Newbie: Does Any Of This Sound Familiar?

[lotusflowersusan]

Hello everyone! I am new here and I wanted to take some time to introduce myself and hopefully get some feedback.

I suspect that I have had some sort of dysautonomia going back to childhood, but am just now aggresively pursuing a diagnosis at the age of 40.

First, I am wondering if anyone else has had similar experiences:

Throughout my life I have had odd reactions to what other patients tolerate easily. Some have written me off as too sensitive or been in some other ways demeaning. As I seek a definitive diagnosis and have discussed my travails with family and friends, my mother reminded me that as a child (and still to some extent as an adult) I did not tolerate blood pressure checks well. They would make me nauseous, light-headed, and just plain ill feeling. Did not think much of it at the time, but seems to be part of a pattern.

I have always been very sensitive to smell, and can be easily overpowered to the point of nausea, vomiting, and headache if I am confronted with some strong aromas. I remember this as far back as grade-school age, probably 9 or so.

I had my first grey-out when I received a booster shot prior to entry to junior high. It came on 5-10 minutes after the injection, but I was blinded after getting up and exiting the clinic, and my mother accused me of messing around as I tried to feel my way out of the waiting area.

My first faint actually came when I was fitted for contact lenses as a teen-ager (again, several minutes after the actual event). It was totally unexpected on my part. I have had faints or near-faints on numerous occasions, frequently, but not always, related to a medical situation. MDs generally blow this off and mutter something about vasovagal syncope.

I have since explained to people that I can have a fainting reaction to anything that my body interprets as a violation to its integrity. To me, dysautonomia seems a more likely explanation than a 'fear of needles' since I don't know exactly which situation will bring it on. It seems more like my body is not reacting correctly to an unexpected stimulus. Something out of the norm. Just wonder if anyone can help shed any light on this.

In 2004 I was diagnosed by an infectious disease specialist as having an active and recently acquired Epstein-Barr infection. Ever since I have felt like a mess. I have lost approximately 80 pounds, which I needed to lose, but can't explain what I did to lose it. This is what has primarily peaked the interest of several of my physicians. Episodes of near-fainting have escalated since this time.

It wasn't until the EBV in 2004 that things seemed to get really out of hand. Despite being significantly overweight, I had a regular and vigorous exercise program. I had a thyroidectomy in 2001 and a routine evaluation of thyroid hormones indicated I was VERY hypothyroid (which would normally cause weight gain, not loss). For a while, my symptoms would be written off to the thyroid or EBV issues. But here we are, and instead of improving, I feel I am getting worse. My symptoms are varied, but the most distressing are the heat intolerance, dizziness, near-syncope, muscle weakness, some pain, and difficulty breathing. I have been diagnosed with IBS and have frequent GI pain, and acid reflux. I have also had, throughout my life, the tendency to fidget a lot and it seems somewhat uncontrollable unless I concentrate entirely on Not doing it.

I have consulted with various specialists aside from my internal medicine/PCP and the infectious disease specialist: rheumotology, neurology, endocrinology, cardiology, gastroentorology, gynecology, even ophthalmology (corneal ulcers). I was hospitalized overnight in October with chest pressure and shortness of breath and a very mild elevation of troponin. I received a fairly thorough cardiac evaluation at that time that indicated my heart is in good shape. I have since had a pulmonary function test that indicated the same about my lungs. I was written off by some as the episode being due to anxiety. Having a psychiatric history, I had my therapist and psychiatrist forward all of my psych records to my current internist who is coordinating my testing at the Nebraska Medical Center. My reason for including my (fantastic) psychiatrist, was that she felt my symptoms are NOT due to my psych issues, and I wanted to nip that notion in the bud with the internist. That strategy seemed to do the trick. The internist actually felt my shortness of breath was not likely a lung issue or even anxiety, but was related to my muscle weakness. I see a neurologist to evaluate this issue on March 4. I have seen this particular doc before and like him. I would like to approach him with my ANS suspicions when I see him and could use some guidance.

Due to my medical phobia, I get very anxious in a medical setting, and many docs are willing to write off ALL symptoms or problems to the anxiety that I exhibit in their presence. The phobia developed as a result of my earlier dealings with docs with the faints, near-faints, etc.

I know this is lengthy, so thanks to those who took the time to read. This looks like a fantastic forum and I look forward to hearing from and getting to know others out there who have been there.

[Ernie]

Hi,

Welcome to our little world.

Here are some interesting links that you can read to understand and share the knowledge with family and doctors:

Overview of POTS

http://www.dinet.org/pots_an_overview.htm

Symptoms

http://www.dinet.org/symptoms.htm

Mechanisms (what is happening with your body while you're symptomatic)

http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm

Causes of POTS

http://www.dinet.org/what_causes_pots.htm

Detection of POTS and other autonomic dysfuctions

http://www.dinet.org/how_is_pots_detected.htm

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

Myths

http://www.dinet.org/myths.htm

What does the research have to say

http://www.dinet.org/research.htm

[lotusflowersusan]

Just wanted to share with everyone that I seem to be making diagnostic progress, and have a TTT scheduled for April 15. I am excited and a bit nervous. My internist is unfamiliar with dysautonomia and was unaware that the teaching hospital where she works even had an autonomic laboratory. But she was fascinated with the info I provided, and she had no problem making the referral.

