** 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, July 9, 2009

DYSAUTONOMIA...
STORY OF MY ILLNESS

Blood circulation:  Red = oxygenated  Blue = d...Image via Wikipedia

(FYI - As you may have noticed, this was written in July 2009. Not all information written here is still the same but it does give a good description of my illness.)

A lot of people either don't know I've been sick or don't know very much about my illness. So I thought I'd take this opportunity to write about it and try to explain it.

I have been 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 in our area have never even heard of it. I was very blessed that the cardiologist I was referred to knew what it was and recognized the symptoms right away.

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 over 175 syncopal episodes since August '07! In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously unaware of like 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 changes in posture which causes extreme dizziness and 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 is supposed to 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 pooling in my legs and abdomen. Thus my heart beats way too fast to make up for the reduced blood volume transferred by each beat. This usually results in my blood pressure dropping incredibly low and then I pass out due to lack of oxygen to my brain. Once I am laying on the ground, I eventually regain consciousness because the oxygen is then adequate again. A lot of the time while I am unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. I have had several tests and have been told it is not seizures, it is just something my body does due to 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 (this is the short list!) :

* Dehydration (this is significant for me and makes my b/p lower)
* Major fatigue and weakness
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat or cold
* Major gastrointestinal issues
* Sleep disorders
* Small fiber neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever
* Noise/light sensitivity
* Visual disturbance
* Tremors
* Pain

It is thought that I have probably had this since childhood but it became active in 2007 after I had a host of 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-socked 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 quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi.

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 most of the time as I can't walk very far without the fear of passing out.

In September of last year (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 an answer to prayer because I have really poor veins. However, in April, I developed acute sepsis and spent 5 days in the hospital. I eventually had to have it taken out and another one put in at the end of May. You can read more about that in my post, MY MOST RECENT HOSPITAL STAY.

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. I would also appreciate your prayers. Even though there is no known cure, I know our God is a BIG, BIG God and He can do anything!

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



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33 comments:

Marsha in Texas said...

Thanks for the refresher course on your illness, T. I forgot a lot of the symptoms.

God's speed!

Teresa said...

Thanks for stopping by, Marsha. I truly appreciate it more than you know. You are a wonderful friend and I love ya girl!

t

Evi said...

Hi Teresa,
We saw your husband and daughter at community tonight and thought of you. We are praying for you. Pretty blog, it looks like a scrapbook page.
Love,
Evi

Julie M said...

Hey T! Your blog looks great! I appreciate all the info on your disease. It'll make it easier when I try to explain it to other people.

Take care!

elise said...

You continue to be in my prayers, Teresa... I admire your courage and steadfastness in the midst of difficult circumstances.

Love ya.
elise

Amandasaurus said...

Wow, that's really something. The most amazing part of it all, though, is that you manage to maintain hope and optimism in spite of your illness - and that shows!

Happy SITS Saturday Sharefest! Take care.

Love,
Miss Rex

Teresha and Damon said...

I don't know what to say except that you are so brave and I am praying that you continue to have the strength to deal with this until a cure or quality-of-life improving treatment is found. :)

Casey said...

Wow, thank you so much for sharing all of this information. I am so sorry that you and your family have to go through this. Just know that God will get you through this.

Jeanne said...

Teresa,

It's great that you are increasing awareness of dysautonomia (with postural orthostatic tachycardia syndrome in particular since that's the type you have).

I'm sorry you've had so many syncopal episodes. That is a great deal of them! :(

The way you next explained the autonomic nervous system is helpful for those unfamiliar with it.

The symptom list you have here includes all of the symptoms I have read about elsewhere but it also contains other symptoms I haven't seen before.

Are these symptoms your doctor has attributed to dysautonomia/POTS or have you found this info elsewhere? I'm just curious because there are so many issues listed that I have myself.

I didn't realize you have endometriosis! I have had it for 27 years now. (I'm 40 years old). I've had 7 surgeries thanks to endo.

I had a brutal tooth extraction last December. I was fortunate not to have an infection afterwards, though. (It was abscessed prior to the extraction but my antibiotics did their job).

I am so sorry you are home-bound due to the dysautonomia/POTS. That must be incredibly frustrating.

I am very curious about the prevalence of dysautonomia.

My primary care physician told me, "it's not as uncommon as you might think".

Since I blogged about it (last week... with a couple more posts to come), my blog has been absolutely inundated with traffic to the dysautonomia posts!

Also, in the few short weeks since my symptoms hit me suddenly, I have connected with a large number of people online who have some form of dysautonomia (POTS for some of the people).

