Missy M

I have chronic problems with edema from my Dysautonomia.  My doctor prescribes a diuretic which helps (it does not add to my blood pressure instability, which they always worry about with POTS).  

In addition, water exercise helps my edema. This makes sense. I've read that water exercise is good for the limbic system.

We figure (without knowing) that the edema may just be part of my chronic issue with electrolyte imbalances. We also figure the chronic electrolyte imbalances are most likely caused by the autonomic nervous system not regulating my electrolytes properly.  

Hope that helps. 

I agree. Sometimes simple is best.

I’ve had dysautonomia for 18 years.  

Although in my case it has very gradually progressed over the years, and at this point does quite seriously impact my mobility,  I have to say that I have no immediate plans to die. 😉 

Does his heart rate typically go up when his bp drops?

I ask because my daughter recently got an Apple watch. She was able to set it to notify her when her heart rate drops too low or goes too high. 

So if your husband’s heart rate typically goes up when his bp drops down, he might consider an Apple Watch and set it to alert him when his heart rate hits a certain point. That might clue him in to take his bp. 

It’s just a thought. 

My bp often drops too low or soars too high after eating. I get resultant changes in my heart rate, etc. 

I’ve found it very helpful to eat smaller quantities of food.  (I eat more often as a result.) 

Hope that helps. 

Mine has been soaring lately to very high ranges. The worst so far was 226/190. My only symptoms are typically a sudden headache and dizziness.  In fact, the sudden headache is what clues me in to take my bp. 

When I wore a Holter monitor it picked up enough bradycardia and tachycardia that it led my GP to refer me to an electrophysiology cardiologist. He was the one who recognized my symptoms and diagnosed me properly. He then ran additional tests to confirm my diagnosis.

So the holter monitoring was very beneficial for me in that respect.

Now that I am diagnosed they do not hook me up to holter monitors anymore. They DO hook me up to do ekgs when they run occasional tests such as treadmill testing. 

My docs wrote off my livedo reticularis to either being the result of my inherited autoimmune disease (autoimmunes can be a commonly known cause) or my Ehlers Danlos Syndrome (another commonly known cause). 

One in three people with dysautonomia also have EDS (Ehlers Danlos Syndrome), so I see EDS and livedo reticularis mentioned fairly often in various dysautonomia forums.

One suggestion could be to keep a blood pressure cuff on your nightstand and take your blood pressure upon awakening (before you sit up or stand up). It’ll show you (and your doctor) what your heart rate and bp are doing.

Then after you’ve stood up and walked around a few minutes, take it again (while still standing).

Later on, when everything feels “calm” and you don’t feel dizzy or weird or anything take a reading with the blood pressure cuff again.

The “before and after” various readings might help you and your doctor figure out whether the tachycardia is in response to your blood pressure dropping. 

I know my own doctor found my wrist blood pressure cuff readings very useful. They led him to order specific medical tests, and helped him more specifically advise me what I should do when certain bp cuff readings occur. 

EDS and Dysautonomia (POTS) run in our family.  

We do not have an expectation of being “cured”, although every time we master a new assistive tool or strategy to help us adapt to being more fully functional it is a cause for celebration. 

We also refuse to let it dampen our wacky spirits. 😊😜

I specifically asked my doctor who monitors my dysautonomia for guidelines on when I should go to the ER versus just rest at home. 

He knows all of MY medical peculiarities and gave me some good rules of thumb to go by on when I should go to the ER.

My recommendation is for you to have that same frank conversation with your doctor. Because what might be no big deal for me might be an urgent situation for you. 

It looks like my left leg. I was diagnosed with it being livido reticularis (which someone else mentioned above).

Livedo reticularis is a symptom, not the name of a disease. It can be caused by many things. Since two of the known causes can be autoimmune disorders or EDS (Ehlers Danlos Syndrome), and since I have both an inherited autoimmune and suspected EDS, my doctors and I saw no need to worry about it further. That was two years ago. 

My livedo reiticularis is still present in that leg but faded quite a bit after I did water exercises for several months. I think the exercises benefitted my circulation. 

I find frequent but small meals helps me avoid a lot of the digestive issues, as well as the blood pressure drops I can get after a large “heavy” meal.

I find it helps to lift my spirits to do interesting hobbies with my hands during those times I have to lie down or stay seated. 

Vanderbilt sometimes has research programs where they’ll run some autonomic medical testing for free (to get your data for their research). 

Per my doctor’s suggestion, I use coffee (caffeine) to raise my blood pressure when I get up from sleeping.

Of course, not everyone is okayed to have caffeine. He had done enough medical tests to know that in my case it was fine to use caffeine as a blood pressure raising tool. People should check with their doctors to make sure they are okay to have caffeine. But... if your doctor okays it, it can be a great tool for raising blood pressure. 

We’re all different, but in my case my body needs to rest and “reboot” after an autonomic disruption.

For me, the bigger the disruption the more rest I need afterwards for my body to recalibrate.

I have been diagnosed with severe osteoporosis that is decades more advanced than it should be for my age.

In my case, the rheumatologist who discovered the osteoporosis also did blood work to check my electrolytes. He discovered they were severely imbalanced. He said, yep, that would do it. 

