heart, go the f*ck to sleep.
“The woods are lovely, dark and deep. But I have promises to keep, and miles to go before I sleep.” — Robert Frost
– Linds
Hi Linds, sorry to hear this is still happening for you. I am finding around dinner time I’m shaky and tachy. This used to be the time I felt better. I take my atenolol at 6.30pm so once it’s in my system – about an hour, I feel much better. I think this may be from decreasing my dose or getting used to the atenolol. I’ve read both can cause these symptoms.
I wonder if your overnight tachy and adrenalin rushes are a result of your bp dropping too low while sleeping. This is what mine is when it happens as I was able to catch it once. It’s the body throwing out adrenalin to get the bp up. It’s common with taking beta blockers with pots. Does that monitor your wearing record your heart rate all night and did it drop low at any time?
That’s a good point – it could be my bp. My monitor only checks heart rate. I do have a bp cuff, but I always imagined by the time I got up to get the cuff, put it on and checked, my bp would have returned to normal, if it was low (or high). I rarely check my bp since it usually on the loiw side of normal, but might be a good idea to start checking it more often!
Also, some antihisthamines can drop bp – the older gen ones such as polaramine. Which one do you take?
i take zyrtec as part of an H1 and H2 combination for mast cell.
Is Zyrtec the H1 or is it H2 aswell? What H2 do you take if Zyrtec is only H1? I get heartburn all the time.
Zyrtec is the H1, and for the H2 I take zantac. You might want to check out this post – https://dysautonomiac.com/2013/08/22/mcad-fms-and-other-random-letters/
Great thanks Linds I’ll have a look at it.
Do you find the h1 and h2 help Linds? Have you been on them long and how long does your doc want you to trial them for? Thanks!
i have been on the H1 and H2 for about 6 months now. at first i wasn’t sure they were helping, but after stopping them for about a week, i realized they do help, so i have continued to take them.
Gads, you an dI have such similar issues – the inability to take dipenhydramine or melatonin…meditation totally makes me have to pee (I’m not alone in this one! Yea!)…but I cannot sleep AT ALL unless I wait until 4am and THEN I can sleep.
When I was dx’d with my dysautonimia, I was tachy ALL the time. 130 was common. Then the BP would spike and make life HELL and end me in the ER. Then, of course, at times, everything would tank and I would pass out.
I started to do Qi Gong meditation. The standing still kind – not the sitting kind. It’s called “primordial” Qi Gong – none of the fancy movements. There are arm position, but that is it. Within one month of doing 20 min daily, my pulse became bradycardic ( as low as 33 at times) and hasn’t been above 80 in 2 months now. My doc, who is REALLY into Chinese medicine by chance, halved my dose of BB and now, everything is back to being manageable (i.e., when my BP spikes, I take a Clonidine.)
The first 2 months, the Qi Gong seemed to help me sleep. Now, not so much.
I’m back to “haunting the house” (as my husband calls it) and being up until 4am.
Honestly, I think its is just our disorder. We know it can be cyclical and changes as time goes by. A change in a hormone level can send things reeling, upsetting digestion, blood sugar levels (due to stopping the pancreas from secreting its hormones), etc.
And, adrenal hormones most def cause tachycardia…soooo…..
My doc thinks it is my age (ack) causing my problems. I just turned 50 (gads, I don’t ACT 50). She thinks that since hormones get wacky starting around the early-mid 40’s, they are just getting wackier. And, hormonal levels change hourly, so blood tests are not going to show squat. You should see the fluctuation I have in my levels over the past few years – but again, ANY endocrinologist or women’s health specialist worth their salt will KNOW that hormone blood tests are highly unreliable.
So…I wish I had a solution for you.
Other than just letting your body sleep when it wants to (which is the advice I have been given)…nap to catch up when you can.
I want to take a pill that knocks me OUT. All of my sleep tracker tech (I use 4 at once!) shows I am barely sleeping all night and get a max of 4 hours of real “sleep” and actually awake much more than I thought.