I am wondering if this is one of those conditions that has a reputation for being "rare" when it's actually fairly common.

It makes me wonder if the problem is lack of training for the "average" physician on properly diagnosing and treating it.

Over the years, I have encountered several illnesses that get written up as "rare" when they are not actually rare at all.

Sometimes I wish I were an epidemiologist and that I could calculate the prevalence of such an illness.

Thank you for sharing your story and helping others!

Jeanne

Elle Bee said...

Theresa, I had never heard of this illness before. Thank you for sharing your experience. I think you are a very strong woman to be able to endure all this. God IS a big God and I hope there's a cure soon for this!
Elle

aforestfrolic said...

What a scary thing for you and your family to have to go through...not knowing exactly what's going on, etc. I'll keep you in my thoughts and prayers. And thanks for sharing about a disease that is not well-known to make people aware of it.

Jamie :)

•´.¸¸.•¨¯`♥.Trish.♥´¯¨•.¸¸.´• said...

wow I have never heard of Dysautonomia it must have very significant affects on your life.
I will pray for you too.
Godspeed you and surround you with angels every day to watch out for you.
I am sorry you have been 'touched' by this. Any chronic disease is debilitating and causes much stress and isolation.

Jen said...

Wow Teresa, you are a Trooper.

I'm sorry to read about your illness, it's something I too have never heard of.

I believe you will prevail because of your Faith, Courage and Positive Attitude.

May the white light of the Holy Spirit surround you.

Blessings & Hugs
Jen

Yaya said...

I'm sorry you have to go through this.

Thank you for posting this. It now makes me understand on a greater level what my friend Jeanne (ChronicIllness.Com) goes through. (She is also my 'In Real Life' friend).

(((Hugs)))

Jenni Saake (a.k.a. InfertilityMom) said...

{{{hug}}} So glad you have also discovered Rest Ministries. Thanks for dropping by my blog. Other than the fainting, it sounds like you and I deal with many of the same kinds of symptoms with CFS. (My blood pressure can drop when I stand and I "flunked" my tilt table test, but I rarely pass out, though my heart works really hard a lot of the time.) But the rest of the symptom list I can really realate to and I'm sorry you have so much on your plate. {hug} Looking forward to getting to know you better and sharing this journey in prayer. I also have endo. {hug}

the girl in the green scarf said...

i've been looking on ur blog for some days and i had to read this post for at least 3 times!!!..I am so sorry for ur illness, I know it must be so difficult to handle it, but I want you to know I put u on my prayer list.*hug*.I know God can make miracles and I know He can strengthen you(Philippians 4:13).Be strong and don't lose your faith in Him.
God bless!<><

Jennifer Martin said...

Jeez you've been through a lot! I'm so sorry that you're going through all this, but you have to remember that God only gives us what we can handle. Your positive additude will carry you though this.

Reaching out from SITS,
Jennifer at stiffniffles.blogspot.com

Mommy Bear said...

You will be in my thoughts and prayers. I'm so sorry about your illness. You are a brave and strong woman and I admire that.

Farmgirl Paints said...

Hi Teresa,
Thanks for stopping by and commenting on my blog. Wow I learned alot about you from that medical desciption...you poor thing. I can't even imagine the challenges you face in a day.

Good for you blogging and using your story to reach others. I pray that they will find ways to help you lead a more normal life.

Dr John Peragine said...

My daughter was diagnosed with POTS this year. It is great to know we are not alone.

http://tinyurl.com/m3nowb

Sharon said...

Hi Theresa! Thanks for sharing your story and the details of your struggle. From what I'm reading, it sounds like you've been thrown some major curve balls, but are learning to make the most of it! You go Girl!

I'm grateful for the internet and all the new friendships it leads to... I can imagine you feel the same way!

God Bless you!

stipeygirl75 said...

Hi Theresa, thanks for the very informative blog! I am interested in learning more about dysautonomia and POTS. I've had arrythmias, tachycardia and low BP most of my life. So far I've managed it with beta-blockers and just being careful to drink a lot of water, eat a lot of salt, etc. I wish you luck with your current treatments!!!

I'm a full-time mummy... said...

Hi Teresa,

Yes, our God is a magnificent God. Nothing is too big for Him to handle. I pray that your faith in Him will not waver and for Him to give you strength and comfort in times of pain or when you're feeling low.

Thanks for visiting my blog from SITS and I'm your follower now as well! Stay in touch, ok?

God bless you and have a blessed weekend! :D

Chelle said...

I will be keeping you on my prayer list. My heart goes out to you for having to endure so much.

Juli said...

