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stampingamy

Pots In Isolation

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Hi. I am still figuring out my dx. I was diagnosed with POTS about a month ago after a TTT. I am doing daily BP monitoring, raised the head of my bed, drinking pedialyte at night, and wearing knee high compression stockings. No prescription meds yet other than the SSRI I was already taking. I go back to my neurologist with all the BP readings and for an EMG in a few weeks. I am reading a lot of stuff from people here and it has been helpful. I am curious though how many people have just POTS or does it typcially seem to occur with other things? Does it eventually lead to other conditions? I am noticing that many of you are dealing with so much more than POTS. Does POTS usually occur with other conditions? Is it unusual to have just POTS?

My symptoms seemed to get worse or came simultaneously (vision, dizziness, brain fog) and my primary doctor made good referrals and I was diagnosed pretty quickly at the Autonomic Lab at University Hospitals in Cleveland. The tech doing the test told me his job was to prove that the symptoms were all in my head, but not in my imagination. I liked him right away. It feels good to have a reason for all the things I have been dealing with. But I am curious to get more info about whether it is unusual for POTS to occur alone.

Thanks!

Amy

It is later in the evening and I have read some of the responses below. Thanks for the info. I am not so much looking for what caused POTS, but if it is unusual for it to occur alone. ALL information is good to have! Thanks.

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hi amy i was diagnosed with pots in august but have had problems since april....i have alot of bad symptoms like lightheadedness headaches off and on sweats while standing or walking feeling off balance the obviously major heart rate increase upon standing...the doctors dont know why i have it either so far ive had tons of blood work seems normal mris ekgs echocardiogram eeg seen two neuros...i dont knwo why i have it i didnt have any other health issues before april i was fine so your not alone.. i am 23 and was a manger before and active now i cant work i try to do things here and there but ya i noticed it seems that alot fo people on this forum figured out why they have pots but i dont have a clue it can happen////from what ive read it seems that in people with decent health alot fo the time its casued from a virus attackign the system or hormonal....back problems injury ///you got me

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Hi,

It took 30 years before I got my diagnosis and I have other health problems going on. So I am not a pure POTS case.

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answers to most of you questions are available on the dinet site at

http://www.dinet.org

specifically, causes that are known are here:

http://www.dinet.org/what_causes_pots.htm

Nina

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(quote)-

I am reading a lot of stuff from people here and it has been helpful. I am curious though how many people have just POTS or does it typcially seem to occur with other things? Does it eventually lead to other conditions? I am noticing that many of you are dealing with so much more than POTS. Does POTS usually occur with other conditions? Is it unusual to have just POTS?

But I am curious to get more info about whether it is unusual for POTS to occur alone.

Thanks!

Amy-( end quote)

Amy,

I have loads of other stuff going on besides the POTS.

It started about 6 years ago when I noticed I was fatigued a lot. Then the pain started. I was eventually diagnosed with fobromyalgia and CFS.

It all got much worse about 3 and a half years ago, when I started having hypoglycemic attacks.

My brother had died of a heart attack 6 months prior to this. I was out to dinner with him at the time. Everyone tried to blame the trauma of for my health. Thinking it was all in my head.

However, I was diagnosed with the Hypoglycemia, and then Anemia.

I do feel the trama might have made my already poor health worse.

2 years ago I saw a CFS spcialist. He diagnosd me with POTS

After that I was also found to have P.C.O.S. and then,

IBS.

So as you can see this is all quite puzzling..what's the cause ..what's the reaction?

I have some theories but no big red sign pointing the way.They all seemed to be linked to each other, but how and why I don't know.

I do wonder if this all might have to do with my Menstural cycle changing .

I was always regular. the 25th day of the month. Then 4 to 5 days of bleeding.

The year this all started, 6 years ago, my cycle abruptly changed. It became very irregular.

Before this point I had always been very healthy.

I wonder about early Menopause since there is a history of that in my family.

I know a lot of women going through Menopause develope POTS.

I have also wondered about the insulin connection. Since POTS is sometimes found in people with Diabetes.

My father is a type 2 diabetic, so it is in my family. Also PCOS, is thought to be caused by insulin resistance. Since I have a blood sugar problem, I wonder if that could be the cause for POTS.

As far as POTS occuring alone, obviously not the case with me. LOL

babu

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I am by no means an expert, or a doctor, the pattern seems to be that pots can lead into other things being wrong health/mentally/emotionally wrong with patients. Anytime you have to change your lifestyle, put all different kinds of meds into your system over a period of time, other things can start to go wrong, I would imagine. Other times, it seems as if pots was discovered "first," then they can sometimes find things that are an underlying cause of getting pots, but that might not be as common. I've only been diagnosed for a couple of months and all of a sudden, all my docs are saying I have this, or that, lets test you for this or that, or taking this medication will cause this or that, so we need to treat you for that as well, and I was in almost perfect health condition before getting symptoms of this.

Like I said though, I am not an expert on the topic by all means, this is just what I've observed. :P

~Sarah~

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As far as I know, I only have POTS and autonomic dysfunction (POTS is just a specific type of autonomic dysfunction). I have symptoms that don't quite fit into POTS but that aren't a different disease, either.

Amy

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B) My ep doc said that as with me, alot of pts with pots can also get cfs. I started having sx of cfs about one year after the pots started.

Donna

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I was dx with Pots with Gastroparesis as a result. Dr. Low @ Mayo said that I also have Chronic Fatigue. I don't really buy that. I think, in my case, this is just what happens when a POTS patient gets too tired. I work full time and have a University teaching position @ night. I don't have the rash and fevers assoc with CF- so sometimes MDs attempt to bundle these, but for me: I'm just POTS girl needing some quality recliner time!

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