(oh, don’t waste your time with sleep specialist either. They’ll just try to sell you a CPAP machine you don’t need and convince you that you have “anatomical” sleep apnea vs the kind overweight people get (obstructive). I know, factually, that those “at home” apnea tests they force you to take before you go to a sleep lab are RIGGED to show apnea. I wore one and was WIDE AWAKE all night. The asshole doc said I had apnea. I told him that it was impossible – that was up, actually moving around and DOING THINGS that would be verified since Iw as using my computer most of the time. A little red light would come on when breathing “ceased.” I watched this little light flash on over and over. What SCAMMERS!!!!!)
If I find an answer, i’ll let you know.
i had a sleep test done years ago and, yes!, such a waste of time. i barely slept throughout the test (kind of hard to sleep with wires everywhere and a tube in front of my mouth).
i’m relieved that i’m not the only one that goes through this, but am sorry that you do, too! i think you’re right about this being cyclical – with a beta blocker my hr is rarely high. for a while i was having issues with bradycardia, now i’m back to having tachycardia. so frustrating – once i think i finally have a handle on this condition and have my vitals stabilized, it changes on me!
thanks for your comment – hopefully we’ll find an answer soon!
Thank you for helping he not feel so alone…I really needed that today.
Oh I dislike night time tachycardia. I refer to it as waking up ready for the zombie apocalypse.
Ha! I call it “the ninja response” 🙂
Hi Lindsay. This was happening to me until we changed up the timing and dose of my beta blocker. I take 15mg of nadolol/day: 5 mg in the morning and 10mg in the evening (around 8pm). This really helped me with the same situation you describe: tachy was controlled except for those wee morning hours. That being said, in the few days before my period, I can still get a little tachy at that same time (3 or 4ish am). Exercise sometimes helps me. That is my two cents! Thanks for your blog and for sharing.
Stephani, thanks for your two cents! Perhaps starting to take my atenolol both in the morning and at night will prove to be helpful! I often take it just minutes before going to bed. Maybe even just taking it an hour or two earlier would also help.
Thanks for reading!
A lot do take their atenolol twice a day. I tried it for a while but was too zombie like in the day but it was also increasing the dose rather than just halving the dose I’m on instead. I’ve just sat up in bed and my hr is 100 so I’ve taken a tiny dose of atenolol and I’ll take less tonight. I’m going to give it a go twice a day again Linds and see how that goes. I know someone else taking pindolol and they say it’s really worked well for them than other bb’s as they have lung problems. Have you tried others Stephanie or just the pindolol? And how do they compare for you? Have you had florinef?
Nandolol not pindolol!
It’s always so odd to read this–since we match up.
Melatonin makes me so sick too!
But L-theanine vitamin works. Though the effect wears off after a few weeks–then I stop–don’t sleep a few nights–then get back on it again and it works.
And it’s one of those all natural can’t hurt, might help sort of things.
For me that’s RARE!
Pretty much anything that helps me sleep also lowers my BP–meaning waking up shaking and sicker.
Lastly, iron supplementation.
Turns ouut part of my inability to sleep was iron def anemia that ONLY showed up when a serum iron level was run.
Somehow my body was still producing sickly red blood cells with 4% iron instead of 40%. Though my RDW (number of malformed red blood cells) rose to the point one doc thought I had sickle cell or a severe bleed someplace–in fact just long ignored anemia (get CBC test results because docs ignore this).
Once I began taking iron I also began sleeping better again.
Low iron causes low bp–something we need no help with!!
But no mega doses–just 100% of the rda daily. Or even start with 1/2 iron pill. Seems anything I take can be a problem so it’s best to start very slow.
BTW iron helps constipation as well. Just sayin~~~
Other than this, I can only suggest moving to a state where medical herbs are legal. This also helps sleep with no dys side effects other than the obvious giggles if you use too much. Use ridiculously low doses of high cbd low thc herbs for best results with fewest side effects. But ONLY if your doctor says so and ONLY if this is legal where you live.
Hope this helps someone.
Sleep well my friends!
Hi Sandy – interesting that you mention iron. I have low iron as well and have for years. I have not had my iron tested recently, but I have been bad about taking iron supplements so I assume it’s probably low. I never stopped to think that iron had anything to do with it, but might be worth having it tested.
