** 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}} **

Monday, May 3, 2010

DYSAUTONOMIA:
The Story of My Illness - Revised

(I am having a really difficult time right now, so I picked this post that I wrote back in July of 2009 to revise and update for everyone to read again. I'm hoping it will help my newer readers understand my illness a little better and, hopefully, refresh the minds of those who have been following me since the beginning.)


I thought I'd take the time to write a post to try and explain exactly what my illness is and hopefully do it in a manner in which you can understand it better.

In 2007, I was diagnosed with a very rare neurovascular disease that has greatly affected my life and the lives of my family. It is so very rare that most physicians have never even heard of it. However, I was very blessed to be referred to an amazing cardiologist who was very familiar with the disease and recognized the symptoms right away! That is almost never heard of.

The disease I have is called Dysautonomia, or sometimes Postural Orthostatic Tachycardia Syndrome (POTS), with Reflex Syncope. It is a disease of the autonomic nervous system. In my case, it causes very frequent syncopal episodes (fainting/unconsciousness). I have had HUNDREDS of syncopal episodes since becoming sick in 2007.

In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously aware of like your blood pressure, pulse, respiration, temperature regulation, perspiration, salivation, urinary and gastrointestinal function, etc. Since my autonomic nervous system is not working properly, it results in a reduction in the ability of my heart and circulatory system to compensate for the changes in posture which causes extreme dizziness and often syncope (fainting) when I stand, especially if I stand suddenly or for more than a few minutes, often just seconds.

When you stand, your body should adjust to the affects of gravity on your body and compensate for that. For some reason, mine does not compensate well. When you stand, the vessels in your legs and abdomen should constrict so that blood and oxygen gets to your heart and brain adequately. For me, when I stand, the vessels, particularly veins, become unnaturally dilated, causing blood to pool (get caught) in my legs and abdomen. Therefore, my heart beats way too fast in an effort to make up for the reduced blood volume transferred by each beat. This quickly results in my blood pressure dropping incredibly low and at that point I usually pass out due to the lack of oxygen to my brain.

Once I am lying on the ground, I eventually regain consciousness when the oxygen becomes adequate again. This can be anywhere from a couple of seconds to 10-15 minutes. Often while I am still unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. A couple of years ago, I had several tests and was told that it was not epileptic-type seizures and that they did not know what it was. However, later I was told that it is a response due to lack of oxygen to the brain. This is thought to be Reflex Anoxic Seizures or, in other words, seizures caused by lack of oxygen to the brain.

There are TONS of other symptoms that go along with this disease but the situation above is the most major one for me. Some others include :

* 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 disturbances
* Tremors


It is thought that I have probably had this since childhood but it became active in 2007 after I had myriad medical issues in late 2006 and 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 opened a hole into my sinus cavity. This needed to be repaired surgically but it was during Christmas and everyone was on vacation, plus I was scheduled for abdominal surgery in January. In January, I had surgery for endometriosis, bladder sling placement and hernia repair. After recuperating from that, the surgery to repair the hole in my sinus was scheduled for March. I had that surgery and everything went well until I developed Pericarditis (inflammation in the sac that surrounds the heart caused by an infection) in July. From that point on things began to go downhill very 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.

There is no known cure for my illness, all they can do at this time is treat the symptoms. I am currently going back and forth to Vanderbilt University Medical Center for treatment. They are the leading research facility in the world for this disease. I have been three times so far and I am really pleased with the staff there, especially my doctor. However, even with treatment, I am basically home-bound and bed/recliner-ridden as I can't walk very far without the fear of passing out and injuring myself.

In September of 2008, I had a port placed in my chest in order to receive IV fluids on a regular basis. This helps to keep my blood pressure at a more suitable level. The port was truly an answer to prayer because I have really poor veins. However, since having that initial port placed, I have had several severe bacterial infections that either originated in the port or ended up there. Each time, I have developed
acute sepsis and spent at least 7-10 days in the hospital. On 2 occasions I have had to have the port removed and be completely free of any infection before they could place a new port. I have written more about this in these posts:

SICK AND TIRED OF BEING SICK AND TIRED

MY MOST RECENT HOSPITAL STAY

ENDURING SEPSIS with Dysautonomia Part 1 of 2

ENDURING SEPSIS with Dysautonomia Part 2 of 2

I know this is a lot of information and a lot to digest. I am still learning about it and so are the doctors! I do not mind talking about it, so if you have any questions, please feel free to ask me. My family and I would also really appreciate your prayers. Even though there is no known cure at this time, we know our God is a BIG, BIG God and that through Him, all things are possible!

Philippians 4:13

Thanks for stopping by. I'd love to know you've been here so please leave a comment and let me know! See ya soon!

Blessings,

Teresa

P.S. For more interesting posts about my illness, my MUST READS are a great source of information!

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14 comments:

VKT said...

