New Member - Possibly Have Dysautonomia

[Nauthiz]

Well im hoping some other members can shed some light with me, i have had for the last 2 years ongoing random health problems. My cardiologist suggests i have dysautonomia based on my symptoms. I recently lost 40lbs do to sickness and am a 5'9 125lb male(gah). Here are my symptoms if anyone can relate;

1. GI problems, LPR/GERD

2. Urinary pain/frequency

3. Lower side of blood pressure

4. Random Trachycardia, very noticeable when going from standing to lay or vice versa too quickyl(doesn't always happen but it does frequently)

5. Chest pain on the left side that comes and goes for periods of time

6. Headaches

7. EXTREME fatigue at times

8. Difficulty keeping a sleep schedule

9. Weakness

10. Occasional problems exercising / difficulty gaining weight

11. Shortness of breath.

Now i have had several CT's, Treadmill test, EKG dr said heart is perfectly fine. So he suspects Dysautonomia, but i cannot afford a tilt table test at the moment. Can anyone relate or give me some advice? Thank you

[janiedelite]

You can have your doctor give you a "poor man's tilt test" in his office. Just lay flat quietly for a few minutes and have him take your BP and pulse. Then stand and have him take your BP and pulse every couple minutes. If your heartrate increases by 30 beats or more on standing, you have POTS. If your BP numbers drop more than 10-20 points, you probably have orthostatic hypotension. When I my doc told me I probably had autonomic dysfunction, I bought an electric BP cuff at Walmart and did this myself at home and brought the numbers in to her. I did it at the same time for 3 days in a row so she could see how consistently abnormal my numbers were.

[Rachel]

Hello and welcome. I hope you can find the help and information you need here.

If you can't afford an official tilt table test, you can do a "poor man's tilt." To do this, you lie down quietly for 10-15 minutes. Then take you heart rate and blood pressure. Next, stand up and stand very still. Take your heart rate and blood pressure again after 1 minute, 5 minutes, 10 minutes, and 15 minutes (if you can stand for that long). The results of that will give you a good idea of whether or not you have dysautonomia. With POTS there will be a rise in heart rate of 30 beats per minute or more. With NCS your blood pressure will drop.

Rachel

[Rachel]

While I was typing up my post, Thankful beat me to it!

I echo what she said.

Rachel

[ajw4790]

Hi,

Welcome! I second (or third) what has been said. Also, make sure if you haven't look into the TTT and to how much it will be and if the hospital/clinic has any financial aid available to help pay for the testing. Also, you may be able to find a cheaper place to get a TTT if the original place you are going to is very expensive. Based on that the cardio believes POTS is the diagnosis and your symptoms (which sound like POTS) you could if the dr. recommends start treatment for POTS to see if it helps you. In other words work to treat the symptoms and don't worry as much about a formal diagnosis. What does your dr. suggest treatment wise?

If you still are unsure about the diagnosis, look through the board here at past posts and see if you feel that you are in a similar situation. Also, check out the DINET website for common symptoms, stories of people etc.

[Nauthiz]

Hi,

Welcome! I second (or third) what has been said. Also, make sure if you haven't look into the TTT and to how much it will be and if the hospital/clinic has any financial aid available to help pay for the testing. Also, you may be able to find a cheaper place to get a TTT if the original place you are going to is very expensive. Based on that the cardio believes POTS is the diagnosis and your symptoms (which sound like POTS) you could if the dr. recommends start treatment for POTS to see if it helps you. In other words work to treat the symptoms and don't worry as much about a formal diagnosis. What does your dr. suggest treatment wise?

If you still are unsure about the diagnosis, look through the board here at past posts and see if you feel that you are in a similar situation. Also, check out the DINET website for common symptoms, stories of people etc.

Thank you for the poor man TTT suggestion. I will try asking my cardiologist to try this, i did not get alot of time to understand what he was saying. But he said my heart was fine and dysautonomia seems plausible. I think for how many things are wrong with me, it makes me sense to be systematic.