Tachycardia When Sleeping

[forevertired]

I recently had a sleep study that showed that when I sleep I have constant tachycardia. Has anyone else had a sleep study? Did your sleep study or holter monitor show a higher than normal heart rate when sleping? Is this normal for people with POTS?

[AllAboutPeace]

I haven't had a sleep study done, but my holter and telemetry when I was in the hospital both showed that I was tachy when I'm sleeping. Sometimes I (or my husband) have woken up to find the bed vibrating and then discover that it's actually me that's causing it. At those times my tachy has been quite high.

Have you ever woken with it or noticed it being tachy?

[sue1234]

I wake up with it every night, and have for years. I don't check to see what the rate is, but when I feel my heart racing and feeling like it's pounding, I know it is above my normal. It lasts for a couple of hours, and I am always hot along with it. Then for some reason it settles down and I cool back down. Then, I am finally able to go back to sleep.

My memory is awful, but it seems when I had my holter monitor a couple of years ago, it had a night low of around 60 and a night high of around 120.

[MomtoGiuliana]

Interesting question that I have wondered about recently. So your hr is over 100 bpm when sleeping? When I had a 24-hr holter monitor (9 yrs ago!) my hr went into the 50's when I slept. I do wonder if that is still the case. I go to sleep and wake up with my hr in the 80s typically, but can be higher. It does seem that my hr goes up after lying down for awhile, eg from 70's to 80's, or higher. This has always seemed counter-intuitive and not consistent with POTS.

[potsyturvy]

Mine stayed in the high 90's low 100's during my sleep study and holter monitor. My dr diagnosed me with Inappropriate Sinus Tachycardia because of that and put me on a Beta Blocker.

[bellgirl]

Yes, unfortunately this is normal...you may need something to help you sleep, and decrease your heart rate. Do you have a good autonomic disorders doctor? I have sleep apnea in addition to dysautonomia, and take Klonopin and sometimes ambien, so I can sleep, and I am on a beta blocker, bystolic for my tachycardia. Hope you find what works for you. It's terrible when you can't sleep; believe me, I know

[POTLUCK]

It is easy to see why your name is forevertired if HR is running over 100 when sleeping ( or trying ) I am new to the forum. It is nice to meet you. I hope they have some suggestions. My HR runs 85-105 lying off meds but I am back on whopping dose of Inderal LA ( 80mg AM & 60mg PM ) It is supposed to be once daily but it lowers my HR a few hours after I take it and then HR slowly rises back till 110-120 standing before PM dose which lowers it again so I request BID. I have trouble sleeping, especially off Propranolol and have tried several things. I asked the cardio who treats POTS what he recommends but he said see the sleep team. Obviously that is what you have done. Klonopin .75 seems to be helping. Benadryl 25 seemed to slow HR and make me sleep but not feel good when awake. Ambien 5-10 works for me for short time, not alway full night. I do not like being on these meds and hope that getting better control of the Hyperadrenergic POTS will help with the sleep but in the meantime I am taking the Klonopin.

[L4UR3N]

Wow, so sorry to hear that . As PotsyTurvy already mentioned, a high resting heart rate in addition to POTS like symptoms could indicate Inappropriate Sinus Tachycardia (which is another form of dysautonomia). IST seems to be even less common than POTS. My sister actually suffers from this and has had good success with a very old beta blocker that they hardly use anymore (I forget the name of it, but I will find out).

I have the hyperadrengergic form of POTS. There are a few different theories about IST and HyperPOTS. Some doctors believe that it is actually different manifestations of the same disorder, while other doctors believe that they are different, but call them "sisters" because they have many similarities.

The differences between my sister an I are :

• I have a very low heart rate when sleeping, while she has a high one.
  
• My heart rate increases dramatically every time I stand up, while hers seems to remain high all the time.
  
• She does not seem to have some of the other symptoms that I do, such as Raynauds, vertigo, venous stasis, and she has never passed out.
  
• She does not seem to need to drink / pee as much as I do
  
• She is able to tolerate beta blockers (I am not) and she has definitely been helped by them!!
  

The similarities are:

• Both of our heart rates increase inappropriately to what we are doing (for example going up the stairs).
  
• We both have IBS, EDS, endometriosis, dizziness, chest pain, and fatigue.
  
• We both respond well to eating more salt.
  
