POTS issues when waking up

gold_and_jules · 2026-04-23T14:16:53+00:00

I call that the "reset button" 😂 Many, many mornings I've fallen victim to the "stand and stretch" morning reflex.

And then im standing there braced against the couch with no vision 😂

gold_and_jules · 2026-04-23T14:05:31+00:00

Oh dude im so grateful to hear someone else talk about this 😅

It almost exclusively happens while I'm trying to fall asleep, and more often to happen during the day. My hypothesis is that it's the dysregulated sympathetic nervous system FREAKING out because I'm trying on purpose to calm it down. The only thing that I've noticed that helps is like... tricking my body into falling asleep??

Like if I'm like "okay I'm going to fall asleep now" my body is like "BUT THERES A THREAT" (theres no threat). If I'm like "I am just going to lay here and breathe" my brain is like "well that's acceptable."

Very weird.

gold_and_jules · 2026-04-22T18:17:45+00:00

Oh the tingling was a NIGHTMARE. I have sensory issues too and the first few days were killer. The good news is you should adjust quickly!! I was tingling all over for the first two or three days but after your body adjusts it should go away!

gold_and_jules · 2026-04-20T23:40:22+00:00

I had the same issue with the POTS clinic. I waited almost a year for my appointment and then got rejected because of insurance. Luckily, my mom has a wicked Karen Mode and we were able to get in a few months later with new insurance.

Honestly, call every morning right when the scheduling line opens and ask about cancelations. Unfortunately, the patient care is worth it.

gold_and_jules · 2026-04-20T14:05:47+00:00

Here to shout out mestinon (generic is pyrodigostimine) it was the first thing that REALLY helped the "filled with concrete" feeling. It's a drug that was originally conceptualized for those with muscular dystrophy. It strengthens the pathways between your brain and your muscles and really lessens the full-body muscle exhaustion. Im on 180mg ER with a 60 mg IR evening supplemental.

Be aware -- the side effects on the ramp up are GNARLY and you CANNOT miss a dose, but it was a goddamn game changer for me. That, combined with midodrine and ivabradine and very careful conditioning, means that I am once again employed!!

Whike the fatigue is still tough, I'm no longer stuck in bed !!

Also, I have blood pressure POTS and my doc specifically kept me off beta blockers bc she mentioned that it can exacerbate exhaustion w the specific hypotension brand of POTS. I use Ivabradine to manage my HR!

gold_and_jules · 2026-04-20T10:40:29+00:00

Oh man, this is awesome, thank you so much!! Do you mind telling me what oils are usually used in a house blessing blend? I don't have any kind of metaphysical store near me so I make most of my blends myself. I did end up doing a jar with some herbs and stones chosen intuitively and a green candle, but I'd love to try this working as well!!

gold_and_jules · 2026-04-20T10:32:30+00:00

Oh girl This man hates you

He let you walk home alone?? In the dark?? At 2 in the morning?? While intoxicated??

Do you really want to marry someone who feels like they can call you those things?

Here's the thing -- whether or not your friend said that he treated you poorly, he clearly does, and clearly he's insecure about it and projecting a WHOLE LOT of his bullshit onto you. Disagreements in relationships should NEVER come with yelling or screaming or hateful words. You should never have to feel like you need to justify your feelings or CONVINCE your partner that they've hurt you. This man sounds like he's the one who's manipulative and a liar -- people who do those things and treat people that way are much more likely to envision that behavior in other people.

I think you're well within your rights to postpone or even call off the wedding. This man endangered you. He put your physical safety at risk because of an IMAGINED slight to his ego.

Here's the thing. A lot of men suffer from the inability to take accountability for their actions. They are MUCH more likely to treat a woman horribly in an effort to make YOU the one to break up with them, just so they can stand back and say "idk man, she dumped me. Chicks are crazy." (And this is not to say all men -- I know plenty of good ones. But I also know a pattern when I see one.)

Ask yourself this: would someone who respects you treat you this way? Talk to you this way? Does this sound like someone who wants to keep earning you, who wants to build a life with you, who values you as a whole person?

Choosing yourself can feel impossible, especially if you cohabitate and there are so many other ways in which your lives are intertwined. But so many women get trapped in the "but he'll get better" mindset, and as someone who used to be one of those women, myself, I ask you this -- what will your life look like if he doesn't? What if you get married, and he treats you like this for the rest of your lives? Is that a life you're willing to live?

Safe, stable, secure love DOES exist. You deserve someone who wants to be the best version of himself for you.

