♥ FAQs ♥

DYSAUTONOMIA: My Frequently Asked Questions

I have received a lot of emails from readers asking me a variety of questions about my personal battle with Dysautonomia aka POTS.  I really would like to answer all of you individually but because my 'good days' are few, I often don't get to answer you in detail the way I would like. Therefore, I thought I would take the time to do a Frequently Asked Questions (FAQ) Series. I hope this will be helpful to those seeking answers about this disease and educational for those of you who would just like to know more about my life with this illness. 

1) WHAT KIND OF DYSAUTONOMIA DO YOU HAVE? 

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) with Reflex Syncope (fainting), Anoxic Seizures and Autonomic Neuropathy.....along with a whole host of other issues associated with those. 

2) WHAT EXACTLY IS POTS AND SYNCOPE?

POTS is a disease of the autonomic nervous system that is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. Syncope is when you lose consciousness/pass out.  

When I stand, the vessels in my legs and abdomen do not constrict properly in order to send blood back to my heart. Therefore, the heart does not have enough oxygenated blood to pump to my brain. This causes a rapid rise in my heart rate and a significant drop in my blood pressure. When the brain does not get enough blood (oxygen), it can not function properly and send appropriate signals. It is at that point that I pass out and often have a seizure due to lack of oxygen to my brain.   

3) DO YOU FAINT/HOW OFTEN DO YOU FAINT? 

Yes, unfortunately, as I stated before I do faint. I have syncopal episodes (fainting) pretty frequently. However, over time, I have learned how to recognize the symptoms, so I am better able to recognize when they are coming on and I am sometimes able to get down on the floor to prevent completely passing out and falling. Sometimes though, I don't even realize anything is happening until I wake up on the floor. 

4) HAVE YOU HAD SIGNIFICANT INJURIES FROM FALLING?

By the Grace of God, I have not yet had any major injuries. I've had many bumps and bruises and a couple of pretty good lacerations but so far nothing serious.

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 due to my body's inability to make enough blood plasma and red blood cells)
* Tachycardia (elevated heart rate)
* Hypotension (Low blood pressure)
* Pain
* Extreme fatigue and weakness
* Gastroparesis
* Nausea/Vomiting
* Diarrhea/Constipation
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat/cold
* Sleep disorders - mostly insomnia and inability to stay asleep
* Small Fiber Neuropathy or Autonomic 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. Olubunkola 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!


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 in 2009. 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 have spent an average of a week to 10 days in the hospital. I've now had a total of 3 different ports and 2 PICC lines due to the infections. This treatment option must not be considered lightly.   It is no longer an option for me. 

9) WHY ARE YOU NOT ABLE TO GET OUT MUCH EXCEPT FOR YOUR DOCTORS' APPOINTMENTS, HOSPITALIZATIONS, ETC? 
This illness has left me completely bedridden since just before Christmas 2010. I must have help doing almost everything, from getting bathed and dressed to having someone prepare my food and help me back and forth to the bathroom. Every time I am up on my feet, there is a very likely risk that I will pass out, fall and injure myself. I have a wheelchair but just sitting upright in it for more than a few minutes makes my blood pressure drop and my heart race. This makes me extremely nauseated and often I start vomiting. The same is true for riding in an automobile. All of this not only makes me feel miserable but it is very embarrassing, too. Therefore, I stay home where I can be in a safe, controlled environment and feel a little better, too.  
 
10) WHAT ARE SOME OF YOUR INTERESTS? HOW DO YOU OCCUPY YOUR TIME?  
I truly enjoy my quiet moments with the Lord, in His Word. When I am able, I love spending time with my family, reading, blogging, Pinterest, listening to music on my iPod, watching TV and occasionally attending my 2 youngest daughters’ college band activities (Unfortunately, I haven’t been able to do this in quite some time.) Some of my other interests include Interior Design/Decorating, Buying/Selling on Craig’s List, Public Safety-EMS, Child Safety, Dysautonomia Awareness, Being Frugal/Thrifty, Living Debt Free (I♥ Dave Ramsey!), Teaching Others How to Become Debt Free and Participating in Message Boards about any of the above! I have just started dabbling a little in learning about photography. I collect teapots, nutcrackers, beautiful stationery and books.


