Exhausted because of nightly tachycardia - anyone else?

[Pcola]

I am exhausted.  I was diagnosed with POTS in 2002.  I have been unable to tolerate most of the usual meds, but have been able to take Clonazepam at night for a decent night's rest until about three years ago.  Fortunately, I have been able to control my POTS with adapting my postural position to alleviate my symptoms along with drinking a lot of water every day and avoiding getting over heated.  About three years ago I began waking up approximately 2 hours after falling asleep with tachycardia of 100-120 bpm.  Sometimes my blood pressure would be high with triple digits for systolic and diastolic.  Other times it would be very low.  I use two different bp machines so I know the readings are accurate.  On the nights this occurs I sleep very little.  The only thing that helps is to sit straight up in bed and drink a couple of bottles of water.  As my bp and hr even out, I will drift off to sleep - still sitting straight up -  only to awake two hours later and have to repeat it all over again.  This happens approximately 4 times a night.  I go to bed now with my bp cuff and 4-6 bottles of water every night.  The tachycardia leaves me feeling like I have run a marathon the next day not to mention the effects of the loss of REM sleep.  I have been told that Clonazepam will lower your blood pressure so I have reduced my dosage down to 50% of what I was taking with no change in my symptoms.  I plan to continue reducing my dosage until I no longer take it.   I have mitral valve and tricuspid regurgitation along with PVC's.  I have sought help from my medical providers and was prescribed a beta-blocker which as a dysautonomia patient is difficult to take because of the unpredictability of my POTS symptoms.  Beta-blockers can make my blood pressure too low.  I continue to seek help to resolve my issues with nightly tachycardia and high/low (inconsistent) bp.  I have run into a wall because I have the diagnosis of Dysautonomia/POTS and it has become my doctor's "go to" explanation/diagnosis for any bp/hr issues I have.  I cannot even get a referral to a cardiologist because I have Dysautonomia and cannot get my doctors to look beyond that.  I would love to look forward to going to bed at night the way I used to instead of dreading the approach of bed time as I do now.  The other symptoms I have noticed is that when I wake up with tachycardia and bp issues is slightly swollen eyes and lips.  I am also having extremely violent nightmares with each occurrence.  I thought at first that my nightmares caused the tachycardia, but I have come to realize that the tachycardia is driving my nightmares.  The higher the tachycardia the worse my nightmare is.  Its almost as if the nightmares are a protection mechanism to cause me to wake up and get the situation under control.  My doctors have also suggested that I am having nightly panic attacks, but I feel that is unlikely.  Certainly not 4 panic attacks a night anyway.  It also seems that the fact that I take Clonazepam each night would lower the chance that I am having panic attacks.  As I write this, I can feel my blood pressure rising and the pressure growing in my chest.  I just verified it with a quick bp check.  Last weekend I decided to sweep the floor which is not an unusual activity for me.  I usually don't have a problem with it.  However this time within a minute or so I could tell my hr was too high.  When I checked my bp it was fine, but my hr was 154.  My resting hr is normally 60 as I was a long distance runner for over 30 years.  My dilemma is that being intimately familiar with dysautonomia/POTS for many years I always thought we were symptomatic only when we were standing or sitting for periods of time.  Sleeping and exercising were supposed to be good things.  So much is not making sense, and I am confused.  Does anyone else with Dysautonomia have problems when they lay down?  Does sleep bring on your symptoms?  I apologize or the length of this post, but appreciate any information anyone may have.

[StayAtHomeMom]

I would definitely try the beta blocker. I take metoprolol and it helps a lot of what you describe. There are many types of beta blockers and low dosages don't mess with your blood pressure much. I take 25mg and it lowers my BP by about 10/5 points. I have normal BP so have it 110/75 is fine. It definitely helps the tachycardia and heart palpitations. I can most certainly tell I am late on a dose because I can feel it. When I am on it I feel more normal. 

Having a disease or disorder that cause so many things makes it hard if you develop something else. You can keep trying to get the doctors to dig more but honestly most seem to only care about alleviating the symptoms then finding the cause. 

Good luck and I hope you feel better soon. 