• We both had an acute on chronic onset -- mild symptoms all of our lives, but dramatically increased in our 20's.
  

Again, I am just going off of a personal experience, and really cant give you much more information than that. I am still waiting to meet someone else with POTS and IST in the same family . Obviously there is a genetic component to it.... not sure exactly WHAT though.

I hope this helps in some way....

***Added later: One interesting thing is that when I was under general anesthesia (so basically "asleep") I was tachycardic the entire time, while my sisters heart rate actually came down. Kind of the opposite to what we normally do!

[julieph85]

Hi, this also happens to me. It was captured on a two week holter monitor. Basically what happens is once I first fall asleep it goes down into the 60's like it is supposed to but about 30 minutes in it rises suddenly usually into the 130's to 140's and it will stay that way for some time. Then it will gradually go down and then shoot back up again. This will happen over and over again all night long. It used to wake me up every night with that first initial rise and sometimes it would be as high as 180 and last for up to 30 minutes like that. I think my body got use to the constant tachy all night because now I don't usually wake up from it. However like Sue said, I don't even check my pulse anymore when it happens but I can tell its high because I can feel my pulse pounding in my chest. It is very disconcerting to know my pulse is racing all night while I'm sleeping, but I've just resigned myself to the idea that there isn't anything I can do about it because I can't take beta blockers. Also my cardio said it is a safe rhythm so it won't kill me my pots doc told me this constant sleeping tachy is likely the result of my BP dropping too low during sleep so my body is trying to acclimate by causing the tachy. He said the sudden surges are also likely pre syncope which is why my body wakes me up when they happen.

[forevertired]

I haven't had a sleep study done, but my holter and telemetry when I was in the hospital both showed that I was tachy when I'm sleeping. Sometimes I (or my husband) have woken up to find the bed vibrating and then discover that it's actually me that's causing it. At those times my tachy has been quite high.

Have you ever woken with it or noticed it being tachy?

Sometimes it is hard for me to fall asleep because of it, as sometimes I get very tachy when I lay down. I wake up a lot so it is possible that is a factor of what is waking me up although I don't know for sure.

[forevertired]

Wow, so sorry to hear that . As PotsyTurvy already mentioned, a high resting heart rate in addition to POTS like symptoms could indicate Inappropriate Sinus Tachycardia (which is another form of dysautonomia). IST seems to be even less common than POTS. My sister actually suffers from this and has had good success with a very old beta blocker that they hardly use anymore (I forget the name of it, but I will find out).

I have the hyperadrengergic form of POTS. There are a few different theories about IST and HyperPOTS. Some doctors believe that it is actually different manifestations of the same disorder, while other doctors believe that they are different, but call them "sisters" because they have many similarities.

The differences between my sister an I are :

• I have a very low heart rate when sleeping, while she has a high one.
  
• My heart rate increases dramatically every time I stand up, while hers seems to remain high all the time.
  
• She does not seem to have some of the other symptoms that I do, such as Raynauds, vertigo, venous stasis, and she has never passed out.
  
• She does not seem to need to drink / pee as much as I do
  
• She is able to tolerate beta blockers (I am not) and she has definitely been helped by them!!
  

The similarities are:

• Both of our heart rates increase inappropriately to what we are doing (for example going up the stairs).
  
• We both have IBS, EDS, endometriosis, dizziness, chest pain, and fatigue.
  
• We both respond well to eating more salt.
  
• We both had an acute on chronic onset -- mild symptoms all of our lives, but dramatically increased in our 20's.
  

Again, I am just going off of a personal experience, and really cant give you much more information than that. I am still waiting to meet someone else with POTS and IST in the same family . Obviously there is a genetic component to it.... not sure exactly WHAT though.

I hope this helps in some way....

***Added later: One interesting thing is that when I was under general anesthesia (so basically "asleep") I was tachycardic the entire time, while my sisters heart rate actually came down. Kind of the opposite to what we normally do!

Thanks, that helps. I think I will ask my cardiologist if it is possible I had IST rather than POTS, as IST sounds more like me, especially since my main symptoms are chest pain, shortness of breath, and gastrointestinal problems. I have never passed out. I don't know if I can still tolerate beta blockers but I used to take them all the time when I was younger as they are used to treat essential tremor.

