POTS, end of pregnancy and Swinging BP?

[Preggermom]

I am 39 weeks pregnant and I've had pots for a loooong time but it wasn't diagnosed until I was almost 6 months pregnant. I am on 50mg of atenolol to help stabilize my blood pressure and I wear compression socks.
I recently started having horrible headaches, blurry vision, and seeing spots so I started monitoring my blood pressure at home. The lowest today, in a one hour window, is 93/56. The highest is 120/80. Does this seem like a large swing to anyone else? I have been sitting upright in a chair and that is it. My OB doesn't know a ton about pots but she has had previous patients with it, none of them have been as bad as me.
What do I do? Should I push my OB to induce because I am almost 100% positive the swings are from baby or do I suffer with what appears to be pre-e minus the blood work and urine showing no signs of pre-e? Can POTS patients even have pre-e?
AHHH stuck in a spot where no one really knows what to do!!! Hoping there is someone else who can relate to the sudden swings in blood pressure while pregnant and can help me decide what to do!!

Sorry this is kind of random and long, my brain doesn't function well on POTS alone... add in pregnancy and it's really bad!

[Heiferly]

Okay, I said I would post links, and I wasn't joking ... sorry if this is going overboard.  Some of these may be redundant (i.e. the journal articles mentioned within these threads may be the same ones from thread to thread), but I thought it would be valuable to get an idea of what different women's experiences have been.  I will give you one word of advice:  I am pulling up quite a few "ancient" threads here.  It's quite possible that a number of these community members are no longer active on the MedHelp website, particularly if they only logged on to get help during their pregnancy/delivery and had no further questions after baby was born.  So I don't necessarily recommend responding directly on any of these threads (at least not any that are older than 3 months ... just check the dates when the posts were made ... it says right next to the person's screen name); however, if you click on a person's screen name in blue, it will take you to their user page.  Look in the box in the left hand column that says "Posts" and their most recent post on the site should be the first one listed.  You can check the date on *that* post to get a rough idea of how recently they've been active on MedHelp, and if it seems like they still might be "around," feel free to click on the "Send Message" link at the top right corner of their user page and drop them a private message to ask any questions you may have for them.  (If you want to refer back to a particular post of theirs, copy the URL from your browser's address bar on the page where you read the post, and paste it into the body of the message that you send to them.  It will appear as a link in the message they receive.)


http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Dysautonamia-HELP-wanted/show/1085566

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Pregnancy-and-POTS/show/1233540

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-pregnancy/show/1029030

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Any-advice-appreciated/show/1006849

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-Im-pregnant/show/1330019

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-Pregnancy-/show/1034253

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-full-term-pregnancy/show/1256384

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Pregnancy--Labor--and-POTS---What-should-I-prepare-for/show/1396382

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-Pregnancy/show/630774



Well, I hope that gives you some more insight and if you have trouble locating any of the journal articles mentioned in any of those threads, let me know and I'll try to help you get it.  

Take good care of yourself,
-Heiferly.

[Preggermom]

Get to bed!!! Don't want you to over stress yourself just to answer my questions!! They will still be there tomorrow! :)

It's funny (in a way) that you mention narcolepsy... I am to have a sleep study done after I am done breast feeding... the neurologist treating me for pots suspects narcolepsy as the cause of why I am not sleeping and why I have such vivid dreams every night and during naps.

Take care!! Thanks again for all of your information!!!

[Heiferly]

I'm seeing a dietitian now, but not for that dietary change.  For me it was because of loss of appetite issues causing me to not get enough calories in over several months consecutively.  Prior to that, I already kind of ate a lower-carb diet most of the time and the carbs I did eat were the whole-grain, uber-high-dietary-fiber kind rather than a lot of "simple" carbohydrates like sugar, pasta, breads, etc.  I'd stayed pretty faithful to the weight watchers style of eating since going on it years ago to lose weight, and it's not high-protein per se, but it definitely doesn't allow you to go overboard on carbs.

