** Due to the increasing severity of MY ILLNESS, it has become impossible for me to continue to post on a regular basis. Unfortunately, as much as I desperately long to, I am also unable to visit each of your blogs often or reciprocate all the loving, supportive comments many of you continue to leave - even though at times it may appear as though you've arrived at some long ago, forsaken blog! With that said, I really want you to know that I miss every single one of you and that I really am still here! I'm just too sick and too weak most days to be able to sit up long enough to create a brand new post...or even read one. However, I absolutely do receive AND read every new encouraging word you leave (and, often, the old ones, again and again!) and I cherish them now more than ever! I truly appreciate your love, support, and, most importantly, your precious time spent on your knees in prayer for my family and me. It ALL means the world to me and I am truly blessed to have friends like you!
~Hugs and Sister Love, Teresa

FYI: All comments come to my email, which I can easily read on my phone. I also enjoy Facebook on my phone because I can catch up on A LOT in a very short time there. Soooo, if you're on Facebook, come 'friend' me there! {{HUGS}} **

Thursday, March 18, 2010

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!

0

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

9 comments:

christy rose said...

Thanks! I have learned even more now!

Debbie in Nashville said...

These answers are very interesting and I've learned os much. Thanks for sharing.

Kerri said...

Hey Teresa,
Thanks for stopping by my blog and leaving such a nice comment. I hope you have a great weekend... Let's keep in touch.

Young Wife said...

I'm glad you were able to get a diagnosis so quickly. Thanks for sharing your experiences.

Brenda said...

I'm hoping you feel better and better every day. You sound so strong. Good for you for educating others despite your illness. ((hugs))

Supermanslady said...

Thank you for stopping by my blog today! I have really enjoyed reading this post and a few others I have looked at. Thanks for answering questions about your illness so candidly. And for showing such an awesome faith in God!

Bless yoU!

Tammy said...

Thanks for part 2! Some days must be really tough! Praying for you girl!

Lucy said...

Hi Teresa,

Thanks for stopping by my blog! I love your FAQ- really helped me learn some things about POTS I didn't know. Really great info. Your blog is great! Hugs to you, i look forward to following and reading your posts. I hate that you have POTS- but I'm thankful that you are blogging about it so the rest of us crazy cats can learn about it from you.

Blessings,
Lucy

septembermom said...

That is a wonderful doctor who was able to recognize the symptoms early. Thank you for sharing this information Teresa.

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