POTS syndrome patients have orthostatic intolerance. This basically means there is difficulty remaining in a standing position due to development of symptoms such as dizziness, almost passing out, and classically a dramatic increase in heart rate. Other complaints include poor exercise tolerance, weakness, mental fog and fatigue. Sleep disturbances have also been well characterized in P.O.T.S syndrome. Several studies have looked in to this, and we will briefly review them here.
POTS syndrome patients have described poor sleeping at night, waking up repeatedly at night, and sweating at night. As far back as 1921, it was shown in a study of soldiers, that those with POTS like symptoms of orthostatic intolerance also had sleep disturbances. One study showed that around 30% of POTS syndrome patients have sleep disturbances. Another study used questionnaire to investigate sleep patterns among POTS syndrome patients. POTS patients were found to have more sleep disturbances and higher levels of daytime sleepiness combined with fatigue as compared to healthy counterparts. In a study of POTS patients that used polysomnography, it was noted that there was diminished sleep quality, excessive daytime sleepiness, and decreased proportion of stage 2 sleep, which usually takes up around 50% of the sleeping time. These findings are similar to patients with insomnia. POTS syndrome patients were also noted to have increased variability of heart rate during different stages of sleep.
Taken together, these studies highlight that POTS syndrome patients are much more likely than others to experience sleep disturbances. In turn these sleep disturbances are associated with decrease in quality of life and form an important part of symptoms experiences by POTS syndrome patients.
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How can I improve my sleep with POTS?
Melatonin helps me a lot. I take 2 or 3 .5mcg tablets and I sleep much better. Sometimes I still do wake up but definitely not as often.
I find that after having an energy drink or coffee my symptoms are much better. Could this be to do with Caffeine?
Hi,
I am just recently diagnosed but have found the same to be true about coffee, long before I knew what I was dealing with.
I used to have coffee in the afternoon and it helped my general malaise. After starting my research on living with POTS, I gave up coffee for a while. I felt sick last night and could not sleep, got up and had a small cuppa, went back to bed and slept well.
There is a lot of conflicting information about caffeine (and everything on the internet) Most everything I have read has been very helpful, but we are all so different, we need to be mindful to what our actual experience to it is.
I am reclaiming coffee ;^) !
Hi,
I have a rare subtype called hyperadrenergic state pots. Not sure of your type, but this is what was explained to me:
Caffeine can help by bringing up blood pressure. The whole thing with pots is that the body freaks out from thinking there’s loss of blood volume. The ways that pots patients can try and trick the body out of that response is to increase fluid intake and bring up blood pressure. Common ways are using Florinef and Midodrine, a high sodium diet, drinking lots of water, beta blockers (in pots they bring up bp by decreasing heart rate), and Clonidine. The reason why there’s conflicting reports about caffeine is because of its tendency to contribute to dehydration. Hope that helps you!
Thank you
Coffee also causes your blood vessels to constrict, thereby increasing your blood pressure. My understanding of POTS, or at least one type of POTS (whatever type my doctor thinks I have) is that your BP may be really decreased by laying down for awhile. Then when your body realizes its BP is low it sends out epinephrine to constrict your vessels. But it seems like this can also wake you up or cause less deep sleep. So maybe by drinking coffee you increase your BP without your body having to produce the epinephrine? That would probably help you sleep better. Maybe that’s why coffee helps you. But since it also can make you jittery and alert it might not help everyone the same way.
My girlfriend has been diagnosed with a rare syndrome called P.O.T.S (Positional orthostatic tachycardia syndrome) and is a big part of Auburn NY community. She has been referred to the Mayo clinic in Cleveland however we need to raise $5000 just to set up an appointment. Through out this she has lost her appartment, car, job and a normal way of living.
From Danielle Dutcher
So everyone knows my story and in case you don’t here’s what’s going on for the past 4 years I’ve been passing out and doctors haven’t been able to find out why. So on October 6th 2017 I had a loop recorder in planted which is an internal EKG. 6 minutes after it was put in during my discharge vitals I passed out again this time thank God my friend who was the nurse Beth O’Hara was the one who saved me I was the rapid response at Auburn Memorial Hospital at which my new loop recorder caught my six second pause in my heart. I was done admitted and had to stay for 4 days in Auburn then 4 days in Syracuse. Where they dianoisngd me with P.O.T.S. positional orthastatic tacardic systoms ever since then I can go about 2weeks before I need go to ER and get fluids they keep me over night .long story short it’s getting worse… so I was recommended recently to the Cleveland Clinic in Ohio. In order for me to go I need $5,000 the day before my appointment. The hard part is I am no longer allowed to work I have no money in the process of talking to a lawyer about being denied for disability I’m not getting unemployment. And my boyfriend Jeremy Thorpe is busting his bottom to support us and our kids. We need help and in thinking between a go fund me or flat out benefit to get me to Cleveland this hospital will help me and my quality of life would dramically improve. Thank you everyone for your support prayers and help I appreciate all of you my hands are tired and I dont know what to do.💕
https://www.gofundme.com/help-with-medical-bill039s
Jeremy A Thorpe
I had a sleep study done:
Sleep efficiency-36.8% (85% and higher is normal)
I had 25 awakening (I slept 184 min. out of 502 min.total time in bed monitored): 6 associated with respiratory events, 14 -spontaneous
REM sleep -29 min.
N1 stage – 28.7% (usually 5%)
N2-49.9% (50% normal)
N3 -5.7% (deep sleep 5-15% normal)
REM -15.7% (normal 15-25%)
Highest HR during sleep- 132 (under 100 is normal)
and 149 during the entire recording
Conclusion: NO sleep apnea, NOTHING ELSE THEY CAN DO ABOUT IT.