Snowtite

The symptom that has effectively taken me out of my life has been the fainting/near syncope. I have not been able to make it longer than 2 weeks without an episode in over a year.Don't drive,work or go anywhere alone. The tachy feeling and fatigue are close seconds . Wow it is amazing to me still how individual symptoms can vary and what we can learn to live with!

Hang in there Sheri Lynn!

I am somewhat of a newby to POTS myself and can relate so much to

many of your symptoms including hypersomnia, weight gain, tachycardia

low BP, and the most fun of all fainting. . I remember that

desperate feeling of just wanting to know! Sounds like you re on the

right track .

Don't give up and remember to keep fighting for yourself- especially if your cardiologist

is wishy washy about diagnosing you. The cardiologist I see now is wonderful

and very knowledgeable about POTS and the like. However, I went through

3 cardiologists and a neurologist before I was directed to him. It was only

four months but seemed like an eternity.

Please let us know how it goes:)

Glad you are reaching out!

Wow,

What a great topic and reminder for us all! Ok what I am going to

work on.

1) embrace the wheelchair and stop being too proud to use it

whenever and wherever it's needed- even the public bathrooms

In a tight squeeze

2) my children still love me even if and when I have to be mommy

from the floor. They have adapted so much better in many ways

to my health changes. I need to imitate them.

3) an amazing and supportive husband is worth more than 3

doubting family members- thank and kiss him everyday- even when we re both

exhausted.

Thanks Katy for starting this and everyone else for honest

responses. I needed this tonight ! )

Love to hear everyone's perspectives. In ways, yes , it ***** to be us

but I love that we re not alone.

I too am most symptomatic in the morning, after a decent meal,

after standing or walking very little and yes.. Before the period.

Recently pinpointed top 3 triggers are rainstorms( or a cool front that

involves barometric pressure drops), dehydration and the week before

my period. My cardiologist is fighting to help me get through these

without crashing which for me means a day or 2 in bed with severe

fatigue, low BP that Midodrine can sometimes help and the inevitable

Crawling to bathroom or eat and passing out in between.

Also yes I have noticed that my hr is always lower when I am feeling

worse. On good days heart rate range is 90's to 120's . On poor days

its in the low 70's and maybe hits 100 if I move too quickly. I find that

strange too.

So sorry to hear you re so backed up! You may try aloe Vera juice. A close friend shared this with me after having to give her young child enemas with little results .. For some reason this worked instead. Hope this helps!

Hello. I am brand new to DINET but was diagnosed w/ POTS and EDS a year ago. I typically deal with low BP on the days I can't seem to stay upright but occasionally have elevated BP after or while coming out of an "episode" as we call them around my house. However, frustratingly enough I have had normal vital signs even during Pre- syncope during an echo at a cardiologists office in which I drooled, went numb on one side and could not speak or see.

For what's that's worth I have been there on the feeling totally sick and having normal- or only slightly elevated vitals.

Finally my very awesome new cardiologist who diagnosed me confirmed that chest pain is quite common in potsies( our words not his) and has to do with the heart pump being overworked from blood pooling. I have no other medical explanation in my case for my pain other than this but it can be quite bothersome on days when I push myself or am upright for too long. In my almost year and 1/2 of living w/ POTS I have seemed to only learn more about how elusive it can be and so very specific to each patient. Arrr! Thanks for posting! Learning a lot here )