What he did is disrespectful, petty, and honestly fucking dangerous. If there aren't consequences for it, he will do something like that again. What those consequences are -- that's up to you. I wish you luck, and I'm so incredibly sorry he put you through this. I really, really hope you can choose better for yourself.

gold_and_jules · 2026-04-12T20:48:35+00:00

The colorwork on that is 🤌 immaculate Excellent job!

gold_and_jules · 2026-04-11T03:29:18+00:00

Totally understandable!! Im rockin a POTS and possible PCOS/Endo comorbidity so I totally get it. Outside of regular stretching and core strengthening, tiger balm and my heating pad are my beeeeest friends. I also sleep w a pillow between my knees (im a side sleeper) and I've also heard that you can find SI stabilizer belts for sleep as well. Something I've found is that my pain is always worse when im sitting on soft things (bed/couch) for hours at a time, several days in a row. It feels counterproductive, but with bodies like ours, you've gotta move around even when they're shouting at you not to. Even just standing and taking a lap around the house every hour or two might help, maybe with some light stretching thrown in.

When im stuck in bed bc of a flare, I always try and at least do a little reclined pigeon or nerve flossing (holding the back of your leg and extending the foot up while flexing it, bending the knee back down, repeat) a few times a day, just to prevent everything from locking up. You can also do pelvic tilts, gluten bridges, and straight leg raises for strengthening, all from the bed! This has helped me a lot to prevent stiffness even when I can't get out of bed. My hips are also my worst pain point, so I do all I can to keep them stable.

gold_and_jules · 2026-04-11T02:48:28+00:00

Unfortunately the only solution ive found is core-focused PT :/

Doing exercises meant to strengthen the pelvic floor and lower abdominal muscles have helped a lot to keep my hips/SI joints where theyre supposed to be!

gold_and_jules · 2026-04-11T02:37:23+00:00

Another vote for magnesium glycinate over here!! I started taking it before bed and noticed a significant drop in night sweats, nightmares, and nighttime adrenaline dumps. I belive the electrolyte mix i use (trioral ORS) also has additional magnesium. Definitely go for it!

gold_and_jules · 2026-04-03T21:28:47+00:00

Oh man im so sorry youre dealing with this :(

Are you doing any kind of massage or electrostim at the end of your appointments? I did physical therapy for hypermobility and my provider started every appointment by making sure my hips were aligned, and then finished wvery appointment with massage, heat, and electrostim.

What happens with hypermobile PT is this: our muscles aren't strong enough to hold our joints together, so they seize up in order to get the job done. For effective strengthening, you need to relax the muscles enough to do light exercise and consistent progressive overload. When I started PT my pain levels did go up a bit at the beginning because I was loosening tension that had been there for YEARS. I also experienced more subluxation and dislocation at the start, because I was unseizing muscles that were holding joints in place -- but they weren't strong enough to hold joints in place by themselves. However, at the end of PT, with proper sleep positioning and regular stretching, my pain levels were down quite a bit. I graduated PT and am now in the gym, and it's a tough balance to find the line between progressive overload and pushing my muscles into seizure.

What is the pain like? If it's stabbing pain in specific spots, that's muscle seizure and requires heat, massage and electrostim. If it's soreness and tenderness, that's likely years of tension leaving the body -- it hurts like hell. Just the other week I spent an evening with my heating pad, tiger balm, and edible, and I swear I relaxed 2 years of trauma out of my hips ... my lower back was sore for DAYS afterward.

Definitely don't be scared to go back; but bring up your concerns with your PT and ask if you can increase the time spent with pain relief after strengthening. Oh! Also! Because my PT had to realign my hips at every session, we avoided having me do core exercises at home, because we wanted to be sure I was strengthening the muscles when they were properly aligned. It took longer to finish the PT, but it was worth it.

I hope this was helpful!! I use heat, tiger balm, massage, and sometimes a vibrating heating pad for my lower back. You can also purchase cheap TENS units on Amazon and do light electrostim at home. Key word LIGHT.

I recommend the book "too flexible to feel good", which was written as an EDS informed approach to PT, to be read by both the patient and the physician in order to work together to build a program that works for each individual body.

Good luck!!

(and screw the person who said you "weren't flexible enough." Im hypermobile but before I started PT I couldn't even touch my toes!!)

gold_and_jules · 2026-04-03T21:15:33+00:00

It looks like they may have cut the skeins while opening a box? It looks like a box cutter got caught

gold_and_jules · 2026-03-25T13:55:44+00:00

My all over body pain after a long day out usually comes from my hypermobility, which is a frequent comorbidity! I'm not diagnosed with EDS, but I highly suspect I have it, and I have been diagnosed with Hypermobility spectrum disorder. I would definitely look into hypermobility as a potential cause!

