Debbie Rose Posted July 31, 2012 Report Share Posted July 31, 2012 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? Quote Link to comment Share on other sites More sharing options...
ddschool Posted July 31, 2012 Report Share Posted July 31, 2012 Yes, I do. Mornings I feel the best, then about 1pm, I start tapering off w/ energy, getting worse as evening goes on. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 31, 2012 Report Share Posted July 31, 2012 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..... Quote Link to comment Share on other sites More sharing options...
Guest headhunter030 Posted August 1, 2012 Report Share Posted August 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted August 1, 2012 Report Share Posted August 1, 2012 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 Quote Link to comment Share on other sites More sharing options...
ceindeg Posted August 1, 2012 Report Share Posted August 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 2, 2012 Report Share Posted August 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
brethor9 Posted August 2, 2012 Report Share Posted August 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 2, 2012 Report Share Posted August 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted August 2, 2012 Report Share Posted August 2, 2012 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! Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted August 2, 2012 Author Report Share Posted August 2, 2012 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!! Quote Link to comment Share on other sites More sharing options...
Millerla Posted August 3, 2012 Report Share Posted August 3, 2012 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. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted August 6, 2012 Report Share Posted August 6, 2012 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? Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted August 6, 2012 Author Report Share Posted August 6, 2012 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! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 6, 2012 Report Share Posted August 6, 2012 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. Quote Link to comment Share on other sites More sharing options...
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