I have not yet tried L-theanine. If that has worked for you in the past, I might look into it.
Thanks for the suggestions!
L-theanine works for me and for my non-dys hubby as well. Perhaps it is, yet again, like iron, b-12, D another vitamin def we tend have? But I do tend to adapt to it quickly–so I only use it when I can not sleep without it. Melatonin actually showed up on a dys doctor’s office application as stuff we shouldn’t take–no clue why–but it seems it is widely uncomfy for dys folk. Made me feel awful and did not help me sleep!
Another issue with waking up adrenal is blood sugar dropping low along with bp. I try to eat some sort of rough carbs –whole grain– with protien–string cheese or almonds as a night snack b4 bed. And no sugary treats/sodas to cause rebound blood sugar issues at night–or at all really since sugar is another trigger for me.
My dys doc (who also has dys himself) says it’s an autonomic dysfuntion that causes our bodies to dump all our wake up hormones all at once instead of a slow drip to gradully wake us up like other people. It is common for this to happen at exactly the same time each night–or the same number of hours after going to sleep.
He has me on clonidine taken 1/2 day and 1/2 at night to try to re-train my body to sleep properly with 1/2 ritalin during the day to keep me awake and clear during the day. I sometimes substitute sudafed for days –but the idea is to stimulate during the day and relax at night until your body gets back into the proper timing.
Google anemia and you will find all of your dys symptoms there as well.
Something to think about.
Also note that they say it takes 6 months AFTER your blood work comes back normal still taking iron to replenish iron drained from bones during anemia. Which is where I kept messing up since taking iron is not fun.
There is an iron supplement called Hemoplex the NPract told me about that is used for chemo patients to help rebuild blood volume quickly with fewest side effects. It also has C and B vitamins to help the iron work better. (Yep I said blood volume is too low– lost due to anemia –ringing any bells here yet for dys people?)
Thanks, Linds for this place to communicate with others like me!
I swear I read that roller coaster dropping off the top thing and went WOW! I use that line constantly to explain the feeling of dys attacks. It helps to not be alone. Cause so often we are.
Sandy
I use a combo of melatonin and 5HTP. I used to have episodes where if I rolled over it felt like I was dropping from the top of a roller coaster straight down. If I sat up in bed it would happen. It was horrible.
Oh ignore that – I’m totally wrong which bb I’m thinking about – it’s not nadolol or pindolol it’s nevibolol! Selective like atenolol so less effect on the lungs.
Hmm, I’ve never heard of nevibolol, but I guess my doctor seems to only like atenolol, propranolol and nadolol.
Yep same for me. I think they are the more common beta blockers.
And that was in response to Stephanie’s reply who’s taking nadolol as I got hers confused with the nevibolol. There are so many on different ones it gets very confusing 🙂
Hi Lindsay. This isn’t sleep related but can you tell me what model of wrist HR monitor you have by Polar? I bought a different one but it’s not able to give me min & Max HR over a period of time.
As far as sleep, I take ambien. I tried other natural remedies but had no luck. I’m still a few years away from kids so for now I’m ok with meds.
my hr monitor is a polar FT7. I just got it about a month ago. it also comes with a chest strap which communicates with the watch. it is primarily designed for athletes to record workouts. the watch usually just displays the time until i press ‘start’ to record a workout. then, the monitor displays my current HR and will record my heart rate until i press stop. once i stop the recording, it will tell me the max HR and average HR during the time i was recording (as well as a few other details like calories burned).
I take these things called “Moon Drops” but I’d bet they have Melatonin in them.
I looked into the “Moon Drops” and unfortunately they do have melatonin. Melatonin seems to work great for a lot of people, but not me, for some reason. Glad you find it helpful!
Do you by any chance have Ehlers Danlos Syndrome? Dysautonomia runs with it and causes those heart rate spikes at night. Beta blockers were not controlling mine. Turns out, I had UARS, which is like apnea (but without the oxygen desaturations). The drive to breathe in my sleep was spiking adrenaline beyond what the beta blockers could control. Cpap and an oral appliance saved me!