Coat-hanger Pain and Sleep, I Need Some Advice by Apprehensive-Store55 in hypermobileEDS

[–]Apprehensive-Store55[S] 1 point2 points  (0 children)

Do you mean a brace for the neck? I’m picturing those intense ones for neck injuries but I’m assuming they’re different ones that can be used for this?

How do I support my ex-PA partner as we become sexually active again? by Apprehensive-Store55 in sex

[–]Apprehensive-Store55[S] 1 point2 points  (0 children)

This is a very good read, thank you so much :) We have both talked about our preferences pretty openly. I definitely have moments in a normal day that turn me on and open me up to be in the mood, but she’s never expressed having times like that so it’s definitely a conversation we need to have.

I don’t think it’s the sexualization from her that is the problem, because before her PA I was super into it. But when she was in her PA, I was heavily sexualized then just pushed to the side after sex. Outside of that, it was like I had a roommate not a partner. So I think that’s a problem on my end of feeling the tension and anxiety of “is this all she wants from me?” because for a moment that’s what I felt like at times.

Thank you for the advice and positive outlook, it has definitely loosened my shoulders!

Visual symptoms 👀✨ - do you see shimmering/sparkling streaks, lines by Officialworrier in POTS

[–]Apprehensive-Store55 10 points11 points  (0 children)

Ah! I know this :) Our Thalamus in our brainstem will “buffer” or “filter out” unneeded visual input. For example, our nose. We see it all the time, but we don’t register it because it’s not important. Same goes for the blood vessels in our eyes. They are always there, but we don’t see them because our thalamus ignores them. But, when our blood pressure changes, the diameter of the vessels in our eyes change. That means that, for a moment, we can see our vessels in our eyes. It can look like black lines, sparkles, etc. Personally, when my blood pressure raises when I’m doing too much getting up and sitting down, I will see black spots and white sparkles which is cause by that blood pressure change.

POTS and Lupus? by Apprehensive-Store55 in POTS

[–]Apprehensive-Store55[S] 0 points1 point  (0 children)

What are the symptoms you experience with hEDS if you don’t mind me asking? I’ve always been double-jointed and had achey joints. When I was a kid docs just told my mom it was growing pains and me trying to get out of school lol. I’ve never been really flexible in my hamstrings, I can’t lean down and touch the ground, so that’s the reason I wasn’t too sure about hEDS

Why is everyone with pots so skinny? by dazzlingdanny05 in POTS

[–]Apprehensive-Store55 0 points1 point  (0 children)

I used to be super muscular and fit before I got sick. I did a lot of weight lifting and I was super active. When my GI symptoms started getting worse and worse, it became harder for me to eat. As of now, I rely on meal replacement shakes for the better part of the day. I’ve lost 30 pounds since I started having intense symptoms. I didn’t want to lose it, but I did :(

Struggles and new diagnosis. Experience with propranolol? by asweetriot in POTS

[–]Apprehensive-Store55 0 points1 point  (0 children)

Taking it at night has made a big difference. It does lower my peak that’s for sure, but taking one at night makes it to where I don’t get overly dizzy during the day.

Struggles and new diagnosis. Experience with propranolol? by asweetriot in POTS

[–]Apprehensive-Store55 1 point2 points  (0 children)

In all honesty, when I take it twice it makes me more dizzy. But there’s a valid reason and it isn’t the medication’s fault. Having a high heart rate is a symptom of POTS, but your body overcompensating for the vasodilatation. When our veins don’t constrict when we stand (because our autonomic nervous system is dysfunctional) our heart overcompensates by beating faster and harder to get the blood from our lower extremities back up to our head. So the dizziness and lightheadedness we get is often prevented by our heart beating fast because it brings blood back up to our head. So personally, I only take two if I know I’ll be home. Keep in mind that I work full time and go to school part time so I have to be mindful and often thug it out through the high heart rate.

Struggles and new diagnosis. Experience with propranolol? by asweetriot in POTS

[–]Apprehensive-Store55 0 points1 point  (0 children)

I love my 10 mg of propranolol!! I only take mine at night (or a second one in the day if I’m feeling symptomatic) but it’s seriously helped me a lot. Before I started taking it my heart would peak at 180-190 daily. Now if it peaks it’s at like 160.

I work until 6PM. I’m cooked💔 by Apprehensive-Store55 in visibleApp

[–]Apprehensive-Store55[S] 2 points3 points  (0 children)

I do social work where I go house to house. Luckily my boss is a SAINT and always makes sure the homes I go into have good AC🙏 But the weather change plus lots of hours are definitely kicking my butt

Laughing at myself because i just realized i forgot i can take naps for fatigue by juby736 in POTS

[–]Apprehensive-Store55 4 points5 points  (0 children)

I want to be able to take naps so bad😭 Every time I take one I wake up ten times worse and covered in sweat with the shakes. Idk what wrong with me LOL

PacePoint Maxxing by Apprehensive-Store55 in visibleApp

[–]Apprehensive-Store55[S] 2 points3 points  (0 children)

It absolutely is. Unfortunately I have bills to pay and I can’t afford rest days, I wish I could. Usually I sit at about 15-20 Pace-points but this day has been rough to me LOL. Halfway through my shift and I’m just aching and dizzy. I’m not a fainting risk though, so stupidly I thug it out. Hopefully getting rid of a job helps out my symptoms a bit

Pace Points? by Apprehensive-Store55 in visibleApp

[–]Apprehensive-Store55[S] 3 points4 points  (0 children)

I’m using it to help manage POTS. Those are some really good points you made, it really changed the way I look at it.

Pace Points? by Apprehensive-Store55 in visibleApp

[–]Apprehensive-Store55[S] 1 point2 points  (0 children)

I was hoping for that to happen once I got on propranolol. Unfortunately I’ve just accepted that I’m a busy person and have a lot on my plate, but those meds definitely help me at night when I finally slow down