Missy M

Yes. I’ve had symptoms for 17 years. In my case, the symptoms have very gradually but quite definitely evolved over the years.

So a medical test for me may yield one set of results one year but yield quite different results a few years later. In my situation, the dysautonomia has most definitely changed over time. 

That’s what makes it feel like trying to nail jello to the wall sometimes... new symptoms (or slight changes in symptoms) seemingly randomly pop up many, many months apart. The gradual nature of the symptoms evolving over time can make it challenging to connect the dots on “cause and effect”.  For example, I never had leg pain until suddenly I did. It ended up being years before a blood test (taken for a whole different reason) showed the mystery muscle pain which had lasted for years was caused by an electrolyte imbalance... caused by the dysautonomia. Once we knew that, the mystery leg pain - mistakenly thought by one doctor to be arthritis- was then easily resolved with nutrition efforts aimed at electrolyte balance.

I’ve found it can help me sort things out to list on paper a timeline of when each new symptom appeared. It helps me to see it all on a timeline as a general overview. I can then spot connectiins (or even figure out changes in circumstances that might have been triggers for new symptoms) which I had not noticed before. 

If it makes you feel any better, I think many of us have “good days” and “bad days”. I’m not minimizing your naturally being upset at experiencing some bad days. I’m simply trying to say “Do not lose heart”. Sometimes our condition just naturally seems to wax and wane, like the moon or the tides.

What I try to do when one of those “bad days” (or cluster of them) happens is stay hydrated, eat salty food, focus on good nutrition, and do a hobby I can do while lying down. 

I’ve found that if I have enjoyable hobby materials always at the ready, instead of perceiving a forced day of lying down as “a frustrating interruption of what I wanted to do”, I now perceive it as “Okay, I’ll do this fun hobby today”.  (For me it’s painting puctures and blogging).

Inevitably, a new day rolls around that is a “good day”and I can just pick up again where I left off on the last “good day”. 

Hope that helps. 

I personally think the doctors skirt around the question because they don’t really know. There’s just not much solid research out there yet.

I can only personally say that my dizziness symptoms began 17 years ago. (Although now my docs think I had dysautonomia for many years before that, judging by long term bone damage caused by my very bad electrolyte imbalance obviously occurring for what they now think was probably decades. I’ll add that once we knew about this we stopped the bone damage from progressing further by simple daily nutrition focused on electrolyte balance. Wish I’d known sooner.)  

I’m older than some of you. Old enough to be a retired grandma. I’ve had kids and a great career.  Did I have to adapt to my physical limitations, which for me did very gradually progress over the years? Yes I did. 

In my opinion, half the battle is keeping a mindset open to constantly seeking out ways to adapt to what your body is able to do. My skills at creatively using assistive devices to keep on doing things I enjoy are quite excellent. If I want to go outside in the heat, I put on my cooling vest. If I want to stay on task even though my crazy eyes are suddenly overdilating, I put on my sunglasses (even inside my home or at church). I carry a portable stool around so I can sit at a moment’s notice (my friends are used to it and think nothing of it). 

My best advice for handling this long term is stay educated about it and always think in terms of “how can I adapt to this situation to still do things I want to do?”

While there are realistically certain things I can no longer do (like ballroom dance, which I did for years) I’ve found other fun substitutes (painting pictures and blogging). Life has gone on and I’m still having lots of fun. 

Hope that helps.

I am just a layperson like most everyone else here. That said, it’s my understanding from reading many articles over the years that Dysautonomia can be caused by many different things. Causes that you commonly read about include autoimmune inflammation and trauma injuries (such as a car wreck). There can be other causes as well. 

In my case, my doctors figure that an inherited autoimmune disorder (which I and some siblings share) probably chewed up my autonomic nervous system.  Both I and a niece have Dysautonomia, although others in the family developed other equally serious but different ailments from their inherited autoimmune disorders. 

I definitely notice a correlation between times that my immune system goes into inflammation overdrive and times my Dysautonomia symptoms worsen. In my case they go hand in hand. Keeping my autoimmune inflammation down seems to help ease my Dysautonomia symptoms some. 

My cardiologist who monitors my POTS & NCS evaluated me for a pacemaker by doing a (for me, second) Tilt Table Test specifically for that very purpose. As I understand it, he was wanting to see if my heart was erroneously sending itself incorrect signals versus was it a healthy heart being sent incorrect signals from an “outside source” (my nervous system). 

In my case, he determined that a pacemaker would not solve my particular heart rate issues. I appreciated him making sure before putting me through a pacemaker surgery. 

I had a very positive experience with Midodrine for the first 9 months I took it. Then, as my condition evolved, my dosage needs changed. I found that keeping my doctor informed helped, as he guided my gradual reduction in dosages (which for my particular situation was the appropriate response). It was helpful to him, he said, for me to keep him informed. I would typically do this by phoning his nurse.

