DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 2

Please note: If you have not read PART 1 in this series, please click on the following link to do so before reading this post. It will make a lot more sense that way! :0)

PART 1 Questions 1-4

5) WHAT EXACTLY IS THE AUTONOMIC NERVOUS SYSTEM?
The Autonomic Nervous System (ANS) is the part of the central nervous system (CNS) that regulates the bodily functions that occur without conscious effort. For example: respiration, pupil size, heart rate, blood pressure, temperature regulation, digestion, salivation, blinking, etc.

6) WHAT ARE SOME OF YOUR SYMPTOMS?

There are so many different symptoms of Dysautonomia and, often, they are mistaken for other illnesses. Here are some of my symptoms:

* Syncope (fainting) or near-syncope
* Falls
* Hypovolemia (dehydration/low blood volume)
* Tachycardia (elevated heart rate)
* Hypotension (Low blood pressure)
* Pain
* Extreme fatigue and weakness
* Delayed gastric emptying
* Nausea/Vomiting
* Diarrhea/Constipation
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat/cold
* Sleep disorders
* Small Fiber Neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever/Chills/Flushing
* Noise/light sensitivity
* Visual disturbance
* Tremors

7) WHEN DID YOU FIRST BECOME ILL AND HOW LONG DID IT TAKE FOR YOU TO BE DIAGNOSED?

It is thought that I have probably had this illness since childhood but it became active in 2007 after I had a host of medical issues in late 2006 - early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socketed but also opened a hole into my sinus cavity. This needed to be repaired surgically but it was Christmastime. All the dental staff was on vacation, plus I was scheduled for abdominal surgery in January, so I had to wait. In January, I had surgery for endometriosis, a bladder sling placement and an umbilical hernia repair. After my abdominal surgery and subsequent recuperation, the surgery to repair the hole in my sinus was scheduled for March. I had the sinus repair surgery. Everything was going well until I developed Pericarditis (inflammation caused by an infection in the sac that surrounds the heart) in July. From that point on, things began to go downhill quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi. After the first couple of visits, she started to suspect POTS. She then scheduled me for a Tilt Table Test and the diagnosis was confirmed a few weeks later. I was very blessed to have found a wonderful doctor quickly after my symptoms presented!

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8) WHAT KIND OF TREATMENTS HAVE YOU TRIED AND HAVE THEY WORKED?

Lifestyle Changes - I have made some very necessary lifestyle changes - increasing fluid and salt intake, eating smaller, more frequent meals and keeping snacks handy in case my blood sugar drops. I also must limit exposure to loud noise, bright lights and temperature fluctuations.

Compression Hose - I tried wearing the waist-high compression hose (30-40 mmHg), however, that was not very successful due to the extreme difficulty in getting them on and off. Plus, you are only supposed to wear them when you are up walking around and I am not able to do that much.

Medication - I have tried all kinds of medications, none of which have worked at all for me OR I have had some kind of bad reaction to it. (Atenolol, Propanolol, Midodrine, Florinef, and Wellbutrin to name a few.)

IV Hydration - IV fluids have been the most beneficial treatment for me out of everything. The fluid helps keep my blood volume up and that helps keep my blood pressure up. I usually take a liter of fluid a few times a week -- depending on how I'm feeling. However, due to the length of time I've had to have IV access, I ultimately had to have a port -a-cath placed in my chest about a year and half ago. Since that time, I have had several very serious bacterial infections that have either started, or eventually ended up, in my port. Each time this happens, it is an extremely dangerous situation and I spend an average of a week to 10 days in the hospital. I've now had a total of 3 different ports due to the infections. This treatment option must not be considered lightly.

Thanks for stopping by again. I hope you will check back for Part 3!

Blessings,

Teresa