Symptoms of P.O.T.S

pots01

POTS is a little known disorder. 1 in 100 teens are estimated to have POTS. Like EDS, POTS is rarely diagnosed properly.

 

 

 

 

“In the past eight months I have learned much, but I also feel like I’m still in the dark some days.  My daughter is telling me of new symptoms (well, new to me, not her) often.  Her recent symptoms that come to mind are the pains associated with EDS and the newest (even to her), tremulousness  (tremors.)  Her headaches have increased somewhat, usually upon standing, or standing for too long, the anxiety level is elevated some days, subluxation of the joints (not completely dislocated), the stomach pain has been almost daily lately (but we have found Tums to work for her), and depression.  Her cardiologist has suggested Midodrine, which is a vasoconstrictor.  It works by stimulating nerve endings in blood vessels, causing the blood vessels to tighten, thereby increasing blood pressure, which in turn should help with some of the symptoms she has, such as:  blood pooling in limbs, headaches, brain fog, dizziness, near syncope (fainting),  and maybe other symptoms that are related to dilated blood vessels.  At this point, I have not given her the Midodrine.  I am still unsure of it.  We are waiting to see a geneticist who will determine what I am quite confident I already know; that she has hypermobility type EDS.  Ehlers-Danlos Syndrome is a group of inherited connective tissue disorders which is caused by a missing protein in the connective tissue (collagen.)  Collagen increases elasticity in the skin, muscles, ligaments, blood vessels, and organs.  In the hypermobility type of EDS, my guess is that the missing collagen is in the ligaments which help hold your bones together.  Keep in mind, this is research that I have done on my own.  The problem I have with some doctors is that they are too hurried and don’t seem to have the time to explain things, so we are left to figure things out on our own.  Thank God for the internet and all those who put the information out there!

Since this is a genetic disorder, we have had some clarity.  My husband has EDS and POTS, as does my son.  My husband does not always exhibit POTS symptoms, but seems to be more ‘POTSy” in the hot summer weather.  We got a glimpse of it when we had a couple of hot summer days last week.  So all of the symptoms that I am noticing in my daughter, he and my son both have as well.  It is overwhelming to say the VERY LEAST!  Looking forward into the lives of my children, there is hope.  I see my husband; he can function, he tries to work, he has bad days and not so bad days, he is alive yet lives in so much pain.  The hope is in that there is research being done.  EDS and POTS are not well known, and I don’t think they are as rare as we may think.  EDS has only been known since the 1960′s and POTS has just come to be known in the past 15 years.  Imagine what we will know in another 10 or 20 years!  There is hope.”

POTS is a very challenging disorder. The following web site link provides more information about POTS.

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