Crazycatlady

6 minutes ago, StayAtHomeMom said:

BTW pizza was my biggest trigger for a while. 

Pretty sure it might just be the salad... lots of fiber... maybe IBS related?

what was it about the pizza ? Do you know? That’s a total bummer !

Every time I eat a medium or large salad my symptoms are super triggered.

stomach cramps, dizziness etc.

man you would have thought i just got done standing for a long period of time.

anyone else triggered by salads? What foods trigger you?

Hey guys 

any amount of alcohol (like a shot) makes me feel absolutely horrific the next day. Even if I drink a good amount of water and increase electrolytes. Is this common? 

I feel like my social life has taken a toll. No one understands that no, I can’t have even just one drink unless I want to feel horrific the next day. Most people just recount a bad hangover but my limbs/toes/fingers feel weird afterward!! I always feel pressured to drink and after a drink last night I am finally accepting I will never drink again. Just not worth it. I don’t fit in at work because I don’t partake in their drinking sessions I live in a state where alcohol is VERY much apart of the culture so people do take it weird if I am not drinking.

anyone else have issues with alcohol and feel their social life is affected? 

Hey guys 

Juat got DXd with POTs last month. Around this time since it’s been getting cold, my fingers have been turning white/stinging/other classic Raynaud symptoms.

Is this related to dysautonomia? I tested negative for autoimmune issues (although my moms side has a lot of them)..

just curious to hear your stories 

14 minutes ago, bombsh3ll said:

Epinephrine is meant to be low, and having readings below the threshold is unlikely to be clinically significant. It is good in a way as it helps rule out a phaeochromocytoma (although actually most of us would probably prefer an operable cause!). Your Ne rise is consistent with POTS (possibly Hyper dep on your center's criteria).

I am on the waiting list in the UK to have supine and standing blood catecholamines drawn if I can get health board funding. The problem is I can only stand (or tolerate tilt) for a minute or two, so the doctor didn't think this would be long enough to meaningfully detect a change. Can I ask how long you were upright before your standing bloods were drawn? 

I hope your results point you in the direction of some helpful treatment. 

B x

 

Thank you ! I appreciate the education. This is all new to me. 

Yes, the Tilt Table Test was rough. It was a total of 30 (I only lasted 25) and the blood was drawn 15 minutes in and before they injected me with a drug to increase my heart rate. 

If you can only stand to stand (punny...) a minute or two shouldn’t that be enough?? I hope you get moved on the waiting list for some answers 💕

1 minute ago, StayAtHomeMom said:

I couldn't get my doctor do run this test for me in a way my insurance would pay for it. What has your doctor said about the results? It seems interesting. 

Nothing yet! I’ll update once I get what he says. Just kind of freaked out about the defiency..

im sorry to hear that your health insurance won’t cover the test 😕 Always a complete bummer when the system won’t work. Where you able to get other tests done atleast?

Hey guys need some help. My epinephrine is very low in both laying down and standing.

laying down:

Dopamine 21 \ 0 - 20 range

Epinephrine <10 \ 10 -200

Norepinephrine 170 \ 80 - 520

tilt Test standing

Dopamine 20

Epinephrine <10

Norepinephrine 638

thabks Guys.. would love to hear your results

30 minutes ago, StayAtHomeMom said:

What was your starting HR laying down? Was the doctor that diagnosed the POTS a specialist?

Yes he was! Dysautonomia unit.

my testing heart rate was 70 today. It shot Up to 90-100ish during the first 15 minutes. They injected me with (IDR the name, but speeds your HR up) and it was only at 115

thanks for the response !

Hey guys -

Had my TTT today and although I did not reach the heart rate or increase needed to fully get the POTs diagnosis, I Still am getting Dx’d with POTs ?

 my blood pressure did drop to 54/41 and I was super close to passing out until they tilted me back. HR was 115 at the highest 

i am going to be on Midodrone and still have POTs diagnosis. Getting a full autonomic workup and autoimmune blood panels done.

Wow ! Didn’t realize how supportive this community was. Just found it on Google.

thank you all for sharing your stories. They did help  glad to know I’m not alone.

we can all get through this day by day !

Yup. Have always had a feeling (even as a kid sometimes) that I needed to take a yawn but couldn’t catch my breathe.

last year went and got breath tests done - they all came back fine and it was deemed a nervous tick / anxiety 🙄

Going through a Dysautonomia DX finally right now.

youre not alone  idk what it is yet, so I can’t give you that but I do have shortness of breathe feeling! 

Waiting to get diagnosed... (Nov 12).

my legs sometimes feel fuzzy (best way to describe it... not really fully numb) and light? Even when I’m lying down. I think it might be related if I push myself at the gym or walking too much.

anyone else get this? Is it related to POTs? Nerves ?

thanks 

Have a lot of symptoms of POTS/Dysautonomia. I am waiting to get my tilt test scheduled. I don’t get in to see the neurologist until March!!! So I’m kind of freaking out.

If i “fail” my pots test (no real changes in blood pressure or HR) I have to get an MRI done

here i I am freaking out I won’t feel normal again and I’m going to die (haha... over reactive I’m sure). I think I just feel the worst since it’s my time of the month...

ugh any advise ? Any bits of hope?

thanks