[forevertired]

Yes, unfortunately this is normal...you may need something to help you sleep, and decrease your heart rate. Do you have a good autonomic disorders doctor? I have sleep apnea in addition to dysautonomia, and take Klonopin and sometimes ambien, so I can sleep, and I am on a beta blocker, bystolic for my tachycardia. Hope you find what works for you. It's terrible when you can't sleep; believe me, I know

Unfortunately, I don't have a good autonomic disorders doctor. I have been trying to find one in Washington state. Heard of any good ones? My doctor diagnosed me with POTs but it is obvious he does not know much about it or how to treat it. He also said he would not help me with my sleep. You are fortunate you found a doctor willing to help you with that.

[AllAboutPeace]

I agree that it would be a good idea for you to be tested for IST.

I am waiting to see an electrophysiologist so they can rule that out for me as well (although I'm sure mine is not IST). My hr isn't tachy when I lay down though, which is quite different from yours. Mine just goes tachy through the night and I was told it was likely the same cause that Julie mentioned - already low blood pressure dropping further during sleep.

I hope you find a doc who is helpful! I have none that know anything about POTS either and truthfully, at times I just want someone to look at me with an "I-totally-get-it" expression as opposed to the "blank stare"; the "you're feeling what??"; or the "maybe-you-should-join-the-traveling-circus" (perhaps start a 'guess her blood pressure' act or 'watch the incoherent lady's feet turn purple').

[forevertired]

AllAboutPeace,

What tests should I ask for so that I can see if I have IST or not? I had the tilt table test and that showed that I had POTS (as my heart rate raised from the 90s to 140s within a few minutes and I had the sweat test that showed that I don't sweat excessively. I also had the catcholomine blood test.

Thanks.

[AllAboutPeace]

I don't actually know what they do to determine that (sorry) - maybe someone else can answer that question...

I know that my internist spoke with the electrophysiologist who said that she wants to rule out IST (probably based on my nighttime tachy), but he didn't say how she will do it. I'm curious now too.

[forevertired]

AllAboutPeace,

I am interested to hear how your electrophysiologist will rule IST out.

[bellgirl]

Yes, unfortunately this is normal...you may need something to help you sleep, and decrease your heart rate. Do you have a good autonomic disorders doctor? I have sleep apnea in addition to dysautonomia, and take Klonopin and sometimes ambien, so I can sleep, and I am on a beta blocker, bystolic for my tachycardia. Hope you find what works for you. It's terrible when you can't sleep; believe me, I know

Unfortunately, I don't have a good autonomic disorders doctor. I have been trying to find one in Washington state. Heard of any good ones? My doctor diagnosed me with POTs but it is obvious he does not know much about it or how to treat it. He also said he would not help me with my sleep. You are fortunate you found a doctor willing to help you with that.

Hi Forevertired...I live in Alabama, so I really don't know about doctor's up there, but I would venture to say you might want to find yourself a doctor, who maybe would want to order a sleep study, a good clinic that tests for EEG, your brain, EKG, your heart, O2 concentration, your lungs, EMG, muscle movement, etc. Not all sleep clinics do all these tests You might want to have a separate doctor for this, too! I sleep with a Cpap machine (Continuous Positive Airway Pressure). Unfortunately, there isn't one doctor for all our problems. If you find one who knows about autonomic disorders, they will send you to other doctor's that you need. Have you had a holter monitor, echocardiogram, stress test, EKG or tilt table test? If you ask you doctor, will he set up these tests for you? My internist is good about doing things that I request, but I'm a nurse, too, so I'm sure that has something to do with it! There used to be doctors on this site, too, so you may want to check the state of Washington, too.

Edited March 19, 2012 by corina
medical advice

[L4UR3N]

http://www.potsuk.org/attachments/File/Grubb%202006.pdf

Here is a link to Dr. Grubb's article describing the differences between IST and Hyper POTS.

[L4UR3N]

BTW the beta blocker that has helped my sister so much is called Pindolol. Its a very old BB with some interesting actions (one affecting a serotonin receptor which I am convinced has something to do with all of this).

