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Posted

Hi all! Hope I'm posting this in the right place. I have a strong suspicion I have pots. I have had odd symptoms for years that no one could figure out. Shortness of breath, palpitations, GERD, strange numbess in various areas of my body, weakness, stomach pains,  dizziness, chest pain, pink/purple splotches on legs when standing for long periods etc. My dizziness/ racing heart has been especially prevalent lately...I have started measuring it and do see increases of 30+ bpm when standing. We recently moved country and our health insurance isn't set up yet so I have to wait to go to the doctor...wondering if any of you could give me some insight in the mean time. 

1) Can these symptoms come and go? For instance, I had the numbess in my hands and face a couple times over the years, one of which was during a time of extreme stress...everyone told me it was just anxiety. Some days my heart seems to race more than others...I don't always feel it racing but feel a general feeling that I can only liken to when I was heavily pregnant and my body was working very hard to pump the blood. This is how I felt yesterday, even doing light housework. Today I felt better though. Is this normal for this condition? 

2) Do you think these symptoms could be caused by anemia alone? It is possible that I am anemic right now. I have documented that I have a racing heart when standing...I guess I'm just not sure if I go to the doc they would just blow it off as anemia? Or would anemia present differently? 

I also have type 1 diabetes (well controlled)...if that is relevant.  Part of me really wants this diagnosis so I can put a name to what has been plaguing me over the years. I have been blown off so many times that "it's all in your head". Even if nothing changes with the diagnosis it would feel good to have the validation. My husband is convinced I have it and has started calling me Mrs. Pots after the character in Beauty and the Beast ;)  

Thank you all for reading if you go this far :)

Posted

OK - first of all you need to tell your physician that you need to be evaluated to rule out dysautonomia. You may want your blood work to include a CBC, that will tell you if you are anemic. POTS will get worse with anemia, so just a low hgb does not mean you do not have POTS. Getting orthostatic VS done at your visit could give a clue about dysautonomia. The doc might want to order a Tilt-table-study to confirm POTS or other autonomic issues. --- Yes - for many POTS patients symptoms fluctuate.  ---- Please be specific when describing your symptoms to your physician, if you are concerned about POTS ( and you do have some symptoms indicating you might ) then he needs to rule it out. This process will show if you have it or not. If your doc is not familiar with POTS then he may not be able to test for it.  Whenever I need to see a new doc I make sure I ask if he knows hoe to reat dysautonomia before I make the appointment, this includes family physicians. Good Luck - I hope you will find answers.

Posted

Thank you for the replies! I'm kind of worried it will be hard to find a doctor here that knows this condition...any tips on the kind of specialist that would be most likely to know? Cardiologist? Neurologist? It doesn't help that my Spanish isn't very good (yet). My husband can speak it pretty well though. 

Posted

I do not know what country you moved to but usually cardiologists ( specifically Electro-Physiologists ) know about POTS. They see patients with this because of the Tachycardia. They also perform the Tilt-table-test. In the meantime you may want to - Drink fluids, increase salt, green leafy veggies and red meat to increase iron and combat anemia ... try to avoid heat and prolonged standing, wear compression stockings .... bets of luck, let us know how things go. 

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