Akgirl Posted January 23, 2013 Report Share Posted January 23, 2013 Hello, I was diagnosed with pots a couple of weeks ago after a TTT. my Hr. went up 40 in the course of 30 min. I had also been fainting, and a few of the times I would go into convulsions and when I would wake up,I would realize that I had lost control of my bladder I have been reading a lot about pots and I guess I am not sure if I have another syndrome as well. I have no or very little internal body fat encasing my organs. (any one else have this)? So I have had to have surgery to hold my kidneys where they belong. Also when I pass out it is 95% of the time when I go from sitting to standing and yawn and stretch with my head tipped back. Is this normal?? I am now on beta blocker and steroid and those gnarly brown stockings. This has stopped the fainting altogether!! But I am still just so so tired and always have a pounding tension headache. also if I stand in one place longer than 10 min. My feet literally turn purple. I am always cold and can rarely feel my toes because they are so dang cold. The neurologist said that bad blood circulation is not related to pots???? I am starting water physical therapy and I am hoping that will get me back on my feet soon!! I also have swollen lymphnodes in my neck a lot. I want my my life back so if any one has suggestions or thoughts, that would be awesome!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 23, 2013 Report Share Posted January 23, 2013 My first thoughts reading your post are for you to be evaluated by a geneticist for Ehlers -Danlos Syndrome and Chiari malformation. (Assuming they have run a basic EEG on you and ruled out any sort of seizure activity which should be done if you are having convulsions.) Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 23, 2013 Report Share Posted January 23, 2013 Well. some of it sounds like POTs and some doesn't. Convulsions/seizures should be looked into and, as far as I know, are not related to POTS. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted January 23, 2013 Author Report Share Posted January 23, 2013 I am just finished a 3 day veeg study and they said I have zero seizure activity. So i just got off kepra!! The doc says I have convulsive syncope and that if I control the pots then I control the sycope. When I stand still for about 10 min my feet turn dark purple and you can actually see the top half of my body turning whiter and the bottem have darker. Is this normal for pots? Or is it just that I have pale skin. Also is flunking the TTT enough for a proper diagnose? I live where we don't have acess to a large selection of neurologists, so unless I head out of state I am stuck with the one I have. Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 23, 2013 Report Share Posted January 23, 2013 I think you are describing blood pooling. This is definitely a symptom of POTS for some people. The TTT is one of the daignostic tools. Have you looked at the main DINET page for more info?Lots of luck!Abby Quote Link to comment Share on other sites More sharing options...
Angela Posted January 23, 2013 Report Share Posted January 23, 2013 i was first dx'd with siezures before pots, due to abnormal slowing on my eeg left temp. lobe, if you do a search on siezures you may find some info. I was on keppra for 3 months too, until my dx with pots. The doctor who reevaluated my eeg/suspected siezures believes the slowing siezure activity = lack of oxygen to brain. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted January 24, 2013 Author Report Share Posted January 24, 2013 Thanks!! Quote Link to comment Share on other sites More sharing options...
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