Dear Theresa,

This post really tore at my heart. I am sitting here in tears wishing there was something I could do for you. I pray for you throughout the day. Can I mail you a care package? I would love to send you books, tapes, anything you like.

Love to you my precious sister in Christ.

Marilyn (A Lot of Loves) said...

I'm sorry to hear you're having a rough time. I've read all of your dysautonomia posts and it sounds like a very difficult situation to deal with. Praying for you.

Crafty Girls Workshop said...

Hi,
I am stopping by because your comment was before mine on SITS today. What an amazing trial you have been through. Are you able to do things such as work on needlework or embroidery while you sit in bed? I like to work on some embroidery while I watch TV. I could put together some supplies to send you to start making some pretty tea towel or a pillow if you are interested. If so, please e-mail me anna@craftygirlsworkshop.com I'll be thinking of you and praying for you and the doctors to find some relief for you. Thanks for sharing about this amazing path you've had to follow.

Anna

Carrie said...

Thank you for visiting my blog today!.

Wow, I could not imagine dealing with an illness like that. My prayers are with you and I hope science can find a way to cure you of this.

suzette873 said...

Hi, I seen that you are a new follower on my blog so I came to check yours out. I'm sorry to hear your having a spell of a hard time again. It sounds like you go through a lot. I always think about how much I'm falling apart or how much I've already been thru and I'm only 36. But reading your post about your conditions makes me realize once again that there is always someone out there who might have it worse and I need to be thankful to still be here for my children and huband.
I hope you start feeling better again soon!
Oh, you left a comment about my daughters prom pictures. Those 2 are 15 and 17. I have 5 children andd my husband has 1. 4 of the 6 are girls!

Thanks for following,
Suzette

Magimom said...

Wow. What you are going through makes my woes with Fibro seem so trivial! Thank you for your heartwrenching post! I wish you blessings and love and send lots of prayers for healing. Stopping by from SITS, but I'm a follower now!

septembermom said...

Oh Teresa, I can't imagine what you must go through. You are just the loveliest woman. I send you all my hugs. Wish I lived next door...

Cathy said...

Bless your heart, Dear. I am praying for you. Nothing is impossible with our God. He is our hope. Blessings ~

Julie said...

Wow my dear, do you have your hands full. You will be in my prayers. I'm off to read more about your life and your family. I'm not sure if there is anything I could do to help you but if you read alot, enjoy beading or anything I would love to share what I have here. If you just like letters, e-mails and such I love chatting and writing and sharing and would love to get to know you and your family.
My son is graduating this year too. I couldn't imagine having to wonder if I'll be able to watch him graduate.
Okay, off to read more. I'm your newest follower, thank you for stopping by and following me. So cool to meet and greet new people and I have a feeling you will be teaching me lots and lots.
Take care my new friend. Have a good weekend and God Bless!!!

This is a Blog said...

Hang in there. I am so sorry about everything you have had to go through. My wife has been completely disabled from POTS and Dysautonomia for 6 years and I know first had how tough you have to be to deal with it. My wife has a blog too: www.wheredidigetthislemon.blogspot.com. I think it is always good for people with this disease to be connected. Hang in there, you are not alone!

Meg said...

You're in my thoughts. I'm always praying for you.

The connections I have with others who have POTS always make me wonder. For example, the dry socket and endometriosis you mention. It's like our bodies just get completely confused.

I want you to know that you always inspire me. And your blog helps me when I want to be angry with God.

Would it be okay if I linked to this post on my blog?

Cheryl said...

My sister has been ill for over 10 years without a diagnosis. She's recently been diagnosed with Dysautonomia with POTS as well as other complications. She can't even read emails, let alone write a blog. She has to use voice activated software to continue her work. This disease is horrible and has many guises.

My prayers are with you.

Tanya said...

First off, thank you so much for visiting my blog. It is really nice to actually have followers now :) Plus it will inspire me to really start blogging and sharing my life experiences.

Second, you are in my thoughts. I do not know what it is like to have a rare disorder myself but I do know what it is like to care for someone with a rare disorder as my daughter Makenna has many complex medical issues. I will soon be posting about them in my blog as I really need a place to share.

I will be following you now and your daughters are beautiful :)

Mary Frances Morris said...

You visited my blog back in April (Clothed with Dignity), but I haven't updated that thing in FOREVER! I'm sitting at Starbucks, procrastinating doing some school work, and decided to get on to my blog to delete it. I saw your comment and it made my day! (I'm no longer deleting it.) After reading your comment and searching your blog, I understand you are very, very sick. I am so sorry that it has taken me this long to get back to you and thank you for your sweet words. I pray that you are doing well, if not better than when you commented on mine.
Your encouragement is the reason I am keeping my blog. Thank you for being full of joy even when you have every reason to be sad and frightened.
Thank you, once again.
Mary Frances

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