[Pcola]

I was unable to take metoprolol previously, but that was many years ago.  If it works for you then perhaps it is time to try that one again.  My blood pressure at the low end is about 90/54 and at the high end 139/113 (just during my nightly tachycardia episodes.)  I have also noticed that steroids that used to make me feel good now make me feel much worse and antibiotics that worked now make me sicker.  It seems my entire system is changing.  

Thank you for your reply and information!

[Pistol]

@Sondra - I respond well to carvelidol (BB) and it does not affect my - at times low - BP. BP goes either way but it does not drop too low on it. Also - if your night time episodes cause your HR and BP to increase then I would take the BB at night ( I take it twice a day). Many people benefit from clonidine for these attacks ( although I did not tolerate that but many people do ). Maybe discuss these meds with your cardiologist? 

[Pcola]

@Pistol - I just received a call from a local cardiologist office and now have an appointment for Monday.  They said my referral was for Dysautonomia and "sick sinus syndrome."  This is a new doctor so I am not sure if he believes in Dysautonomia.  I am thankful though that at least there is hope that someone will listen and try to help.  If given the opportunity I will mention carvelidol.  I took a quick look at it, and it may not work for me as I have asthma and it is contraindicated for asthmatics.  I am glad that you have found something that works for you.  I have taken clonidine in the past, but it does tend to lower my blood pressure quite a bit.  

Thank you for your response and the information on the medications.  Hopefully Monday's visit will be productive.

 

[StayAtHomeMom]

2 hours ago, Pcola said:

@Pistol - I just received a call from a local cardiologist office and now have an appointment for Monday.  They said my referral was for Dysautonomia and "sick sinus syndrome."  This is a new doctor so I am not sure if he believes in Dysautonomia.  I am thankful though that at least there is hope that someone will listen and try to help.  If given the opportunity I will mention carvelidol.  I took a quick look at it, and it may not work for me as I have asthma and it is contraindicated for asthmatics.  I am glad that you have found something that works for you.  I have taken clonidine in the past, but it does tend to lower my blood pressure quite a bit.  

Thank you for your response and the information on the medications.  Hopefully Monday's visit will be productive.

 

If you have asthma don't let them put you on propranolol. They tried that on me first and it made my breathing issue worse. (It is my main symptom and I am not asthmatic) next was a calcium channel blocker that helped a bit but my metoprolol was my saving grace. I also take midodrine during the day. It helps my non heart related symptoms. A lot of people don't like it because of the tingling sensation. I have been taking it for a year and still get the tingling for about an hour in the middle of my dosing (it lasts 5 hours) but I think it is worth the tingling to get some relief from my symptoms. It can only be taken during the day and you can't lay down with it or it ups your BP to dangerous levels. It is a nice boost to help me during the day though. 

If I remember right a lot of people with dysautonomias have changes in tolerances to meds. Good luck at your appt on Monday and I hope you got a good cardiologist. My first was an idiot but my second saved my life. 

[yogini]

It might be helpful to take 2 mediations together - for example something to increase your BP in conjunction with a beta blocker.  Also have you considered a SSRI?

[RecipeForDisaster]

Hope I can help here-I have had similar symptoms and inability to sleep due to pounding/tachycardia is on of my worst symptoms. I have bad asthma AND pretty bad hypotension, never hypertension anymore although I had it 20 years ago. When I go to bed, my BP is usually in the high 70s or low 80s.

 

I was very afraid of metoprolol but it has made a big difference in my ability to sleep. It takes the edge off the pounding and lowers the rate somewhat. My cardiologists say it's unlikely to lower BP at all at low doses (I can take up to 50mg per day but usually 25mg). You could take a non long acting version to try it out, because it would leave your system quickly. I take the 24 hour extended release which doesn't even last half as long for me, but it's usually enough. I can deal with the pounding and tachycardia much better when I'm not also trying to sleep. When I have to be off this drug for a test or something, I really don't sleep that night.

 

I did hourly BP checks with and without each drug I've been prescribed. I found absolutely no difference with or without metoprolol, thankfully. It made no sense to take a "BP lowering" drug when I am hypotensive, but apparently it is not a good antihypertensive, I'm told. At least not at these doses. It also never affected my breathing. We picked this one for the selectivity-there are only a few that are this selective and less likely to affect breathing. Good luck!

