Poncha

I was exposed to toxic mold about 8 years ago in a house that me and my family rented. No one else got sick except me, but I immediately developed asthma with chest pain, shortness of breath, dizziness, headaches, cognitivie issues, skin rashes and hives. I received treatment for about 2 years after moving out of that house for the asthma. I thought I was fine, but then I started having neurological problems a few years later such as extreme confusion and forgetfullness, and then the dizziness gradually returned along with episodes of presyncope which became more and more frequent until I could no longer function or work. Now I'm on SS disability. The cause of my POTS has yet to be found, but it's always been in the back of my mind if the exposure to the mold caused my POTS. I have a FB friend who was exposed to mold also and devleoped POTS. She said she had labs done by Real Time Labs out of Texas that tested her bloodwork for mold toxins. She had her PCP write up the order for the mold screen, but I'm not sure how she went about getting her bloodwork to the lab in Texas though.

I agree with Natops. There are very few people who find the underlying cause of their dysautonomia. I have yet to find mine. I've only been sick for about 2 years and have symptoms that very in degree pretty much every day. I've seen numerous specialists, and yes my POTS doctor has referred me to countless doctors and for countless tests, and yet I sitll do not know the cause of my dysautonomia. But that doesn't mean you shouldn't try to find the cause. The key to successful is finding the casue. Many people have lyme, or diabetes, or some other autoimmune process going on that is the culprit. Finding it is difficult. Treating it can be even more difficult. Keep fighting for an answer, even if it takes years and don't ever give up.

I've seen both an autonomic neuroloigst and cardioligst at the Clinic before and had the autonomic testing done at the Clinic last year. I had several tests in one day that started early in the morning and ended with me seeing a cardiac electrophysiologist and discussing my results. I didn't have the tilt table that day, but had one previously and also had one later. The tests I had were the sweat test, the blood volume test, the hemodynamic test, and autonomic reflex testing. A month later, I had a 2nd TTT and was then diagnosed with Hyperadrenergic POTS. Later in the year I tried to do the sweat chamber test, but couldn't tolerate it and I also had a skin biopsy. After all this was done, I also underwent several different types of stress tests. A few months prior to my autonomic testing, I also saw a neurologist in the Syncope Dept there who ran a battery of blood tests on me looking for an underlying reason for my dysfunction. He also had my catechlomines tested (I forget the name of the test) where I had to lay down for a while, get my blood tested, and then sit up for a while and have my blood retested. I've also had a 24 urine test done when I was a patient in the hospital, as well as at home too.

I'm new to this forum too, but these suggestions might also help you. Make sure your doctor explains your condition to you and how it may affect your life. If your doc puts you on medication, make sure you understand what it is and why you're being prescribed that particular medication. Also ask about any side effects you should be aware of and ask whether it's okay to take over the counter meds such as Tylenol or cold medicine with your prescriptions. Also ask whether you should be taking any vitamins or supplements and make sure you understand why they want you to take them. Lastly, keeping a notebook of your questions and notes will help you remember what you want to ask your doctor at your visits. I also print off articles from the internet that I want to talk to my doctor about and put those in my notebook too. Good luck.

I've had the blood volume test at the Cleveland Clinic, along with the hemodynamic test done at the same time. The hemodynamic test measures the function of the heart and circulation. I attached a couple of handouts they gave me explaining the procedures below. Blood Volume Test: https://www.dropbox.com/s/xl5bt75efw2z56v/What%20You%20Need%20to%20Know%20About%20the%20Blood%20Volume%20Test.pdf?dl=0 Hemodynamic Test: https://www.dropbox.com/s/mh5g8bvoiam26e9/What%20You%20Need%20to%20Know%20About%20the%20Hemodynamic%20Test.pdf?dl=0