Has anyone been diagnosed with POTS?

Has anyone been diagnosed with POTS?

This is usually a symptom of EDS and has a lot to do with heart rate, fainting and migraines, even nausea. It is sometimes called dysautonomia.

A MyChronicPainTeam Member said:

I most definitely have heard of it!! I get the symptoms a lot but I don't bring it up with my doc he already thinks I am crazy. I would get no where. I do see him in 10 days or so. I have no idea why he wanted to see me a month after I already had seen him. He tells me nothing. I plan on printing out the record I have of him saying he doesn't know why I can't breathe when I am laying down but I have several psychiatric diagnosis. I may write a letter to him and ask him to read it latter and bring that up and poke around my medical records some more to find other things he may have said. Haha, I've become a rebel rouser but I will stand up for what I believe is right or wrong. I've graduated from the school of hard knocks. I think for sure I will bring up to him I think I have chronic fatigues, haha, I'll keep you posted on THAT one!! Think it'll come with my oldest sister writing up what she has seen from me

posted about 3 years ago
A MyChronicPainTeam Member said:

Oh, my Specialist's name is Dr. Blair Grubb in Toledo, Ohio. He is fantastic! Anyone who thinks they may have this. Start a chart with your Blood pressure and pulse laying, sitting and standing. Especially if you feel dizzy or faint when you stand up or after standing awhile ... Like standing in line for something.

posted about 1 year ago
A MyChronicPainTeam Member said:

I read an article on Mental Floss today. They think they may have found a gene that is responsible for Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). This should put them on the radar with doctors. So hopefully, (fingers crossed here) we will get some forward movement on relief and eventually a cure!

posted about 3 years ago
A MyChronicPainTeam Member said:

@A MyChronicPainTeam Member Do it Do it Do it!!!! Keep me posted😊

posted about 3 years ago
A MyChronicPainTeam Member said:

@A MyChronicPainTeam Member I am so sorry these problems came up.I wish you could see the doctor sooner. My feet were hurting and it seemed forever but it was maybe a minute. I could not walk through one store because it hurt so much. I went to a podiatrist and was prescribed orthotics and it helped so much. Make sure you tell the doctor everything. Sometimes I have to write a list to take to my doctor. Anyway I hope you havery a mouthpiece to use with the CPAP. Recently I had blood work and I have an infection. I am really against taking antibiotics because I am afraid when I am older the antibiotics won't work anymore. I decided to take the Cipro but it's really hurting my stomach. My next appointment is Nov 29th with the doctor. Also I feel so hot but no fever. What can a person do??? I think just accept other medical problems are going to come up and try to deal with it and the Chronic pain.Try to get some sleep and rest. I have trouble sleeping too.Hugs for you😊

posted about 3 years ago
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