[Pcola]

@StayAtHomeMom Does midodrine cause you to swell?  I tried that several years ago, and it seems that I remember it making retain water to the point of being uncomfortable.  I am a little concerned about the cardiologist that I am supposed to see tomorrow.    I always make it a point to check new doctors out (licensing, credentials, specialties, certifications,  claims and length of licensing), and I can't find anything that shows he was ever licensed as a cardiologist.  His specialty (according to all of the licensing boards is Internal Medicine.)  He is located on the same floor as the cardiology department (thats a good sign), but they got me in with one day's notice which is unheard of with every other cardiologist I have ever tried to get an appointment with.  I am hoping for the best.  

Thank you for your reply and the information.  Fingers crossed for my appointment tomorrow.

[Pcola]

@yogini  Before my Dysautonomia specialist retired due to his Dysautonomia, he tried me on several SSRI's.  He prescribed SSRI's,  Adderall and Midodrine to other patients, but I could not tolerate any of them.  I am definitely open to taking a bp raising medication along with a beta blocker.  I am hoping that my appointment with my new cardiologist will bring positive results tomorrow.

Thank you for your response and information.  

[peachychou123]

I've had POTS for 6 years and over the past 3 days I have also been been waking up throughout the night with a very high heartrate, especially when turning over. This is a new thing for me. I woke up on friday morning with a HR of around 120-130bpm lying down, which lasted for about 15 minutes then suddenly went away. It's weird because although I'm always slightly tachycardic, it's usually at 85-90 at rest. This is a big increase. I had an EKG but the episode had stopped by that time. The EKG came back normal. My  blood pressure was also quite high. This is also new for me, and scary. I'm not sure if it's an adrenaline surge or anxiety, or a hyperadrenergic POTS flare up. The first time it happened, I was very relaxed and has woken from a pleasant dream, so it wasn't anxiety. But this morning, I had another identical episode, and had been having a nightmare. So it's possible it's to do with hormones such as adrenaline or cortisol. I've had a mild UTI which I took bactrim for. Now I'm wondering if it's the antibiotics. I'm sorry I can't help you, but my symptoms also came on suddenly and scared me, so I can empathise. I'm wondering when these episodes will calm down. I'm always learning new things about this condition too. I know you're anxious, but it seems a lot of people with POTS have described the exact same thing happening to them, sometimes having their highest HR just laying in bed or while sleeping! Any kind of new symptom always terrifies me. But I went to the ER on friday and they didn't find anything. So I'm trying to just relax. I hope you can find peace of mind after your appt.

[Pcola]

@RecipeForDisaster It is good to hear that I am not the only one having the pounding heart at night time.  It seems so backwards from everything I have heard about POTS.  I've always been told if you pass out its all good once you hit the floor because you're laying down.  So then why at night when we're laying down do we become symptomatic?  I am glad you found something to help the misery.  You're right it is easier to handle during the day when you aren't trying to get a little sleep.  I will see what my cardiologist offers tomorrow and will bring up metoprolol if he doesn't.  

Both of my daughters have Dysautonomia, and they do well with Adderall.  Not something my system would tolerate.

Thank you for your response and information.

[Pcola]

@peachychou123  It is a frightening thing to wake up and realize you are tacky not to mention very uncomfortable.  This has been going on about three years for me.  It went away for a few months (no reason I can find) and then returned.  I am currently on Bactrim and have taken it several times over the years.  I had the nightly problem of being tacky before I took Bactrim.  However,  last week just to double check, I quit taking the Bactrim with no change in my symptoms.  I know that when I was seeing my Dysautonomia specialist (now medically retired), he suggested that I was having an adrenalin dump in the early hours of the morning.  However, I am having 3-4 episodes a night.  I end up having to try to sleep sitting straight up in bed as laying down makes it worse.  I also drink 1/2 to 1 bottle of water  (thinking I needed to increase my blood volume) with each episode and after about 15 minutes things go back down to a more normal rate.....until the next episode which is almost to the minute 2 hours later.  I have tried everything I can think of to see if something I am eating, drinking, medications etc. is a trigger.  I have found nothing.  I have been told by several non-specialist doctors that they must be panic attacks, but I just don't see that.  