[forevertired]

Kimbellgirl,

I have had an EKG, MRI's of the brain and spine, CAT scans of the brain and lungs, EEG, Echocardiogram, pulmonary function tests, EMG, Sleep study (which showed my sleeping hr to be at or above 100), holter monitor, Tilt Table Test, and lots of blood tests. The holter monitor showed mild sinus tachycardia. The holter monitor said that my resting hr is in the 90s, which doesn't make sense to me as I have had my hr measured in the 60s when sitting. Any idea as to how my hr can be lower when sitting than when laying down? The cardiologist said because of that test I only have a mild form of POTS. The tilt table test showed that I have POTS, as my hr went from the 80s to the 140s, upon standing. . Thanks for the suggestions of tests I should have done.

Unfortunately the Physicians list on this site doesn't show any for WA. I called the UW neurology clinic (as they are the ones who did my tilt table test), and they say they have several neurologists on staff that treat autonomic nervous system disorders. I think I will try to get a referral to one of those doctors. Hopefully they are better than my current doctors. I have dropped my cardiologist, as everytime I ask him any questions, his response to my question is to say you don't have a severe form of POTS, rather than answer my question. When I try to get treatment from him, because POTS is interfering with my work, he says that I don't have a severe form of POTS, so therefore I don't need treatment; not to mention he dismisses all my symptoms and says they are not related to POTS (like my chest pain and breathing issues). Which is causing me to get stressed, because the reason I went to him was to get help, so that I can be more functional. I also stopped seeing the doctor that diagnosed me with POTS as it is obvious he doesn't know how to treat POTS, as he won't even offer a form of treatment other than florinef. Florinef didn't work for me. That doctor also suggested I find someone else to treat me. I just wish it was easier to find a good doctor.

Rissy2D,

Thanks for the link and the name of the beta blocker.

[AllAboutPeace]

Forevertired,

I'm glad you were able to locate some neurologists that deal with ANS disorders. It sounds like you have had a lot of good testing done, so hopefully you will get someone who is willing to take this on with you.

Thats horrible that the cardiologist was soo dismissive like that. POTS is soo much more than a heart rate fluctuation...

I hope you are able to get a referral soon.

[bellgirl]

A Neurologist with experience with autonomic dysfunction sounds great. This disorder is an Autonomic Nervous System Disorder...so he/she should be helpful, however, I would find another cardiologist, as well, since they would be the ones to order Beta Blockers, unless you have a good internist. Chest pain and sleep issues do go along with this disorder, btw. I can attest to that!! It will make all the difference in your quality of life to get your heart rate regulated, and better sleep !! Praying that you find the right doctors...

Edited March 19, 2012 by corina
medical advice

[POTLUCK]

I woke up at 5AM and could not sleep so took a second 0.5 Klonopin ( 1mg total which I prefer to avoid but did not get to sleep till midnight ) , put on my sports watch for a HR monitor and went back to sleep ( An hour later ) Anyways my HR ( on Inderal Long Acting 80AM and 60PM ) was averaging ~85 sleeping but did go into the 100's for several periods. ( You can see it on the computer screen later. )

I looked at Dr. Grubb's article above ( thank you Rissy2D ) but I do not understand how you know if you have IST. Off meds my HR must go into the 100's sleeping even more often ( as 140mg is a lot of Propranolol ) and I know lying awake off meds it goes in and out of the 100's off medication, but it goes up on tilt ( or standing ) On my test it went above 140 but oscillated repeatedly ( going to 156 and down to 80 ) per the nurse.

Your sister has the IST diagnosis? Does her HR rise from lying to standing?

[forevertired]

Rissy2D,

I am also curious about the question Potluck posed. Does your sister's hr rise from lying to standing?

Thanks.

[L4UR3N]

Hi there! Sorry for the late reply, work has my head spinning in a million different directions lol

My sister does not have as large of an increase in heart rate as I do when she stands (although I have heard of some IST patients who do). The main difference between us is that her resting heart rate is high, and mine is not. Her resting heart rate is consistantly above 100 and rarely ever dips below that (off the beta blockers). My resting heart rate is typically in the 40's give or take 10bpm.

As mentioned earlier, some researchers believe that Hyper POTS and IST are just different manifestations of the same disorder, while others believe they are two separate disorders. I personally believe they are related, but separate disorders, only because IST patients often benefit from an ablation, while such treatment often makes POTS patients worse. Many IST patients are also helped by beta blockers, which have a variable effect in POTS patients. These responses to treatment indicate to me a different causative mechanism of action in each disorder.