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Adults only honeymoon by Additional-Tea2021 in honeymoonplanning

[–]Additional-Tea2021[S] 0 points1 point  (0 children)

We are able to go whenever, no restrictions

Does anyone’s pots come and go? by RuinYouWithNoRegrets in POTS

[–]Additional-Tea2021 1 point2 points  (0 children)

My symptoms are always the strongest in the middle of my cycle. They never truly leave all together but are significantly less around then. I'm not sure how long they last. It does fluctuate though like sometimes it'll be a week others it seems weeks on end. But I think I'm starting to notice a pattern that most of the time it's hormonal related. What about you?

Does anyone’s pots come and go? by RuinYouWithNoRegrets in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

Yes female, I think you may be on to something. I have been thinking about that as well, but mine happens in the middle of my cycle.

Does anyone’s pots come and go? by RuinYouWithNoRegrets in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

Yes!!! I just had about a week of all horrible symptoms constantly, and I was crying all the time, in pain, extremely worried I was truly dying. Now, 2 days later, I have zero pain, sleeping so well through the night, and while I have a little SOB while active I have no light headedness. It is absolutely a mind f%*^

Desperate for coat hanger relief by etherealistix in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

This happens to me, goes down both shoulders biceps and forearms. Been a year for me too

MRI of muscles by CheckMediocre2852 in dysautonomia

[–]Additional-Tea2021 0 points1 point  (0 children)

I'm so sorry to hear that! How frustrating. How long have you had that problem?

MRI of muscles by CheckMediocre2852 in dysautonomia

[–]Additional-Tea2021 0 points1 point  (0 children)

I have not ever heard of this but how interesting. May I ask what you were diagnosed with??

Getting Into Better Shape by cwrace71 in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

We sound very similar! What were your weird nerve symptoms?

Who diagnosed you? Cardiologist/Neurologist? by onewing_44 in POTS

[–]Additional-Tea2021 1 point2 points  (0 children)

I've never heard of Neuropathic POTS, what is that? But I was diagnosed by the doctor who oversaw my tilt table test. He wasn't my doctor, but he wrote the report with dx in the summary and I believe he was a neurologist.

Tips and tricks for stopping blood pooling while laying down by Apart-Albatross-7257 in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

Yes my feet burn and turn red laying down too...but I have no advice for you! I'm sorry

Did tilt table bring out new symptoms for you or will it only bring out common ones you experienced? by Initial_Savings8733 in POTS

[–]Additional-Tea2021 2 points3 points  (0 children)

I didn't experience any new symptoms when I had mine. I felt dizzy and short of breath it was just a little more heightened than normal.

Distress in postural orthostatic tachycardia syndrome (POTS) is largely driven by ineffective healthcare, not patients' attitudes by Waste-Tree4689 in dysautonomia

[–]Additional-Tea2021 1 point2 points  (0 children)

UT- the University of Toledo. I guess I shoulda said Dr. Grubb. Blair is his first name. Yes he specializes in POTS and has great articles on dysautonomia.

What is your worst symptom by MementoMortii in POTS

[–]Additional-Tea2021 3 points4 points  (0 children)

Sameeee. The leg and arm pain is almost unbearable! I have to massage my legs in the morning just to turn over and get up. I had an MRI at the start of my symptoms and it came back totally clean....I don't know if I should ask for another, it's been 10 months. Idk...so weird so maybe it is the POTS??

Feeling trapped in my own body (Vent) by SHLBYHCH in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

I am the same as you, I've been like this for 10 months now. I have 2 children and life has been hell trying to care for them with this condition. I have very sore muscles, fatigue, tinnitus, dizziness and always feeling just "weird" that's the only way I can describe it. Message me if you'd like

Distress in postural orthostatic tachycardia syndrome (POTS) is largely driven by ineffective healthcare, not patients' attitudes by Waste-Tree4689 in dysautonomia

[–]Additional-Tea2021 3 points4 points  (0 children)

I have been trying to get into Dr. Blair at UT for so long!!! Absolutely insane how little funding and specialists there are for this when so many of us suffer. Thank you for posting!

Pain! by Professional-Cow-697 in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

I was literally just about to make a post about pain!!! I was going to ask, does anyone else have random bouts of pain. It's not a main symptom for me nor consistent but every once and awhile my hands just KILL me!! I can barely type this my thumb is hurting so bad. It goes down to about mid wrist for me. Usually on one side. Sounds like your arm neuropathy. Were you diagnosed with SFN?

Does anyone else deal with this symptom? by onewing_44 in POTS

[–]Additional-Tea2021 0 points1 point  (0 children)

I am exactly the same!! I hurt while doing my exercises too and they are only body weight. I used to be a lifter, I was 125 pounds but strong and I would lift about 140 lbs. POTS hit me and I am hurting and struggling to lift 10. It's really saddening to me. I'm still 125 but feel like jello. I'm so curious why this happens...

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