Thank you for your response, and I hope your symptoms get better soon.

 

 

[StayAtHomeMom]

1 hour ago, Pcola said:

@StayAtHomeMom Does midodrine cause you to swell?  I tried that several years ago, and it seems that I remember it making retain water to the point of being uncomfortable.  I am a little concerned about the cardiologist that I am supposed to see tomorrow.    I always make it a point to check new doctors out (licensing, credentials, specialties, certifications,  claims and length of licensing), and I can't find anything that shows he was ever licensed as a cardiologist.  His specialty (according to all of the licensing boards is Internal Medicine.)  He is located on the same floor as the cardiology department (thats a good sign), but they got me in with one day's notice which is unheard of with every other cardiologist I have ever tried to get an appointment with.  I am hoping for the best.  

Thank you for your reply and the information.  Fingers crossed for my appointment tomorrow.

No my midodrine causes tingling scalp and sometimes tingling skin elsewhere. It was freaky at first but I have gotten used to it. It only lasts a little bit and not everytime I take it, but about 90% of the time. It also causes a slight raising of BP. When I am on both my metoprolol and midodrine my BP is normal 120/80. I was very excited when I found this out.

Midodrine is a medicine my specialist said I can adjust as needed. There are days I don't take it at all. When I know I will be resting all day. And there are days I can take 3 whole pills a day. When I know I will be on my feet for 15 hours. (My in-laws and my family went to the Ark, I was able to do it because of my midodrine. I was very excited). 

Sometimes the unexpected doctors help the most. My cardiologist knew nothing about POTS but was willing to learn. When I had my first TTT the technician walked out for a minute and I heard her ask someone in the hallway how long someone with POTS was supposed to be on the tilt table. Apparently not a lot of people in my area have my condition. At least not enough people for the doctors and technicians to know exactly what is going on. That being said. It took me about a year and a half to get my diagnosis. Which is much lower than the average. 

[Pistol]

@Pcola - I have several comments: first of all - do not be apprehensive about the new doc. He does not have to be a cardiologist or neurologist or endocrinologist to see dysautonomia [patients. My sisters go-to is a PCP!! In my case my PCP is MOST important but I do have a cardiologist and a specialist as well. They all work together for my care. The most important thing in a new doc is that he 1) has an interest for and an understanding of dysautonomia, 2) he is willing to listen to you and takes you and your symptoms serious and 3) he has answers as well as treatment ideas. If he does good on those issues tomorrow then you should be OK. ---- I know from my own experience that a UTI is one of the worst triggers - even during or even after treatment. My specialist says the same thing and he sees tons of dysautonomia patients. ----- I know that at night our adrenalin levels are supposed to drop. In my case - hyperPOTS - they some times do not drop and I wake up when normally people go into REM b/c the levels go down. When this happens it causes my levels to actually GO UP ( not only stay up ). This happens whenever something triggers my POTS. It is possible that the UTI has been your trigger ( even before you knew you had one b/c you must have had it for a while before you sought treatment? ---- I hope this is helpful. Best wishes!!!!!

[bombsh3ll]

Couple of suggestions re your night time tachy to bring up with your doctor (I wake with this too, usually early morning before my alarm and it is horrible);

1) Ivabradine is worth considering as it lowers heart rate without lowering BP. I have decided against this for myself as my resting HR is low, but it may be a good fit for you if you can access it. 

2) Possible tolerance to/withdrawal effects from clonazepam. If you have been taking this every night for several years you may have developed a tolerance so that the dose that once kept you sleeping peacefully is not having the same effect and symptoms you would have had all along but for this are rearing their head, and also you mention trying to lower the dose - this may be producing withdrawal effects. 

I was also going to ask if you raise the head of your bed as is often suggested, but you've answered this re sitting upright. I do wonder if having the head of my bed raised contributes to this problem in my own case, possibly by causing reduced cerebral blood flow (like when we sit or stand up during the daytime) triggering the sympathetic activation & pounding heart etc. I am spending a few nights away from home next week and will pay attention to whether this happens when sleeping flat. 

