Questions about POTS symptoms

[calypso]

I just found this board and am so grateful. I've been working on getting a diagnosis for the last four months. I had my first baby then and seemed to develop POTS within a week of leaving the hospital.

Here are my questions:

1) Can you have high blood pressure with POTS? I had low blood pressure my whole life, then suddenly got pregnancy-induced hypertension 34 weeks into my pregnancy. Since giving birth my blood pressure is generally moderately high (145/95) and sometimes mildly high (125/75). I suspect that maybe the sudden blood pressure changes caused some sort of dysautonomia, but that's my personal theory.

2) Is muscle weakness a symptom for any of you -- like weakness in the hands, where you drop things? I know people with chronic fatigue syndrome say they have had this, and I'm wondering if I have something in addition to POTS.

3) Do most of you get headaches?

4) I am constantly short of breath, even when just sitting. The only time I'm not is when I lie down. Is this typical?

5) Do your symptoms subside when you're not standing?

Any info you can provide would be great. I have had so many tests -- a full cardiology workup, blood tests, CT scans, etc. -- and am getting nowhere. But it seems that most people with POTS don't have the high blood pressure and shortness of breath components, so maybe my docs are missing something.

Amy

Age 28

Mt. Horeb, WI

[llp479]

I have high BP with POTS. My EP, Marcie Berger, is out of Milwaukee and she is very knowledgable when it come to the disease. High BP can cause headaches, and in some cases shortness of breath.

Good luck to you!

[MightyMouse]

The answers are as follows:

Yes, high blood pressure can and does happen with some people with POTS and other autonomic disorders. Think of it as a blood pressure regulation problem, not simply low blood pressure.

Yes, weakness or a sense of weakness can be a symptom. However, don't assume that it is POTS related without consulting your neurologist or POTS specialist first.

Headaches and muscle pain/soreness are common with autonomic disorders. Personally, I have migraines frequently. Again, POTS can co-occur with other disorders, so if you have persistent headaches and/or muscular problems, report this to your doctor.

Yes. Most people with POTS do report having more difficulties when upright and these symptoms frequently subside when lying down.

Lastly, breathlessness or feeling short of breath can be a POTS symptom. I can also be from other things like asthma. If it goes away immediately when you lie down, then it migtht be POTS only. If it does not subside when you lay down, see you doctor.

Hope that helps! nina

[ethansmom]

Amy,

First of all, congratulations on the birth of your baby! I hope you are coping well. I am also a first time mom, but I developed POTS several months prior to conceiving, and experienced a temporary absence of symptoms during the pregnancy, only to have a mild return of symptoms postpartum which have been stable for the past 6-8 months.

To answer your questions, it is definitely possible to have high blood pressure with POTS- or low blood pressure, or fluctuations between the two. I have also definitely experienced bouts of muscle weakness at times, but I think a lot of that has been side effects from various medications- although it is certainly possible that it is caused from the POTS itself. Are you taking any meds?

I don't get too many headaches luckily, but I know a lot of POTS patients suffer from migraines or vascular headaches. The shortness of breath is common as well- this was my first and most bothersome symptom in the beginning, but it has improved over time (or maybe I've gotten used to it?!). It may go away when you lie down because proper blood flow is restored, and the lungs aren't thinking they are out of oxygen- which would be the case for the lack of symptoms in general when you lay down. What doctor are you seeing? Have you been officially diagnosed with POTS? I hope you've found a good autonomic specialist because these conditions are so complex and difficult for typical medical personnel to understand...I wish you the best, and welcome to the board!!

[calypso]

I am taking 25 mg metoprolol twice daily. It made me tired beyond belief for the first month but now I am not tired much at all. It seems odd to me that I don't get tired with this illness like many of you do, although that's at least one thing I don't complain of!

I am also trying to get some info as to whether it's safe to increase salt in my diet because of the high blood pressure. I have never been a salter -- I don't eat canned or packaged foods much. I'm going to a neurologist on Tuesday and am hoping to get these kinds of questions answered.

Thanks for everyone who's chimed in!

A.

[Jackie]

Amy - I also believe you can have high blood pressure with POTS and agree with Nina to think of it as a blood pressure regulation problem whether high/low.

My mother who was diagnosed with chronic fatigue syndrome 13 years ago when it was hardly heard of has had low blood pressure all her life and now she is battling high blood pressure. My sister with MS who was a nurse before she was diagnosed with POTS and then later MS was told by a physician about dysautonomia that sometimes this happens because the body is used to overcompensating to keep the blood pressure up and then sometimes as a person ages you develop high blood pressure because of it.

As far as shortness of breath, I had episodes like that before I had a major POTS episode last summer and was diagnosed. For me, it was sitting up for extended periods of time at my desk and talking too much interacting with people( i.e. on the phone, to family members, etc.) eventually I would just feel short of breath, dizzy/sick, and unable to think straight and too tired to even talk. Yes, lying down and being quiet helped. I didn't understand why I felt that way but looking back I think it was some beginning symptoms surfacing.