[corina]

that is good news, congratulations!!! i can understand that you're both excited and nervous. a diagnosis will help you, it won't cure, but it makes life easier.

good luck and try not to be too nervous (although that is easier said than done, i know),

take care,

corina

[DaddyPaul]

I'm very new here too, but welcome and congrats on your recent progress!

My first intuition about what you described is that it sounds most like vasovagal sycopal episodes. You further describe it beautifully later in your post when you said "a fainting reaction to anything that my body interprets as a violation to its integrity." Needle sticks are probably the most common triggering event for vasovagal reactions, but really any situation where you feel threatened, particularly by some type of invasion of your body, can precipitate one. I'm not even totally sure you must be cognizant of the invasion for a reaction to occur because it is generally a stress induced reaction to some stimulus. Sometimes stress can exist below our conscious threshold and perhaps that variety is even the most dangerous.

Your pre-existing propensity for hemodynamic events will almost certainly tend to cloud the issue for any of your physicians and it sounds as if you've already seen that result. But all doctors must face this type of issue anyway and strive to focus on YOU and YOUR particular case and symptoms. It is difficult to find a doctor who will actually LISTEN to what his/her patients are saying about their own bodies. If you can find one who is truly able to listen, then he or she will also more than likely be able to think beyond their OWN preconceived notions. It is frustrating beyond measure when it becomes all too apparent that your doctor's mind has slammed completely shut with the force and finality of a prematurely formulated (and likely erroneous) diagnosis.

I pray that we all find the answers we all seek as quickly as possible regarding our ailments and how to cure or live with them.

[Tessa]

Welcome on board!

Yes, it sounds familiar to me... Very familiar.

Try to avoid being too nervous for the TTT test... (I know, it is difficult). But you will see that it is not complex and easy to follow.

Take care and keep us updated on your TTT test

Love,

Tessa

[ajw4790]

Hi!

Welcome! Hope the TTT goes well and you get answers to help you out! I do see some similarities with your symptoms to myself, but overall it is also somewhat different. So, I do not have any great advice, besides continue to pursue answers and there are drs. out there that are not helpful with this. Don't let them get to you and the pursuit for answers. Feeling these symptoms on a regular basis is not "normal".

I hope you find answers and relief!

[sarct]

I am also quite new as well, and I have had problems since childhood. As far back as 8 years old. Much if what you mentioned sounds familiar, but quite different too. I hope these tests they will be performing can help you.

Like you, I have lost quite a bit of weight. When I gained the weight I stopped having episodes. I actually had them so infrequently that I thought I had grown out of the problem. Since the weight loss they have come back with avengeance. My doctor said it is because I have less blood volume now and I have less pressure put on my body.

It Makes me sad since I feel like I was better off overweight. I should be enjoying my weight loss. Not living like this.

[lotusflowersusan]

Thanks to everyone who took the time to read and reply to my post. The more I read, the more I see myself in the stories of others. It is interesting how many different ways there are for ANS issues to present, but all-in-all, the stories are very familiar. When my internist started looking at the list of possible symptoms for dysautonomia, she remarked that I reported almost every single one. She has been most interested since I started seeing her about my constant movement and fidgeting. We discovered that dys can also explain that uncontrollable urge to move constantly, possibly due to low blood volume. I also sweat buckets and run a consistently low body temperature.

I told her that it seems like I spend a lot of conscious effort trying to maintain homeostasis, and she acknowledged that this seems like a very strong possiblity.

Thanks so much! I will let you know what I find out.

[pat57]

Your term, "trying to maintain homeostasis" is perfect- I will have to use that too.

[Mrs. Burschman]

Good luck, Susan!

Don't be nervous about the TTT. It's safe and easy. The medical personnel will watch you very carefully and lower you back down if you feel too ill.

It definitely sounds familiar. My also-awesome psychiatrist (whom I don't see anymore) also said it wasn't psychological and helped me get an appointment to see an autonomic specialist. You wouldn't believe how beneficial that has been for my psychological health to learn that something is physically wrong with me!

This is a great forum. Hang out here, and you'll be an expert in no time!

Amy

[lotusflowersusan]

Hi All! Just an update, I had my testing yesterday, and posted an entry on my blog with a somewhat detailed description of the tests that were performed for anyone interested: Susan's Blog

[Megan]

I had the alien abduction jokes too! Just to add, I also sweat a lot (I always say 'like a man') and run a low temperature. And I fidget all the time, since I was little. I've since realized that when I fidget it helps keep my blood moving. If I don't fidget, my hands and feet go numb (not enjoyable). I hope your test results show something (even if it's not a good thing, it's always good to know!)