(If you're looking for ways to re-invent recipes toward lower simple carbs, higher-fiber, leaner fats, and including more veggies, HungryGirl is awesome.  I don't get paid to advertise her website/books, LOL.  Although, it is stuff for watching your calories/weight watchers "points," so you probably should stick with normal food until after you're done having the baby and everything.  You need those calories now!!)  This section of her website has recipes so you can get an idea of what it's like.  Her cookbooks are the same idea.

http://www.hungry-girl.com/chew



As for maintaining independence, you're probably asking the wrong person for two reasons.  Well, I guess it's really one reason that has two parts.  I don't exactly have POTS; I was initially diagnosed with POTS and now my diagnosis has been changed to dysautonomia because I don't quite fit POTS any longer.  Not that one patient can really use another patient to predict the progression in their own case anyway, but I wouldn't encourage you to predict yourself to me.  For reasons specific to my symptoms, I don't really have any independence whatsoever insofar as I can never leave my house (even go onto the front or back porch or into the yard) without one of my caregivers with me.  Obviously, I don't drive.  I can't cook for myself, bathe independently, do housework, etc.  I do get breaks during the day where I'm alone for up to several hours at a time between caregiver shifts; these are primarily arranged during my nap times (I need two long naps a day due to the combined fatigue of having narcolepsy on top of the dysautonomia) so I do have independence in the sense of having a little bit of time when I have the house completely to myself (well, the dogs and I).  

Some people do show great improvement with physical therapy; it has a high success rate in POTS in particular.  I'm not sure about full-body physical therapy.  Typically the focus would, at least initially, be primarily on the legs to improve skeletal muscle pump return to the heart.  Greater vascular return to the heart equals less symptoms, so building up those leg muscles can really help!  Many patients find that working out in the supine position or on recumbent bikes, etc., initially is helpful until they build up the strength and tolerance to exercise upright.  Your doctor may be able to write you a Rx for cardiac rehabilitation or physical therapy in order for you to pursue this as an adjunct to your POTS treatment.



Ugh, I keep telling myself I'm going to stop popping back up on the computer and I keep doing it anyway and tehn feeling sick.  Okay, back to bed with me.  Sorry!

[Preggermom]

Thanks a bunch!! I'll have to check in to that text...

As for the second post: TOTALLY read my mind on a lot of that! LOL The neurologist gave me those basic guidelines as well, I should really try to stick to the carbs thing instead of just downing protein and salt and water. I love my pasta though :(

I am finding that it is so hard to do all of these things and make sure I do this this and this. Ugh, and add in the pregnancy and having to be able to get up immediately because baby is crying etc... so glad my mother in law is staying with us indefinitely post delivery!!

I was working on getting a shower chair, but was then not allowed to shower at all because I had a PICC line for hypermesis. Then all of a sudden my blood pressure stabilized and I had no problems with a bath, so I just kept taking baths. Now I shower, but I make sure I shower only when the husband is home in case something would happen.

It's even been so "bad" that my husband and I have decided driving is just not smart. So I don't drive... sooo not liking that! And thankfully the times I do pass out, I have just enough warning that I can sit down before blacking out. I've only hit my head once, and that was against the rug in the kitchen from about a foot above the ground. Sooo lucky on that one! I've also passed out while laying down. Docs are baffled by that and have told me over and over that "that isn't possible!!" Ummm yeah, it is! The neurologist treating me agreed it is possible at least!

Some questions I have for you:
How did you get your diet changed over to low carbs/high protein? Did you see a nutritionist or did you figure it out on your own?

How do you "maintain your independence" with this?!? I hate having to constantly rely on my husband!!!

Any luck with doing physical therapy? I've heard that doing full body type PT can help "train" your body to pump blood better. Have you heard of this?

I am sure I will have tons more questions, I am SO GLAD to have met you!!! Thanks for all of your information!!!

[Heiferly]

So basically, stay frozen cold, don't bathe, don't eat, don't use the toilet, don't cough, don't lie down for too long, but don't sit up too quick!, don't exert yourself, and of course avoid mornings at all costs!!!  I'm only MOSTLY kidding ...  

In all seriousness, here's how to use that knowledge constructively.  Eat smaller, more frequent meals to try to reduce "postprandial hypotension," otherwise known as the drop in blood pressure that may follow a meal.  Carbs are a big culprit in this and protein is your friend, so spread carbohydrates out in small doses across your meals and consume them WITH protein to help curb their effect somewhat.  If you're already feeling cruddy and having low BP, stick toward protein for that mini-meal and get your carbs in some other time that day if you can.  