I do recommend you keep ypur doctor informed and change dosages only under medical supervision. 

I no longer take it, but that’s only because my body very gradually evolved into producing hyPERtension (too high of blood pressure) as well as hyPOtension (too low of blood pressure). I’m a roller coaster girl now with regard to my bp, so it was determined by my doctor that midodrine was no longer a workable solution for me. 

One possible thing you might try is use google to locate any electrophysiology cardiologists who practice medicine near you. 

Electrophysiology is a specialty type of cardioligst. They get extra training to learn how to recognize the nervous system’s impact on the circulatory system. They’ll tend to state on their clinic websites if they are certified in this, since they have to go to a lot of trouble to get this extra certification.

I only know this because the specialist who recognized my dysautonomia (after a neurologist and a regular cardiologist did not recognize it) is an electrophysiology cardiologist. He and the one other electrophysiology cardioligist at their heart clinic are the two who treat patients with autonomic nervous system malfunctions. 

I’m in another State (Arkansas) or I’d suggest my own doctor to you. 

I simply take baths, to avoid the standing problems that go with showering. 

You might ask her physician to do a blood test to check her electrolyte levels. There’s a simple blood test for that. 

My niece and I both have dysautonomia. In our situations, we get extremely severe, debilitating muscle spasms if our potassium levels drop too low.  My niece’s family thought they were actual seizures and still refer to them that way (they can be that bad). Fortunately, once we each became aware of our body not keeping our electrolytes in balance we’ve been pretty mmuch able to stop the problem bby eating high potassium foods daily. 

This may not be what’s going on in your family but could be worth exploring. 

Like many of us my nervous system works much more normally when I’m chest deep in the low gravity environment of water. Getting in water and exercising has helped me to stop gaining weight, plus gradually lose some of the weight I gained from having to be so sedentary. 

It may help to record what your blood pressure is doing at these times of dizziness, to show your doctor(s) later.  My doctors have found that useful.  

I’m not at all saying that seeing a neurologist may not be helpful. It may prove VERY helpful!

I’m only adding that, in my case, it was an electrophysiology cardiologist who was the specialist that ID’d my issues as dysautonomia and confirmed his diagnosis with appropriate medical tests.

So electrophysiology cardiologists (a type of specialty cardiologist) can also be helpful. They earn extra certifications in how the nervous system impacts the cardiovascular system. Most electrophysiology cardiologists will list this specialty in their listing on their clinic websites since they have to go to so much extra trouble to earn that certification. 

It can be helpful to keep the perspective that a person’s dysautonomia can evolve over the years. 

My symptoms began 17 years ago. Initially I could still do my favorite sport (fencing). Things gradually changed and I switched to ballroom dancing. After 12 years of that I shifted to non-aerobic water exercise. 

Whatever a person’s particular exercise abilities at the time, if our body changes it can be (in my opinion) helpful to pro-actively seek other options. 👍🏻

It would be wise to have your doctor evaluate your chest pains so that you’ll know whether you should be alarmed (or not).

In my situation, after a thorough workup and tests my doctor determined I have a healthy heart and should not be alarmed. So it gave me peace of mind. But it could have been a different result, so it’s definitely the smart move to consult with your doctor! 

I got daily migraines from laying down for 1 1/2 years. Here’s what I found that helped me:

1. Sleeping propped up on a wedge pillow bought me more time asleep before the headaches would wake me. 

2. Upon awakening, pedaling non-aerobically (in “slow motion”) with a floor pedal exerciser while seated in a chair would typically resolve my headache in an hour or two. Using caffeine (coffee, which my doctor okayed for me) while pedaling helped. As a bonus, it would stabilize my heart rate and blood pressure for as long as I pedaled. I’m guessing (without knowing) that perhaps it “unpooled” the blood in my lower legs. 

3.  I’m not claiming this would work for others but my daily migraines surprisingly went away when I went on a moderate ketogenic diet. I went moderate to avoid the dizziness, etc. that people often get with keto diets (we already have enought dizziness in our lives with dysautonomia). The migraines were one of three symptoms that went away after five days on the keto diet (the other two being edema and bradycardia). The diet has zero impact on my other symptoms (tachycardia, hypotension, hypertension, etc.) So it’s no “cure”. But hey, I’m SO incredibly happy to be shed of those headaches that I now do the keto diet as a lifestyle. I would add that if I get careless and don’t follow it precisely then my banished symptoms do return. This all sort of makes sense to me because I read that a keto diet is a longstanding, mainstream medical treatment for epileptics because of the stabilizing effect it can have on the nervous system. 

Hope that helps.