Under his labwork monitoring I corrected the imbalances with careful nutrition focused on increasing my mineral intake to balance out my electrolytes. Long story short, I now keep my electrolytes in balance (with day to day effort) and at least the bone deterioration has stopped. 

I would add that he thinks my autonomic nervous system is responsible for not regulating my electrolytes properly. Makes sense. 

My heart rate and blood pressure roller coaster too high and too low as well.

Frequent water exercise in chest deep water blunts my symptoms (the highs are not so extreme and the lows are not so extreme. I don’t know why, it just does. Maybe the good circulation I get while in the low gravity environment of chest deep water helps my body not be so stressed for blood. 

I sometimes wake up from my sleep gasping for air, and with my heart pounding. 

My cardiologist (who diagnosed me with dysautonomia) said it’s from my blood pressure dropping too low in my sleep, so my body is doing exactly what it’s supposed to do: Wake me up!  Waking brings my oxygen levels back up. 

Sure enough, he was right. I started taking my blood pressure immediately when waking up this way. In my case, it was simply very, very low blood pressure occuring in my sleep, so my body wakes me up.

At least now when it happens I’m no longer frightened. Just annoyed. 

One thing I would suggest which might be helpful is this: Use this forum (as well as other online support groups, such as the closed dysautonomia Facebook groups) to ask people who have it for practical tips on managing specific symptoms your daughter is having.

Those groups can be very useful resources for learning pragmatic ways to manage symptoms.

For example, if you were to ask people for tips on what they do to lessen the problem of warm weather causing blood pressure drops, a few people would probably talk about cooling vests being helpful. Or if you were to ask people what things they always keep with them when they leave the house, you’d probably get tips such as keeping salty snacks in purses along with bottled water.

I’ve had dysautonomia for 17 years, and some of my very best management tips came from such online forums. The doctors know about the drugs, but the actual people who live with this disorder know what the tools are for managing it day to day. 

Hope that helps.

I got a foldable mobility scooter about a year ago, and it has been a game changer for the better! I can now go to many places I had stopped going on account of not being able to do that amount of walking. Sweet freedom! I REALLY like the foldable aspect of it because I no longer drive (due to dizzy spells and passing out) and it means friends can come pick me up without having to have a special handicapped van or special hitch on their vehicle. We can fold the scooter up and put it in their trunk or the back of an SUV. 

It will depend upon your particular insurance policy whether it’s covered. My particular health insurance policy will not cover a mobility scooter no matter what. But other policies might. You would need to ask them. Those that do would probably require a doctor’s note stating it is necessary. 

Hope that helps.

Congrats on your progress!

I am continually marveling at what a HUGE difference eating and drinking the right foods make! 

You indicated you forgot to tell the doctor some symptoms. I can relate! I sometimes leave the doctor’s office thinking “Darn it! I forgot to tell the doctor about that important symptom or event!”

My suggestion would be for you to:

1. Write down the most important symptoms before the appt and take the written list with you to the appointment. Just say “I was afraid of forgetting something important so I wrote it down.” I’ve never had a doctor object to me doing this. 

2. Take someone with you, such as a parent or other trusted adult relative, to be your eyes and ears. It can be hard to remember every little thing the doctor or nurse says. It helps to have a responsible, trusted person with you whose job it is to LISTEN and help you recall the tons of advice/instructions you can get hurled at you in five minutes with a doctor. My husband is a very smart man and he has me accompany him to certain medical appointments to be his extra set of eyes and ears. It can be a wise thing to do.

As far as dysautonomia, all I can tell you is that both I and a niece definitely have been diagnosed with it. Another relative is suspected of possibly having it. Don’t know if that makes it “familial” per se. I’ve had my symptoms for 17 years and for myself I can say that my symptoms do evolve very gradually as time passes. 

Hope that helps. 

You might try analyzing if there are any other triggers which might be raising your blood pressure. For example, caffeine intake? Cold temperatures? Body position? 

It’s winter where I live. In my case, the cold air will raise my blood pressure by 40-50 if I don’t put on my heated jacket. It’s battery powered and heats like an electric blanket does. I specifically use it to lower my blood pressure in cold places such as my somewhat drafty church building. (And in the summer heat I use a cooling vest for the opposite reasons). 

In my situation, standing too long or trying to be too aerobic will usually crash my blood pressure but on occasion will spike it upwards (it’s unpredictable). That’s what I meant by body position.

Caffeine will raise my blood pressure. I use it intentionally to raise it if it’s too low but make a point to avoid it if my bp is too high (or is running in a good moderate range).

These are the possibilities I look at when my bp spikes too high.

You should definitely get assessed by a specialist who is familiar with dysautonomia. 

Fyi, my own specialist who has monitored me for five years does find the digital readings from my wrist blood pressure cuff (which I bring with me to appointments in my purse) helpful. It helps give him objective data which has more than once caused him to order certain helpful medical tests. 

Just fyi, none of us here can diagnose you but I can certainly verify that my own heart rate goes both very fast and very slow sometimes, as you’ve indicated yours does. My doctor in particular said it helped him to see the blood pressure cuff readings for those varying times because he wanted to see what both the high and low bp readings were when the heart’s going fast or going slow. He then ordered tests which assisted him in making a diagnosis for me. 

There are different types of dysautonomia specialists. Mine is an electrophysioligy cardiologist. They do extra trainiing in cardiology to understand how the nervous system signals can affect the circulatory system.