The "micturition" (i.e. pee) and "defecation" (I'll spell it the US way, Mathias can spell like a Brit ... LOL) thing can be a bit tricky ... in my personal experience, moreso with the micturition part, but your mileage may vary.  I NEVER would have had such detailed insight into this (lest you think I'm a crazy person) if I hadn't had cardiac rehab last year.  During cardiac rehab you're wired up to the EKG during your whole session 3x/week so I had a lot of time to notice trends in my HR, and they also take your BP several times a session.  Oh, AND they're making you drink fluids like a FISH to stay hydrated ... especially if you happen to be the one person in the room who keeps passing out on them ... ahem.  Aaaaanyway.  So if you're drinking and pedaling away, eventually ... you know ... nature is going to call.  After a while I noticed that whenever my bladder started to get full, my EKG would go berserk.  The two events seemed to be highly correlated.  I also have a higher rate of fainting immediately after urinating than at other times during the day, relatively speaking.  It turns out there's a branch of the autonomic nervous system that runs down to the bladder and that not only does it send signals to your bladder, but it gets signals FROM your bladder (duh!).  This sounds so obvious now that I say it, but it was a huge AHA moment for me when I finally sat there staring at that sacral nerve in a book with a scowl on my face.  So the short of my LONG tale is this:  try to urinate frequently (as if you aren't already ... I can already hear you saying it) so that your bladder doesn't get too full and trigger your ANS to go wonky on you, and be extra careful immediately after using the restroom.  The bathroom is a cruddy place to fall because it has so many hard surfaces.  :-(

Speaking of which:  turn the heat down on your showers.  It really is no fun, but make your showers as lukewarm as you can tolerate.  Heat dilates the blood vessels, causing even further pooling of blood.  This can cause a dangerous situation in the shower.  Consider getting a shower chair so that you can sit in the shower (if you haven't already) or taking bed baths.  There are pros to bed baths, I have to say.  Namely, not having to get out of bed when you feel like crud.  

Mornings:  Okay, so you can't cease to exist in the morning, but if you're able to stay in bed a couple of extra hours, that's the next best thing.  Also, keep salty snacks and some drinks on your night stand and get the fluids and salt started before your feet even hit the floor first thing in the morning.  This can help IMMENSELY.  



One more note:  keep your arms below your shoulders!  If there is something you need to reach up for, ask for help!  Raising your arms above shoulder level clamps off the vessels that feed blood to your arms and can be enough to push someone over the edge from pre-syncope to syncope or to increase the severity of symptoms.  Basically, your goal is to keep as much blood as possible circulating to your heart/lungs/brain (and in your case, your baby!) rather than "marooned" out in your arms/legs.


Well, I've been upright for too long myself now and need a rest.  I'll have to get you those journal articles next time I'm on.  I have a doc appointment tomorrow but I'll only be gone a couple of hours so if not tonight, I should be able to get the links for you tomorrow.

Take care!
-Heiferly.

[Heiferly]

So, if I didn't mention it above, I meant to point out that even sitting upright in a chair (especially if your feet are on the floor) is a source of orthostatic stress.  Some people aren't sensitive enough with their dysautonomia for that to affect them, some are (looks like you are at the moment—fun times, right?).  Be careful when you are having symptoms of orthostatic hypotension just from sitting upright; it IS possible to faint when sitting down!  I should know ... I've done it.  (You can also faint off a toilet.  Talk about embarrassing!  Oy!)  Well, if you do either of these things, on the plus side, at least you start off closer to the ground already.  And you'll be in good company ... plenty of others on this forum have been there, done that!

Okay, so here's the textbook I'm about to quote from (I know you're supposed to underline books and put articles in quotes but there's no way to underline on here ... but yes it's a textbook):

Mathias, Christopher J. and Sir Roger Bannister, eds.  "Autonomic Failure: A Textbook of Clinical Disorders of the Autonomic Nervous System."  (4th ed.)  New York: Oxford UP 2006.


