Eds And Pots

[Chaos]

Seeing all the info on hyperadrenergic vs high flow/normal flow/low flow POTS etc. I'm just wondering if people with Joint Hypermobility Syndrome/EDS tend to fall in any one of those catagories in particular? Or do we have all the various types represented in our general membership? Or is EDS/POTS a catagory unto itself?

[ramakentesh]

Generally peripheral poolers or high flow POTS - it has also been associated with normal flow POTS and betareceptor hypersensitivity.

[DizzyMe]

Thanks, I have EDS/POTS and have wondered the same.

Mel.

[hensor]

I'm another with both, and I don't know what type of PoTS I have, just told that I have it and it is linked to my EDS.

[Chaos]

Thanks!!

[Stace915]

Hmm... I am another one with POTS and EDS and now I am wondering, all my doctors including the wonder Dr. Grubb, have always just told me POTS, they haven't told me a specific type. Is finding out more specific information in anyway helpful for treatment, as far as different drug therapies are suggested for different strains of POTS?

[jolineshope]

Hmm... I am another one with POTS and EDS and now I am wondering, all my doctors including the wonder Dr. Grubb, have always just told me POTS, they haven't told me a specific type. Is finding out more specific information in anyway helpful for treatment, as far as different drug therapies are suggested for different strains of POTS?

Hi, I have EDS type I, II, and IV with cross-over variations of other forms. I also have dysautonomia. I was diagnosed with the hyperadrenergic dysautonomia form, so for me my BP and pulse go really high when standing, sitting, or doing just about anything. Then when I lay down my BP and pulse drop very low, so I am the opposite of most other people. For me it made a huge difference to get the right diagnosis because before I was given the right Dx I was being treated with drugs for people who suffer from orthostatic dysautonomia. Drugs like midodrine and florinef, unfortunately, those drugs just made me worse and pushed my BP up into the the 200's over the mid 100's and sent my pulse into the low 200's. I was taken to the ER several times with numbers in the stroke range. It would then leave me worse then I was before attempting these drugs. My docs would then go on to try SSRI's and the nearly fatal SNRI's. These drugs set me off into what is known as a "seratonin overload" or also known as an "autonomic storm", which did end up causing me a TIA and left me fighting for my life in the NICU. At that point my doctor contacted Vanderbilt and I was sent there within days. After several tests it was clear to Dr. Biagginnio that I had the rare type known as hyperadrenergic dysautonomia. I was then put on two different kinds of BP drugs, hydration therapy and cardiac rehab therapy. It would take me 9 months before I would be able to sit-up and then stand-up with out fainting or sending my BP through the roof. The reason I fainted was not from low BP but because my heart rate would go up into the 200's and remain there long enough that it would cause my heart to beat and pump so fast that it could not adequetly pump blood and oxygen through the heart and into the lungs and up to my brain, so for lack of oxygen due to the rapid heart rate I would black out.

Anyway, I have been doing great for the past two years but recently for no appearant reason I have had a down fall and I am suffering again with extreme BP's and pulses from the littlest activity, and then at night I suffer from extreme low BP's and pulse. I will be going back to Vandy for help again, but I thought I would let you know that it did make a difference for me to have the appropriate Dx of dysautonomia. As far as there being a specific type of dysautonomia related to EDS, I do not think that there is one , just like I know not all people with EDS have dysautonomia. My form of EDS is a geneticaly inherited and my sister and brother and mother all of have this form and so do several of our chidren and cousins, many of my relatives and all of my mothers family have died from type IV EDS in there early 50's. My mom has survived an aortic dissection but is now dealing with two more aorta anuerisums and has had several strokes, yet only me, my sister and two of my three kids suffer from dysautonomia and I am the only one with the hyperadrenergic form of it. So, I think we are all individuals when it comes to EDS and dyautonomia. I hope this helps.

Jolie

[Chaos]

Jolie- Wow! That's quite a history you have. Glad you were able to get some help at Vandy. Sure hope they'll be able to help you again. Thanks for all the info. It's very intersting. Amazing that your mom survived an aortic dissection.

I see the geneticist the end of June for testing for EDS. I know I have JHS but not sure about EDS.

With all the different research going on, it seems like you can get a specific diagnosis and then someone else comes along and says that type doesn't exist. Ahh the joys of living with DYS are just too numerous to list.