History Of Dysautonomia; Later Onset Of Severe Pots - Cause Unknown

[BarbaraC]

I first developed dysautonomia with POTS when I was 15 (1999) and was diagnosed 2 years later. After getting on the right medications, making the correct lifestyle changes, and developing the proper treatment plan, my illness stabilized and remained unchanged for the next several years (which I understand to be fairly common for the teen-onset). I still had mild symptoms even with treatment but was able to lead a fairly normal life.

Last October at 28, I suddenly developed severe, debilitating hypovolemic POTS. Thanks to my past history, it was diagnosed very quickly at the Mayo Clinic in Phoenix. The doctors however can't explain what caused this sudden onset of the new symptoms. At this point, my symptoms should have continued to be stable. I did not have any physical trauma (car accident, surgery, etc) or emotional trauma before it happened. It just came on very suddenly out of nowhere.

Has this happened to anyone else? Does anyone have any idea what could have caused this? I am under a new treatment plan and working to be the healthiest I can be, but I am just so worried that this could just happen again in a few years with no warning.

Thanks! Barbara

[looneymom]

Sorry this has happened Barbara. Have you ate anything different hat could have set this off? New job or different routine. Has a new medical condition developed? Like something that really does not make you feel any worse but it's just different. I wish I could be of more help. My son has POTS and his doctors have been trying to get his under control. It's good to hear of someone that had it start as a teenager and then became more stable after a couple of years. That gives me hope for my son. However, it concerns me that after your condition became stable, you are having to deal with it again.. I hope you get some answers soon. Please keep us posted.

[corina]

Hi Barbara, welcome to the forum. I'm sorry your POTS got worse. Like you I don't know what causes my dysautonomia, I hope you will find an answer so that you will be stable (and on the up) soon!

[MomtoGiuliana]

Have you been tested for other conditions that might have aggravated POTS? For example thyroid disease? I ask b/c when I first started to develop thyroid disease, POTS came on. I was diagnosed with thyroid disease but the dr could not explain my actual symptoms--which later turned out to be POTS (instead I was diagnosed with thyroid disease and anxiety). I did not have any symptoms of low thyroid.

[BarbaraC]

Thanks for the replies ladies! The only big change that occurred prior to this "new" onset of POTS was an onset of Premature Ovarian Failure (POF). With the POF, I have basically gone into early menopause (I'm 29) and the doctors at Mayo did say that (since it isn't hereditary) is likely caused by a problem in my hypothalamus (like the dysautonomia). I underwent egg retrieval in January (so I was on a really high dose of a lot of hormones), because my egg quality will only continue to get worse. (Unfortunately the eggs were already in bad shape, and we weren't able to create any viable embryos.) That's been my only idea of what could be the cause - the large hormonal fluctuation plus the emotional toll of knowing I couldn't have my genetic children (my husband and I will adopt). But by October when I had the recurrence of POTS, I was really starting to move on and get back to my normal self. So, I don't know.

LooneyMom, I definitely started to feel a lot better once I was out of my early-mid teens. And from my understanding, about 80% of teens have no symptoms later in life. Only 20% will continue to have stable symptoms. For me, finding the right doctors and getting on the right treatment plan was the biggest help. When I first got sick, the doctors said I would never graduate high school, and I went on to not only get a bachelors degree, but also a masters. I hope this gives you some hope for your son's recovery. I remember that it was actually harder on my mom watching me go through it all than it was on me. I was very lucky to have a mom who looked for answers and stayed active on dysautonomia forums like this one. Your son is lucky to have you.

[looneymom]

Your mention of hormones has caught my attention. Has MAYO done any research in this area? I wonder if this is the reason why in the early teenage years, it is hard to get this POTS condition under control when hormones flare up.

Barbara, keep up the positive attitude. Hope you are able to adopt soon. Children are a blessing even when they get sick with POTS. You have given me hope as many others on this forum have encouraged me to keep looking for answers. Keep us posted on your condition and hope you feel better soon.

[corina]

Barbara I'm sorry you are dealing with the early menopause. I don't want to give you any hope just want to let you know that I was diagnosed with that too (30's) but for some unexplained reason a few years later everything came back to normal. This is what makes me think that my POTS/OI has to do with hormones (I struggled during teenage years and later on in my 20's as well). I am on octreotide now and doing much better (not cured and by far not as well as healthy people, but my quality of life has improved lots!).

[BarbaraC]

Thank you Corina for the hope! That would be such a blessing! Hopefully as my POTS gets better one day at a time, my hormones will begin to improve too.

[ramakentesh]

Sorry to hear about your experience.

I developed pots at 26 and it disappeared for years then came back much worse at 32 after a bad stomach infection.

people on forums who report sudden onsers and random fluctuations tend to improve.

[diabeticgonewild]

There is a test (not commercially available) that links autoimmune ovarian failure with autoimmune dysautonomia.

It is called the anti-peripherin antibody. Mayo is trying to get a patent on the test, as we post.

http://www.google.com/patents/WO2011082416A2?cl=en

[ramakentesh]

Yes I am very interested in the autoantibodies against Peripherin mainly because other researchers implicated these and similar autoantibodies in small fiber neuropathy.

I wasnt aware Mayo were trying to patent this assay. They were also patenting a treatment modality that increases potassium ion channel activity at sympathetic synapses to presumably improve vasoconstriction.

Thanks for the info.

Off the top of my head I believe it was this study that mentioned the possibility of a role for anti peripherin activity in small fiber neuropathy:

http://www.ncbi.nlm.nih.gov/pubmed/23478869

[BarbaraC]

Thank you for the info on the antibody test! That would be so great to find the link! I will definitely ask my doctor at Mayo about it at my next checkup. I saw a geneticist there right after I was diagnosed with the POF and she said that the two disorders are too rare not to likely be connected. We just don't know what the connection is. So the test would be a great way to get some answers!!