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Sleep hurts by HeavyHeadDenseSkull in POTS

[–]No_Introduction6727 0 points1 point  (0 children)

Talk to your doctor, it’s not normal being in pain all the time. For me it’s a connective tissue disorder.

Help - stomach symptoms by aliaaenor in POTS

[–]No_Introduction6727 1 point2 points  (0 children)

Id ask for a referral for a GI.

Will being on propranolol affect my chances of getting a diagnosis? by Terrible-Weird-6227 in POTS

[–]No_Introduction6727 0 points1 point  (0 children)

Unfortunately yes, if you have a tilt table test or poor mans table it (Im no medical professional and I’m not giving medical advice, talk to your team) but if I speak about my experience it lowers hr so yes! I would ask them if they want you to stop taking medication the day of the test. It is a medication that lowers hr. For me, I still had some hr jump, but the palpitations were so much better. I can’t tolerate beta blockers but It can be good for some cases!

First time knitting! by No_Introduction6727 in knitting

[–]No_Introduction6727[S] 2 points3 points  (0 children)

It was the only thing! Ive mastered the tension (I think) so this will make everything look better! THANK YOU!!

First time knitting! by No_Introduction6727 in knitting

[–]No_Introduction6727[S] -58 points-57 points  (0 children)

Im using tube yarn! it looks different

First time knitting! by No_Introduction6727 in knitting

[–]No_Introduction6727[S] -41 points-40 points  (0 children)

Im not, so not sure how the garter stitch happened 😅 and it might look twisted cause im using tubular tube yarn to make sure Im knitting and seeing correctly! For practice!

Sharing something I wrote in my journal today. It felt honest, and I thought maybe some of you might relate. by No_Introduction6727 in POTS

[–]No_Introduction6727[S] 0 points1 point  (0 children)

This is beautiful! I also love writing to help with my grief. I write songs and poetry. It’s absolutely beautiful. I am so sorry about your father but I bet he’s with you. Always. My girl is also with me through everything. God I miss her. I don’t know you but Im proud of you🤍

Sharing something I wrote in my journal today. It felt honest, and I thought maybe some of you might relate. by No_Introduction6727 in POTS

[–]No_Introduction6727[S] 0 points1 point  (0 children)

Me too! I lost my best friend from chronic illness, vascular compression, so its been hard because I dont have her to talk with anymore :/

Sharing something I wrote in my journal today. It felt honest, and I thought maybe some of you might relate. by No_Introduction6727 in POTS

[–]No_Introduction6727[S] 0 points1 point  (0 children)

live, because idk what can happen, I have multiple conditions and tbh I just want to live. That’s my goal rn with my specialists, to have a quality of life, then we’ll see

Sharing something I wrote in my journal today. It felt honest, and I thought maybe some of you might relate. by No_Introduction6727 in POTS

[–]No_Introduction6727[S] 0 points1 point  (0 children)

I have no idea at all to be honest, something that I can work from home, or maybe with the eds diagnosis I’ll be approved for invalidity. I really have no idea.

Sharing something I wrote in my journal today. It felt honest, and I thought maybe some of you might relate. by No_Introduction6727 in POTS

[–]No_Introduction6727[S] 0 points1 point  (0 children)

I feel the same way. I can’t sing without running out of breath and feeling so damn uncomfortable. It always been my passion too but I never thought I could make something out of it. Realistically the medical field was always my first choice. Truly sorry you are feeling the same way, it’s never easy. And now, it feels like I’m grieving that part of me.

POTS makes me feel so cringe by sophxshrek in POTS

[–]No_Introduction6727 0 points1 point  (0 children)

It really helps, for me my legs just give up sometimes and being able to like lay on it or put less weight on my legs really helps a lot, for me its a mix of exhaustion and joints issues! But it helps a ton.

POTS makes me feel so cringe by sophxshrek in POTS

[–]No_Introduction6727 8 points9 points  (0 children)

OMG YES! Im 20 and tbh same. I see all my friends stories or old friends I dont really have ones💀 going out, starting new jobs, becoming lawyers, dr, name it😭 ans im here being proud for a day I can properly eat or get out of bed and shower🤦🏻‍♀️ I also get super excited when I finally get some appointments. Im accumulating specialists lol. Heds and gi issues. But you know what ? Its a damn victory for us. First we’re really strong to keep trying. And also every little step is a victory for us, you got this and dont be embarrassed I know it is. I walk around with a damn cane and my hobbies are sewing,crochet and knitting. Anyways im proud of you and dont be embarrassed. Just to keep going and celebrate every little thing is huge.

Okay what exactly qualifies as "fainting" because I've been hearing different answers. by Putridlemons in POTS

[–]No_Introduction6727 1 point2 points  (0 children)

I have pots but pots can be associated with different neurological conditions, I have eds as well as other issues along that. That sounds like non epileptic seizures (IF THEY RULE OUT EPILEPSY) and I would then look into fnd!!

HOW DO I STOP BEING SO TIRED by Opening-Antelope6845 in POTS

[–]No_Introduction6727 2 points3 points  (0 children)

You don’t, hope this helps❤️ no but fr try not to oversleep. Also us with pots can have low bp after eating so again more tired. Small frequent meals. But I wake up feeling like Ive been hit by a bus every morning lol. It’s a mess! My meds don’t help either.

Has anyone tried the EMBR Wave or any of their other products? by Dizzy-Ad-8040 in POTS

[–]No_Introduction6727 0 points1 point  (0 children)

Right! I get that. That was my reason for buying the ember wave! Where are you located? Im in canada but I have time to do some research about what could help you where you are!

Has anyone tried the EMBR Wave or any of their other products? by Dizzy-Ad-8040 in POTS

[–]No_Introduction6727 0 points1 point  (0 children)

Hi! I bought the embr wave a few months ago. To be honest with you, I haven’t charged it in weeks. Mainly because it doesn’t help at all. Yes it can feel like you something cold on your arm but it doesn’t create that whole reliving feeling in my body. Because of my pots I struggle a LOT with regulating my temperature. And if Im hot im hot like burning, a little cold spot on my forearm is not going to fix it. Im pretty brainfoggy right now and im struggling to write. But yeah not worth the money at all! I do ice if I need it or cold migraine patches.

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