Pots Occurring In Multiple Unrelated Members Of The Same Household

[ks42]

I developed POTS about a year and a half ago, very suddenly, out of the blue, while in grad school. A few months after I got diagnosed, my roommate at the time came down with POTS-like symptoms; even stranger, she displayed the same EKG abnormalities as I did (they couldn't find a cause for either of us, but both of us had previously normal EKGs). She moved out, but her symptoms continued, and she eventually got diagnosed with dysautonomia and POTS.

My spouse now has POTS as well, with autonomic neuropathy - the doctors have been pretty sure of this for awhile, but we just got official confirmation via full autonomic testing at Mayo. None of us had POTS or dysautonomia in our families, and we were all previously really healthy (with the exception of my prior lyme disease).

My spouse and I (not sure about the ex-roommate) have suffered from fevers, chills, and other infectious-type symptoms since I first got diagnosed, even though blood counts don't show elevated (or depressed) white counts, and blood cultures are negative. Our primary care doc is sure it's not a coincidence, and the cases must all have some common underlying cause, but she's stumped as far as where to go from here. We've done a ton of testing for parasites, viruses, lyme, mycoplasmas, and autoimmune disease, all of which has been pretty much negative. The other frustrating part is that none of us respond to the typical POTS therapies. Granted, fluids and salt help, but meds like florinef, beta blockers, alpha/beta blockers, ivabradine, mast cell meds, even compression hose have made us worse instead of better.

I know this sounds bizarre. We've been tempted to write it off as coincidence, but it's just too weird. It would be interesting to find out if anyone else has ever dealt with anything like this before. Have you ever seen POTS occur in clusters? I did find a very old comment (in an unrelated thread) by someone who said he and his wife developed POTS at the same time, but that's all I found.

[Bigskyfam]

Intriguing. I was dx out of the blue. Stepdaughter has lupus and shows similar sx and my daughter shows similar symptoms. I really think this is the tip of the iceberg. I hope with research we will get more answers instead of head scratching. I too do better with fluids salt and mild exercise small amt of iv fluids as well. Meds mess me up.

[angelloz]

Wow! Very interesting. I do not know of anyone else near to me that has pots but your reactions to medications mirror my own. I was diagnosed with mast cell disorder but like you antihistamines made me much worse, in fact causing a few trips to the ER. The Mayo diagnosed autonomic dysfunction and tested one auto-immune type but that was negative. I have low blood volume so drink all day long. That does help some. I also have SFN and reduced sweating.

A mystery for you all to be sure! Many people think it all started for them with a virus so who know???

Good luck and welcome aboard!

[statesof]

Have you asked to the Mayo specialists what they thought about your three cases? It would be interesting to see if anyone would do a case study to find if there were similair causes or if it is all just coincidence as hard as that would seem to believe.

[Bigskyfam]

I feel like I'm on the gameshow family feud... Good answer, good answer (clapping)

[ks42]

Biskyfam - lol

statesof - yes, that's an excellent idea, and actually, we just started contacting some of the major autonomic clinics. The mayo near us can't take our case - I believe they are just too inundated with patients - but the Rochester Mayo said they might, so we're waiting for the final word. Only downside is it would be a year wait, and a trip clear across the country (might be worth it though). But, we're still contacting places like Stanford and are considering putting calls in at places like Vanderbilt and Cleveland Clinic as well, even though they're farther away. Hopefully someone will take an interest!

[Katybug]

Have you all been checked for mold and other exposure toxicities?

[ks42]

Katybug, it's funny you should mention that. The apartment we were living in when I got sick had previously had a known mold problem. I actually had to sign a waiver that I was informed of previous mold problems when I moved in. I was never really told if the mold was gone, either, I guess I just assumed it had been remediated. Sigh. Live and learn, I guess. We did have the apartment tested when I got POTS and the levels of mold were pretty high. Not sure about chemical exposures. We all worked or went to school on a college campus undergoing massive construction on old buildings, so we could have been exposed to just about anything I guess. We moved out ASAP, but now our current house actually has some water damage (and I think a decent bit of mold in the walls), which we're hoping to have tested soon.