11) IS THERE A CURE FOR DYSAUTONOMIA/POTS? 
There is no known cure for my illness at this time. Right now, all they can do is treat the symptoms. However, I serve a MIGHTY GOD and I know that through Him, ALL things are possible! 

12) HAVE YOU APPLIED/BEEN APPROVED FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI)? IF SO, HOW LONG DID IT TAKE? 
Yes, I was approved for SSDI on the very first attempt! I did my initial application over the phone in December 2008 and I was very pleased with the representative who took my information. She was very kind to me and seemed very empathetic. She even stated at the end of the interview that she would request that my case be expedited. She explained that she wasn’t in a position to actually approve it to be expedited but she could recommend it. A couple weeks later, my husband and I had to fill out a few other forms and I had to have my eyes examined at the Health Department.  

Very long story short, I was approved for SSDI in February 2009. I firmly believe I was successful because I was completely prepared, as were my doctors. I am very thankful for their help, but I am especially thankful for the help and advice of one very special lady. Her name is Carolyn Magura. I was very blessed to find her on the SSDI message boards at ButYouDontLookSick.com. She gives EXCELLENT advice there and on her own website DisabilityKey and her blog Disability Key Blog. I very highly recommend you check out those sites if you are preparing to file for SSDI or if you have already been turned down. I truly believe they played a HUGE role in my being prepared which led to me being approved so very quickly!  

13) WHO ARE YOUR POTS DOCTORS AND/OR WHAT DOCTORS/SPECIALISTS DO YOU RECOMMEND? 
My original cardiologist who suspected that I had POTS was Dr. Olubunkola M. Olubi (Dr. Olubi) at Cardiac Disease Specialists (Newnan, GA Office). Dr. Dan Dan (yes, his name is Dan Dan!) who also works for Cardiac Disease Specialists (Piedmont Hospital - Atlanta Office) is the physician who confirmed my diagnosis with the Tilt Table Test (TTT). 

It wasn't long after the TTT that I was referred to the VANDERBILT AUTONOMIC DYSFUNCTION CENTER at Vanderbilt University Medical Center in Nashville, Tennessee. There I was evaluated and treated by Dr. Satish Raj.

The doctor who truly keeps everything going for me is my Primary Care Physician (PCP), Dr. Patrick Railey. He is an amazing family practice doc I used to work with, go to church with and do medical missions with before I became so sick. Like most physicians, he was not extremely knowledgeable about Dysautonomia before my diagnosis. However, he has really went out of his way to learn as much as he can about it so that he can help me as much as he can in his capacity as my PCP. He has been a huge advocate for me and a true blessing to my family and me during this crazy time in our life.  

I do not have any personal knowledge about any other doctors; however, you will find a great PHYSICIANS' LIST at the Dysautonomia Information Network (DINET) website. 

14) DO YOU HAVE ADDITIONAL RESOURCES YOU CAN PROVIDE? 
Absolutely!!  I have found a lot of great information over the last few years as I've found and began following various medical sites, blogs, social networking sites and message boards.  I've also read a lot of great published medical articles, as well as, wonderful books written by medical professionals who are experts in this particular field AND books by other 'experts' - those who have been suffering from chronic illness(es) for years and years.  I highly encourage you to buy Lynn Adams book, 'God Needs Me: Living with Dysautonomia.  The link is listed below.  It is absolutely amazing!  

I have a very comprehensive list of all kinds of resources that I've been working on for a long, long time.  It is listed at the top of my home page in the Navigation bar OR you may simply click here:

RESOURCES