So this is a little tricky to quote because it's a table in the book, but I'll do my best.  The parts that are in bold in the original text (can't bold on here either, argh) I'm going to put **'s around, like *this*.  This is quoted word-for-word from page 171 of the aforementioned text and all credit for it goes to Dr. Mathias.  Here goes:


*Table 20.2.*  Some of the symptoms resulting from postural (orthostatic) hypotension and impaired perfusion of various organs
___________________________________________________________________

*Cerebral hypoperfusion*
   Dizziness
   Visual disturbances
      blurred—tunnel
      scotoma
      greying out—blacking out
      colour defects
   Loss of consciousness
   Impaired cognition
................................................................................................
*Muscle hypoperfusion*
   Paracervical and suboccipital ('coathanger') ache
   Lower back/buttock ache
................................................................................................
*Cardiac hypoperfusion*
   Angina pectoris
................................................................................................
*Spinal cord hypoperfusion*
................................................................................................
*Renal hypoperfusion*
   Oliguria
................................................................................................
*Non-specific*
   Weakness, lethargy, fatigue
   Falls

___________________________________________________________________
Adapted from Mathias (1995a).



As you can see, it does seem that your symptoms can be explained by your orthostatic hypotension (the low blood pressure being caused by you being upright, even if it's "just" sitting upright in a chair) and the resultant hypoperfusion (insufficient oxygenation) of your various tissues and organs.


Here is another chart which lists other conditions which impact orthostatic intolerance.  All but one in this chart are known to worsen it.  (The exception is noted with a footnote.)  Here it is word-for-word as it appears in the textbook on page 174 of the book I cited above:




*Table 20.3.*  Factors influencing postural (orthostatic) hypotension
___________________________________________________________________
Speed of positional change
................................................................................................
Time of day (worse in the morning)
................................................................................................
Prolonged recumbency
................................................................................................
Warm environment (hot weather, central heating, hot bath)
................................................................................................
Raising intrathoracic pressure—micturition, defaecation or coughing
................................................................................................
Food and alcohol ingestion
................................................................................................
Physical exertion
................................................................................................
Manoeuvers and positions (bending forward, abdominal compression, leg crossing, squatting, activating calf muscle pump)*
................................................................................................
Drugs with vasoactive properties (including dopaminergic agents)
___________________________________________________________________
*These manoeuvers usually reduce the postural fall in blood pressure, unlike the others.

Adapted from Mathias (1995).

[Heiferly]

Actually, because atenolol can sometimes make blood pressure too *low* in people with dysautonomia (and POTS in particular), the change here (considering your symptoms) would be to slightly lower the dose rather than to raise it.  But if your doc doesn't want to rock the boat at this point, then let's discuss "lifestyle change" type adjustments you can focus on instead!  That's easy!

My home health aide is here doing my medication reminders and helping me eat dinner right now, but once she gets me settled for the evening I'll be back here to post that stuff.  I just bookmarked two sections in one of my medical textbooks yesterday that I think will be really helpful to you.  :-D  

I'll also get you some links to some past threads about pregnancy and POTS where I've posted medical journal articles about the subject so you can get your hands on all of those and share them with your OB!  There are a few really great ones out there, especially on the subject of tailoring the delivery to your unique needs to make sure everything goes smoothly for you and the baby from start to finish!  

Be back in a jiffy!
-Heiferly.

[Preggermom]

Yay!! So glad to have such a detailed response!!
First off: Talked to the OB, she feels comfortable with the ranges in blood pressure. She also stated that should the headache not continue to get better or if it should come back, I need to call and either go in to L&D or bump my appointment up from Thursday. Other than that there is no concern for pre-e. All lab results were negative on Saturday.

I've been on modified bed rest the entire pregnancy because of the low blood pressure and being considered a fall risk. The doctors decided at week 37 that I could discontinue that as I felt comfortable doing so. Obviously on days where I was feeling faint I would need to take it easy, but I could resume normal activities such as walking and house chores. I had been doing well until this past Friday! I did have to increase the atenolol in January because of a similar unstable week, but with that I was passing out instead of having headaches and the vision disturbances. This is all so weird how MUCH the symptoms can change!!

They had me lie on my left side for 3 hours in labor and delivery on Saturday and I still had quite a fluctuation in blood pressure. Not enough for them to be concerned, and quite honestly the ob treating me at the time was not my doc and had no clue what POTS was. I am drinking water like crazy right now, so the only other thing I can think of doing is increasing my salt intake, again.

