Symptoms Worse At Night

[Debbie Rose]

I am going off my beta blocker in preparation of my Neuro Appt on Friday and so the OI/POTS is back. But my Symptoms have always been worse in evening or night and of course anytime I overdo...Maybe I am depleted in some chemical? Anyone else have worsening at night?

[ddschool]

Yes, I do. Mornings I feel the best, then about 1pm, I start tapering off w/ energy, getting worse as evening goes on.

[brethor9]

I am the opposite actually.....very high adrenaline and feel horrible in the mornings and much more stable at night....I wonder why that is? sometimes I wonder if Cortisol levels could be playing a part.....

[Guest headhunter030]

I am the opposite actually.....very high adrenaline and feel horrible in the mornings and much more stable at night....I wonder why that is? sometimes I wonder if Cortisol levels could be playing a part.....

Spot on with me.

[Mytwogirlsrox]

I oscillate sometimes mornings are good, nights are bad, and vice versa. I definitely pool more in the evening, but HR tends to be slower

[ceindeg]

I take forever to feel awake in the mornings, then around 10pm I feel more awake than I have done all day! That lasts until I go to bed and then the change of position to lying down makes everything horrible again.

[Guest Alex]

Before having the official POTS diagnosis, most of my tachy/chest pain episodes happened at night. It's been a while since I woke up in the middle of the night with a racing heart, but my last holter shows that my heart rate reaches pretty high numbers while I sleep (I had readings in the 100-120's every hour despite being relaxed, asleep, laying down etc) - makes me wonder if this is consistent with POTS?!

Alex

[brethor9]

Alex if it makes you feel better I went through years before diagnosis with the same night time attacks you describe......since starting meds they are not as common at night as they were but the last 2 weeks they have been back full force.....sleep? what's sleep? lol

[Guest Alex]

Thanks Bren,

sleep is ...yeah, a foreign language to me now.

Those pesky night time attacks were horrible, and I'm sorry to hear you're going through them again. Have you found anything to be helpful for you?

Alex

[Friedbrain]

I may have something helpful to contribute! Yes, my problems initially were only at night (over time, as my health deteriorated (thank you stress), symptoms started intruding into my daytime). After getting nocturnal seizures under control with meds, I was left with periodic nights of heart racing, weird autonomic-like seizures or shakes, etc. I read several tips on this board that helped me, one of them being to raise my head up. I'd already found this to be true-feeling like I had to sleep in a chair, so it was reassuring to know that others knew what I was talking about, and that it really did help. Using a couple pillows to raise my upper body up helped, as well.

But what also helped, although I didn't understand why, was to do arm exercises. I have hand weights by my bed, and I would arm pump with them (sometimes over my head; sometimes backwards). Simple as that. I'd get out of bed when my head or heart was racing, do the exercises, then go back to sleep. Just this week, reading up on how exercise affects bp, I read that stationary exercises do not necessarily increase heartrate (like cardio does), but that upper body exercises in particular raise systolic. Which was REALLY interesting to me, since I have a pretty low and hard-to-increase systolic. (IFor example, I have noticed at night that my pulse pressure during bad episodes is sometimes very narrow because my diastolic goes up but my systolic doesn't). So my newest thinking is whether the low systolic is part of the nocturnal problem and that the arm exercises directly help by raising the systolic. So.......try it and let me know!

[Debbie Rose]

Fried- What kind of BP machine do you have?? The one I got at walgrens won't register less than 80/50 it just says EE...I would love to have a record so I can show doctors as I have yet to be believed...Thanks for all the info-Today..Day 4 off Beta I have increased HR in am But at nigh is when it clips to 160-170 and I have the symptoms..Neuro Appt tomorrow!!

[Millerla]

Most potsies I know have the worst problems in the mornings, but I am usually the best when I first wake up and slowly get worse until I go to bed at night.