Hi! I just found your blog and I'm always looking for other people with Dysautonomia. I was diagnosed in 2003 at the age of 15 and have battled symptoms very similar to yours my entire life.

I just wanted to say hi and let you know I was following your blog now. :)

mooneyequalsmc2 said...

I am visiting over from my own blog that you commented on. Thank you for this very educational post about your disorder. I do not know you very well (yet!) but it seems as though you do not allow your disorder to define you...I will add you to my prayers and also my blog feed!

mindy~

Eileen said...

Hi there!
Just reading your post and finding that a LOT of younger people, esp. girls are being dx with this. I also have these symptoms, minus the fevers and have been told I have CFS and now they say is also untreated past Lyme. I have had these weird symptoms since early 20's. THEN they said was thyroid being 'off' a little. Nine years ago a virus the whole family got brought me to my knees. I have not been the same. I am like you, esp. the past 15 months spent mostly in bed. No driving the past few years due to dizziness and my legs just going out on me.

It is so scary. I have 6 kids, three still at home. My 17 year old is now showing signs of the same and we are just getting her to see some medical help.

It is not fun to be so disabled with something they really don't understand. I had gone back to school as an adult with 3 kids and was working when the bad relapse hit. It IS a hard road.

I am so happy that you have gotten a dx and are getting help/treatment. I cant ride for long in a car as it "shakes me up" and symptoms get worse. Just wondering if this happens to you too?

Bless you on your path to better health! I admire that you can do blogging while dealing with this. NO WAY could I keep everything straight in my mind enough. Looking forward to reading other posts of yours!

Joni said...

Hey dearest,
I just came across your blog this evening, and I too have been given the same diagnosis. I have EVERY symptom on the list, but had NO CLUE that these were ALL Classic symptoms of POTS. I would LOVE to talk to you more about this because the doctors around here not only do not know what this is, but have no clue how to treat it. Even the dcotor who diagnosed me does not take me seriously when I tell him about the issues I am experiencing. It would seem my POTS is only getting worse and worse as time goes on. But I just don't know what to do anymore. There are days that I can sleep for 12 hrs, be up for a few and go back and nap for another several hours and then turn around and sleep another 12 hours over night. Ugh. I also have type 1 diabetes, kidney issues, asthma, with a history of grand mal seizures among a host of other health issues, and I JUST don't know what to do anymore. and would LOVE to talk to you about it if you don't mind. I would be sooo appreciative to talk to somebody who understands, and might be able to guide me in the right direction for some help. God Bless and lots of prayers for good health to you!

2RealEyes Hop3 said...

Hello, Reading about what you are going through brought tears to my eyes. I too was extremely sick in 2007 and I've seen a very dear loved one (and best friend in the world) in excruciating suffering recently. I know that many people don't understand the pain (in all respects) that we go through in our lives, but I just wanted you to know that there are those out there who do (like me). I was blessed enough to have it pass, but many times I thought it would go on forever. Now, you say there is no cure, but anything is possible with God. At the least, your symptoms may ease up. Thank you for sharing your story; I admire you for your strength and courage. I will keep in my prayers as well as ask others to pray with me for you. In the meantime, keep looking up. He's the only Answer! Whenever you feel that no one gets it, remember that our Lord does. For all non-Christians, you're missing out on the best thing that could possibly happen to you! Here's to Him, who accompanies us when we're lonely, keeps us safe when we're scared, and loves us as we don't deserve it!

A 2 Z said...

Hi,

It just looks like my 20 year old has POTS. We just saw a cardio that recommended that she drink salty water and nothing else. What doctor or hospital in the US do you recommend to go to? I live in Canada but I travel a lot to the US. Thanks for your blog. Now everything is so clear!

A 2 Z said...

Oops, I forgot to leave you my email: annemarie_zinc@hotmail.com.

I think its better to contact me at this address than on my blog!.

thanks,

Anne-Marie

Jennifer said...

All I can say is "wow." This is a disease I have never heard of before. But it sounds like it affects everything you do--literally from standing up to sitting down. I am glad I visited--your burden is bringing glory to Christ. May He bless you, give you strength as you live each day.

Majo said...

teresa
i´m a 21 year old woman from mexico and i suffer dysautonomia too :(. Just like you i had a very happy life and then i was diagnosed! since then everything has been slowly falling apart. i´m so sad because i follow every instruction doctors give me and just when i start felling ok something happens and i get worst. I just don´t know what to do anymore. It makes me feel a little better than 5 more girls in my class have it, but still i don´t wish it to anyone. I would just like a real cure for me to be able to do all the things i used to and really live! Because today i eider feel bad or don´t want to do anything because of the fear of felling bad.

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