"If you're not accustomed to what things exacerbate the pooling of blood/BP drops (that is to say, it's not just standing up/orthostatic stress), let me know in a reply to this and I can give you some ideas of what to avoid to keep things a little more stable." The more information the better!!!! My sister also has POTS but hers does not cause fainting or fluctuation in blood pressure, hers is more blood sugar related. No one really seems to know much about this condition and the doctor who is treating me is located 3 hours from where I live. I do see him April 22nd, post baby, and I can call him 24/7 but treating over the phone is proving to be a challenge! Plus, he hasn't had a lot of experience with pregnancy and POTS. And there really isn't a lot of information available online either. :(

The reason they chose atenolol is because it is pregnancy safe and because they based it off of how my sister reacted to the other pregnancy safe option. The neurologist treating me said that quite often if one family member has trouble with a beta blocker, most likely you will too (he is also treating my sister). I do know that as soon as I am done breast feeding the option in drug and in dosage is going to be changed. But for now, this was what the best solution was. He also stated that so close to delivery that the change in dosage isn't going to be beneficial and could cause more instability in blood pressure, so he is leery of increasing the dose anymore right now. Does that sound right/make sense?  Not trying to say you are wrong or anything, just trying to give information with a very foggy brain!

Something else no one knows (doctor wise) what to expect is the reaction I have with contractions. It feels as if the blood pools to my stomach, like I can't breathe, and like I have an elastic band around my torso. No one is quite sure what I mean nor do they know what to do about it. We are currently set for a vaginal delivery with a gradual increased epidural, but are prepared to do an emergency C-section if we find out my blood pressure not being stable is distressing baby/me.

Thanks for all of the information!!! I feel so lost and like a lab rat with all of the "unknowns" from this pregnancy!!! Wish I would have found this place sooner!!

[Heiferly]

I'm sorry you're so symptomatic.  :-(  From the blood pressure readings you have given here, it does not look to be indicative of pre-eclampsia (I think that's what you mean by pre-e, please correct me if I'm wrong) which would come with a systolic of at least 140.  As you said, there are other indicators of pre-eclampsia as well.  Of COURSE, I am not a physician and PLEASE if you are concerned that you may be showing signs of pre-eclampsia, talk to your OB right away!

The blood pressure swings you are discussing, (concerns of pregnancy complications aside—we'll presume for a moment that you've discussed this with your doc and s/he said it's not pre-eclampsia or any other complication), would not be considered atypical for POTS at all.  Even if your case of POTS has been milder in the past and these BP swings or these symptoms are not typical for YOU, they are within the realm of "normal" for the diagnosis of POTS and it's definitely within the realm of possibility that this stage of the pregnancy has brought them out.  There are changes in blood volume that occur throughout the various stages of pregnancy.  Also, as the baby grows and places pressure on different blood vessels and organs, this can have different effects on the symptoms of dysautonomia (POTS).  

I read in one place that lying on your left side (I think it was advice for the second trimester in particular, but what do you have to lose in trying it at any time, really?) may alleviate some of the symptoms that women experience in a POTS pregnancy, so you might want to give that a shot.  In general, the same advice as usual applies that keeping your feet elevated (WAY up, not just on a low footstool, because if they're still angled down from your body the blood will still have a tendency to pool) can be helpful in reducing the symptoms of dysautonomia/POTS.

The symptoms that you are describing—"horrible headaches, blurry vision, and seeing spots"—are due to reduced oxygen perfusion to your brain.  Do what you can to prevent blood from pooling and to help blood get up to your head!  If you're home today anyway and you have a recliner, that's probably the best spot for you!  The closer your head is to the level of your heart, the easier it will be for your heart to get the blood to your head (i.e. less fighting against gravity).  

If you're not accustomed to what things exacerbate the pooling of blood/BP drops (that is to say, it's not just standing up/orthostatic stress), let me know in a reply to this and I can give you some ideas of what to avoid to keep things a little more stable.  

Also, beta blockers like atenolol are known to cause potential hypotension (low BP), especially in people with dysautonomia.  Some POTS patients with a tendency toward low BP can't tolerate it for this reason.  If you haven't reported these symptoms and low BP swings yet to the doctor who has you on the atenolol, you need to do that ASAP to make sure s/he doesn't want to adjust your dosage or change your medication.

You can view the side effects of atenolol here (for the full details, scroll down to where it lists the "physician" information):

http://www.drugs.com/sfx/atenolol-side-effects.html


I hope this information is helpful.  Keep us updated and let us know any further questions,
-Heiferly.