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.
To find experts in POTS around the United States check out XpertDox.
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.
Try White Noise machines and weighted blankets!
Melatonin helped me for awhile but now gives me worse sleep ?
i am unable to take melatonin ( it puts me in an agitated state, does have an effect, and doctor recommended against it) do you have any other recommendations?
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
Caffeine is an addictive drug and therefore the brain will suffer ‘withdrawal’ effects.
That is why you could not sleep until you satisfied the craving.
The way to cut out caffeine is by a gradual reduction…same as with any other addictive drug.
I will literally drink coffee just to get some sleep…. They coffee is bad if you have sleep problems, but I drink cause it helps me sleep most times.
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.
Spot on reply. That is exactly what the caffeine does constricts you peripheral blood vessels to pump more blood back to your heart.
Diagnosed with Orthostatic Hypertension. Is this same as POTS? Also do I ne a Cardiac Catheterization?
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
She has Dysautonomia. There are groups that can help you find Dysautonomia specialists. You Do NOT need to go to the Cleveland clinic. I know specialists are rare. But they are out there.
>Dr. Svetlana Blitshteyn
Williamsville, NY
>Dr. Julian Stewart
Hawthorne, NY
>Dr. James Riviella
New York, NY
>Dr. Louis Weimer
New York, NY
>Dr. Norman Latov
New York, NY
>Dr. Felicia Axelrod
New York NY
>Dr. Mark Gudesblatt
Patchogue, NY
Just to name a few.
Join a Dysautonomia Facebook group in your area and they will be able to help you find more in your area.
For financial help click “patients” on this website.
http://www.dysautonomiainternational.org
Good luck
Hello, does anyone know where there’s good POTS specialists in Miami Florida, or close to Miami? I’ve been struggling to find one and my symptoms are getting worse.
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.
Taking a small amount of clonazepam may help the HR
Does anyone know of any physicians in the LA area? I have had this for over 20 years and I can barely function anymore. Really could use some suggestions. I have to bring a little chair with me everywhere I go because I can’t stand for more then a couple minutes anymore. Please if anyone knows of any Doctors in the LA area I would really appreciate it.
A couple of questions here, but I’ll keep it short and simple:
1. Does POTS/Orthostatic Hypertension stunt the growth of height in teens and adolescents?
2. Does anyone have personal experience with POTS developing throughout teen years, and when did things start getting better or symptms disappear for you.
Does POTS/Orthostatic Hypertension stunt the growth in height of adolescents and teens?
Thank you for that. I was just recently diagnosed with dysautonomia, and I’m not finding much info on it. For a year now, not understanding why I felt better with reg coffee (but heart rate scared me) so I would go back and forth with decaf, which made working (retail mgr) almost impossible. Right now for me, sleep is horrible. I’m averaging waking up around 15x a night. This certainly excaberting my work life and personal life. Melatonin does absolutely nothing for me. Doctors will not prescribe benzos for fear of addiction. Trazadone had me passing out day & night. Vistaril doesn’t help very much… What are we/I suppose to do?
I don’t see my specialist until June.
I currently live in Colorado with my husband.
I was diagnosed with Dysautonomia in October of 2023.I am currently taking Alprazolam to try and get some sleep at night.My cardiologist prescribed beta blockers, calcium channel blockers and now IF blockers.
I experience horrible side effects from everything I try. I was terminated from my workplace for “exhausting my leave”, I was put on permanent disability by my PCP,I no longer have a vehicle,no income and my husband is busting his ass for a horrible company who is very racial. He is completely miserable, I am completely miserable and need help. There is no specialist out here in Colorado who I can see. There is one, but she doesn’t take insurance and her fee just for walking in the door? Ridiculous!
I need help. I don’t know how much longer I can live this way. I am deteriorating every single day and feel there is nothing else I can do for myself. I honestly just want to give up.