I do think we need to figure out how to go about diagnosing mold and chemical exposures. We've asked our doctors, but they don't seem to know how to proceed. We were thinking it might be worthwhile to find someone who specifically deals with environmental stuff.

[Katybug]

I know I've read in the past that mold exposure has been an underlying cause of autonomic dysfunction. Your primary might call the CDC and get information on exposure testing that can be done. Also, heavy metal exposures can cause autonomic dysfunction. You might try finding a doctor who specializes in occupational medicine in your area. I believe they know how to do testing for exposure toxicities.

There's a doc on the Eastern Shore of Maryland by the last name of Shoemaker who specializes in Lyme and toxic exposures. I know the last time I heard a member say they were trying to get in to him, he had a long (year and a half) wait list but maybe he could consult with your primary to get some testing started? Worth a shot, the worst he or your primary could say is no.

[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.

[ks42]

Katybug, thank you!! I'll definitely look into testing for mold and heavy metals. I'm sure my doc will be willing to call the CDC for more info, and I'll definitely look up Dr. Shoemaker and see what kind of info I can get.

Poncha, that's really interesting. My spouse and I also developed cough variant asthma out of the blue right around the time that I developed POTS. Neither of us had asthma before that. I'm definitely going to do some research on Real Time Labs and see if testing through them might be an option. Thank you!! Also, I'm really sorry to hear about your experiences and difficulties, it sounds like you've had a rough time. I hope things get better for you!

[TCP]

Yes, it sounds like an exposure to something that could be the link and it's not been picked up.

[ks42]

Thanks everyone for suggesting possible exposures. I've been looking for an occupational med doc, and have found a Shoemaker-trained mold physician in my area thanks to all of your suggestions, so we're looking into having some of the mold testing done ASAP. Additionally, my spouse and I both recently went to a new cardiologist whose mind was blown by the similarity of our symptoms. He sent us to a medical toxicologist. We (and our doctors) have to jump through a million hoops to get the actual appointment set up, which is going to take awhile, but once we get everything in place, I'm told the appointment will be extremely thorough in looking for environmental exposures and potentially even overlooked infections.

[corina]

I'm so sorry ks42, this sounds quite serious. I hope you will find answers asap!

[kellygirl]

Before diagnosing me with POTS the EP ordered testing for exposure to heavy metals and over 200 different types of toxins. Neurology also ordered testing on autoimmune disease and degenerative diseases... all which were negative.. in my case my POTS is idopathic. If you and your family and roomate have not been tested for heavy metals or toxins, I would discuss with doctors in ordering those tests. It seems strange.

[Katybug]

Ks42,

So glad you are getting somewhere with the search for answers. Sounds like the docs are taking this seriously!

[ks42]

Thanks corina - we're staying positive and hoping for some answers at some point down the road!

Kellygirl - that's awesome that you had a toxin workup. I haven't so far - I had the autoimmune and degenerative disease panels, but no toxin testing or anything like that. I'm definitely thinking that's something we need to push for.

Thanks Katie. Fingers crossed that something comes of it... I know it's very, very hard sometimes to find a cause for POTS, so we're both aware we may never find anything. But we're staying hopeful anyway. At least now I feel like we're getting something done

[sue1234]

I'm pretty sure we have mold in our home. But, with no extra income to spend to have it tested and fixed, there's not much to do. I know, many would say how can you afford to live somewhere with mold? We just don't have any extra income to move or even rent. Our home is paid for.

So, now I wonder about mold. But, I live where I'm sure many homes have mold, as I live in the south, with lots of humidity. I think if that was the case, we would see so many, many more people with POTS-type issues, and I don't know anyone that has my issues. So, I have no clue.

Does mainstream medicine look for mold toxicity? Or, just holistic-type doctors?