Good luck with your appointment.

B x

[Pcola]

@StayAtHomeMom  I guess I got lucky with my diagnosis back in 2002.  On a routine visit to my rheumatologist, the nurse noticed my extremely low blood pressure.  She asked "are you alive?"  Stunned I asked what she meant.  She told me as low as my blood pressure she was surprised I was alive.  I was dealing with so many new diagnoses at the time I guess I just thought the symptoms were because of one of the other health challenges I have.  She passed the information on to my rheumatologist who was familiar with Dysautonomia.  He explained Dysautonomia to me, and gave me a referral to a local specialist.  I know many people deal with the symptoms for years without a diagnosis.  Sad.  I will talk to the doctor tomorrow about midodrine and metoprolol.

Thank you again!

[Pcola]

@Pistol  Your point is well taken.  My PCP's PA has been a life saver.  She has helped me with so many different issues in the past.  I think my apprehension about the new doctor is really more about my past appointments with new doctors where I wasn't believed, told my home bp cuff must be broken, was told there is no such thing as Dysautonomia or was written off as a hypochondriac.  I just hate paying co-pays for those types of visits.  I am keeping a positive attitude for my visit tomorrow.   hyperPOTS is a new word to me.  I need to research that.  Another reason I am seeking out a cardiologist is because I have mitral and tricuspid regurgitation and PVC's.  It would be nice to have someone rule that out as part of the problems I am having.  Fortunately, I have not had a UTI in a very long time.  I am taking the Bactrim for a sinus infection.  

Thank you for the information and good wishes!

[Pcola]

@bombsh3ll  Your message brought back a memory.  I too used to only have this right before waking.  That is when my specialist told me I was having an adrenaline dump.  I have always slept on a couple of pillows and recently increased it to 3 because I tend to "burrow"  in my sleep defeating the purpose of the pillows and leaving me laying flat.  I am only sitting straight up after a tacky episode because that position (along with lots of water) helps relieve the symptoms of the episodes.  I don't know why my lips and eyes swell slightly during these episodes.   

I have taken Clonazepam for over 10 years.  It was prescribed to help me get my REM sleep as I was practically insomniac prior to being prescribed and could never catch up on my rest.  I was never told that it was for my Dysautonomia symptoms although I suppose it may have some effect.  One doctor asked "why in the world are you taking Clonazepam if you have Dysautonomia?  It only lowers your blood pressure and heart rate more than it already is."  My problem with waking tacky several times a night started about 3 years ago, and I just started trying to wean off the Clonazepam (looking to do anything to see if it makes a difference) a few weeks ago.  I have noticed no change one way or the other.  The only difference is that the lower the dose of Clonazepam the more vivid and memorable are the nightmares that come with the tachycardia episodes.  Has to due with the amnesiac effect.

Good luck with your trip out of town.  

[StayAtHomeMom]

2 hours ago, Pcola said:

@StayAtHomeMom  I guess I got lucky with my diagnosis back in 2002.  On a routine visit to my rheumatologist, the nurse noticed my extremely low blood pressure.  She asked "are you alive?"  Stunned I asked what she meant.  She told me as low as my blood pressure she was surprised I was alive.  I was dealing with so many new diagnoses at the time I guess I just thought the symptoms were because of one of the other health challenges I have.  She passed the information on to my rheumatologist who was familiar with Dysautonomia.  He explained Dysautonomia to me, and gave me a referral to a local specialist.  I know many people deal with the symptoms for years without a diagnosis.  Sad.  I will talk to the doctor tomorrow about midodrine and metoprolol.

Thank you again!

That is interesting. Never heard of someone finding their dysautonomia during a routine checkup. You are definitely lucky. Almost everyone else I have read about had to fight for their diagnosis and usually took a long time. I remember how helpless I felt in the beginning. I thought I was going crazy. 

[Pcola]

@StayAtHomeMom  I know I am really fortunate in that regard.  I have talked to so many people that have had trouble getting diagnosed muchness get proper treatment for it.  Some doctors still don't accept Dysautonomia as a real medical diagnosis.