I also had an episode of desaturation in the hospital last summer when my O2 sat. went down to only 92% but I felt like my lungs were "glued together". When I read about that symptom here I realized that was what I had...it was an icky feeling...like you aren't getting enough oxygen and a very accurate description of how it feels (i.e. glued together).

Lastly, not all of my symptoms are/were relieved by not standing. I had even resting tachycardia but of course the heart rate was much much higher with any movement (standing, walking around), but it was just less so by lying down. Now I'm on a beta blocker, etc. and at night sometimes I still feel some papitations, etc. even while lying down. I guess my answer is yes lying down helps but doesn't totally take awake my symptoms altogether but helps definitely yes. Often during the day I just take 5 and lay down...sometimes 15! (or a 1-hour nap)...it helps my body regroup in a way I suppose.

People correct me here if I'm wrong but many have mixed diagnoses (chronic fatigue and POTS, MS and POTS, chronic fatigue and NCS, thyroid problems and POTS/NCS...EDS and the list goes on) so it isn't impossible to have more than 1 thing going on or working in connection to destabilize your body. It seems to me that maybe people have this underlying predisposition or low-level symptoms and then something else acts a trigger to the ANS whether it be injury/illness, etc. and you get full blown symptoms. I don't know myself because I know my low-level symptoms looking back over my life and I know my triggers...but my triggers don't make sense and it hasn't gone away this time (the POTS flareup symptoms) so I just don't know how the puzzle pieces fit together. I think all of us want to know our underlying cause so we can get more accurate treatment instead of just symptom management.

Anyhoo, welcome to the boards!

[pamyla]

Hi, welcome to the boards! I also have high blood pressure with the pots. In answer to your question about high salt, increasing salt makes my blood pressure go down. My doctor explains it that my system is compensating and trying to keep the blood to the head. So, when you add in salt and fluids, you're making that job easier and your body doesn't have to compensate so much.

(of course everyone is different and talking to the doctor is a good idea!)

Pam

[calypso]

Oh, I'm so glad others are going through similar things ... well, not that you guys are suffering, but that we all can support each other.

So I presume that it's also common for others to wake up in the morning with POTS at its worst? Getting out of bed -- from lying down to sitting up to standing -- takes me at least 15 minutes if I want to not feel like I'm dying. I even started sleeping more upright because I had such a hard time going from flat to sitting -- my heart rate would go up to 130 just from sitting up. Any other tips on sleeping and such? And do you guys also feel totally stiff in the morning, like you've been sleeping for weeks?

[MightyMouse]

Calypso, having your worst problems in the morning is hallmark dysautonomia. Your hormones that help keep your bp up are at their lowest in the morning. I think most of us do that gradual crawl out from under the blankies! My mom used to dread having to get me up in the morning as it took me forever to get out of the bed. Once I was up, I was raring to go, but getting me out was the hardest part.

To clarify, as I've gotten older, I dont' get so "raring to go" as I did when I was little. In fact, my first jolt of any kind of energy doesn't seem to hit me until mid-day to late afternoon, and is a relatively small window of time.

Again, welcome to our small, but very cozy corner of the internet. Nina

[denabob]

I agree with Jackie.....I see POTS as one of the many branches off the dysautonomia tree!!

When our autonomic system fails they stick a label on us depending on which part of the body is affected but I suppose it is possible for it to continue to break down in different ways along the way.

Mornings are awful!! my daughters both are not morning people either so my house is always tons of fun in the morning before school!!

[Merrill]

Hi Calypso! Welcome to the board! I'm too tired to write a lot (but see my other post in response to Sue; some of that addresses the concerns you ask about.

I'm newly diagnosed, but I've had POTS forever just about ... I recommend reading as much as you can about your condition. Have you visited the NDRF site yet? (national dysautonomia research foundation)

POTS is kind of a garbage can term, and people afflicted with it don't suffer the same symptoms.

To add my 2 cents--some with POTS have bp fluctuations, some do not. I don't believe these changes actually cause POTS.

Some 10% of people with POTS develop it post-partum; chances are pretty good that your symptoms will subside in time.

I get headaches from time to time, but I'm short of breath whenever I walk anywhere! I have to sit down after only a few stairs. It's not too bad sitting down.

I just reread the end of your post -- Have you been officially diagnosed with POTS? Have you had autonomic nervous symptom tests? (Those cardiac tests were mandatory to rule out certain conditions--and I presume you also did 24 hour urine collect too) If you haven't had a tilt table test, ask for one. In all the literature I've read, this is THE diagnostic test for POTS (tho certainly one can have pots and many other conditions simultaneously). If your heart rate goes up 30 bpm or more in the first minute, you got it. (Mine went up 40...) THey hold you tilted for 10 minutes or more; heart rate typically stays high.

And for all you concerned about the fact that you passed out on the tilt table, I just learned that 25% of normal healthy people/volunteers also pass out on the tilt table.

Congratulations on your new baby--I imagine it's especially challenging to be suffering these symptoms when you're just getting to know your baby. But try to take as much joy from each day as you can!