[Friedbrain]

Debbie Rose,

My bp monitor is a generic one from a grocery store in the south. My dh got it for me and it seems to work fine except, like you, it only goes down to 80s/50 before giving me a reading of "EE". I mark down "EE" and know that it means it's LOW Do more expensive home monitors measure lower?

I used to think that the nighttime exercises had to do with increasing my effort to match my increased heartrate, but now I think maybe my heartrate had increased to counter the low bp; and that maybe the hand weights increase my bp, so my heartrate could decrease (which it does after I'm done exercising). How did your doc visit go?

[Debbie Rose]

Did an experiment on sweets last night and today and MAN oh MAN!! I get tachy to 132 with cake and cookies! My last vice!

[Relax86]

My symptoms were always worse in the morning - would level out in the afternoon and nearly feel normal at night. Low dose hydrocortisone helped me level out my mornings. Symptoms have recently switched to waking up feeling decent, mid day better, night time tachy, R neck tightness, breathing diff, adrenaline rush post dinner and t/o the night including while I sleep. Current dosing of cortisone is 5mg around 8a and 5 at 8p. Not sure if I should play around with the times. My doc's give me no advise - just say do what seems to work. Recently went off midodrine as morning BP not so low. Have no new plan. May re-try fludro....who knows.

[Aeris]

I'm a bit of both. Very first thing in the morning is rough. I'm usually stiff and in a lot of pain and parched. But usually within 30 minutes to an hour I feel fine. The next 3 to 4 hours are my best most productive and least symptomatic time. Then fatigue sets in and pain and symptoms start setting in until by 9 or 10 pm I'm almost like I have the flu complete with slightly elevated temperature (99.3 - 99.7). My neuropathy symptoms are at their most extreme. Still in the process of being diagnosed. Not sure exactly what is going on with me. This all started October 1st 2023. Been to a cardiologist and full battery of test to determine that my heart is healthy other than a very minor leaky mitral valve and unexplained tachycardia. I've had 2 MRI and lumbar puncture and a bunch of blood test. So far no answers. But since spring the severity of my symptoms has gotten better but the number of symptoms and number of areas affected has increased. I don't know what to think.

[Sarah Tee]

@Aeris, welcome to the forum.

You mention waking up feeling parched – could be worth keeping Sjögren’s syndrome in mind. Autonomic specialists do usually ask about it, and may even be more switched on to it than your average rheumatologist.

I think everyone here can understand the uncertainty, tests, and changing symptoms.

[bunny]

I have a very difficult time in the morning, especially waking up.  My vital signs when I'm sleeping are usually in the tank.  BP, pulse, and temperature all low.  SpO2 often low.  I'm practically comatose at those times.  You could physically pick me up and carry me around and I'm not going to notice.  

This has been going on for decades with me. Back when I was in the hospital as a teenager, they'd increase the dosage rate on my feeding tube about 30 minutes before they wanted me to sleep and I'd pass out no matter how hard I tried to stay awake and stay out until an hour or two after they backed it off.   It was weird basically having a light switch others could turn on & off.  

If I need to be awakened before my body thinks its time, someone rubbing my arm or leg and talking to me will cause my vitals to go up and then I'll start to wake up.   Even then, I'm still a bit shaky and vision's out-of-whack until I've been up for about 30 minutes.   Last year we were at a hotel when the fire alarm went off.  I was fast asleep.  My fiancé shook me to wake me up, my adrenaline kicked in, and we made it outside...where after a few minutes I collapsed.  Adrenaline had run its course and my BP/pulse were back in the tank again. 

The amount of energy digestion uses in my body is a problem, especially with little energy my body has to go around.   I always skip breakfast and either skip lunch or have a light lunch because once my body starts digesting things, my BP goes low, pulse elevates.   If I eat breakfast when I first wake up, I pass out within 30 minutes of eating about 75% of the time.  I usually make dinner my big meal because it'll help me sleep better, although it doesn't seem to hit me as hard as earlier in the day.