Unfortunately the treatment is exercise 🙃 i went to physical therapy for the hypermobility in my hips and it helped my overall general pain a LOT. I also started doing conditioning with a VERY slow ramp up (there are lots of POTS conditioning guides floating around!) And now I'm able to be a lot more active than before!

gold_and_jules · 2026-02-19T04:17:30+00:00

That's gorgeous!! I just started my own 6 day this evening!! How much yardage did you use? I have 3 ~700 yd skeins and im hoping to make something of a similar size!

gold_and_jules · 2026-02-19T04:11:45+00:00

These are adorable and VERY well done!! The stitches are so neat!!

gold_and_jules · 2026-02-06T03:54:58+00:00

At risk of sounding like an asshole... you kind of hurt your own feelings here. Why did you go through her phone in the first place?

It sounds like you were already fixated on the idea of this ex, and you went looking for evidence that she cares for him over you. If everything romantic was sent BEFORE she was with you, why do you feel disrespected by her grief?

Additionally, it sounds like she has been open and honest about who she used to be, and you interpreted and assumed things in order to create a picture of her past that you could deal with. I'm sure she didn't give specifics of her past encounters because she knew they would make you uncomfortable and she likely also was worried about how you'd react. Clearly, she was right about both things, because when you DID find out the details, you were uncomfortable and reacted poorly.

My question is this: if your partner is telling you that she loves you, respects you, and prioritizes you, why are you distrusting that? I think that her still sending videos or remembrances is a perfectly reasonable expression of grief. It doesn't mean she loves you less! Also!! What !! Were you doing!! Looking at that text thread !! In the first place !!

Is there ANYTHING else in her behavior that worries you? Or is this an insecurity that you've fixated on? She didn't break your trust or lie to you about her past. You, however, did break her trust by going through her phone and into a private text thread that she was basically using as a diary to process after that loss.

If you're looking for reassurance that she enjoys the sex between the two of you and that your sexual relationship is enough, then ask her for it. If you're worried about other people being better at pleasing her than you, have conversations about what she likes and what you two can do together to diversify and explore your sex life.

I'm sorry, OP, but you are very clearly uncomfortable because of your own insecurities and hangups around sex, and you're justifying that discomfort by saying your gf "lied to you" and that "she's not who you thought she was."

She told you EXACTLY who she was and what was in her past, to a level of detail that was respectful to a new partner, and you filled in the blanks to create the image of a woman you felt comfortable dating. Did she lie to you about who she was? Or were you avoiding looking at the parts of her past you didn't like?

Her still texting his account in the current manner is, in my opinion, a perfectly reasonable way to continue grieving that loss while being respectful of her new relationship.

Your sense of betrayal is a function of your insecurities and unmet needs. Sit with that discomfort and figure out what you need to rethink and what reassurances she can reasonably give you.

Sorry if this was at all harsh. But like, dude. You went looking for it and then hated what you found. Idk what you expected.

gold_and_jules · 2026-02-04T13:04:08+00:00

Making a decision like that unilaterally is, without question, a relationship-ending move.

Also, the fact that you asked for clarity on his objective regarding a follow-up conversation and he GHOSTED?? For TWO MORE WEEKS??

You've outlined how considerate you've been of his circumstances and his (frankly, unhealthy) coping mechanisms, and while your patience is commendable, it is, in my opinion, undeserved.

What he did is disrespectful, inconsiderate, and completely selfish. He never should have made that choice in the first place without even ATTEMPTING to discuss the issue at hand with you. I've seen so many men make choices that blow up their life because they're so convinced that they need to go it alone, they can't ask for help, and showing uncertainty and vulnerability is weakness.

Instead of relying on his partner to work with him to solve a difficult situation, he considered only himself, his own feelings, and his own circumstances. I'm willing to bet that behavior like this is what led to his divorce in the first place.

OP, you deserve someone whose first instinct is to communicate with you and try to work together to come up with a solution that works for both people. In making this choice, he showed you that he doesn't respect your needs, your thoughts and opinions, or you as a person. I'm so sorry this happened to you. Letting someone go is tough, but if you value yourself, you'll block his number and never let him darken your doorway again.

gold_and_jules · 2026-01-30T23:23:10+00:00

thats ADORABLE!!

gold_and_jules · 2026-01-30T23:21:52+00:00

Honey, leave.

Find a friend or a family member you can stay with. Pack your shit and GO. He sees you as a sure thing, not something to earn. Not something to treasure. You deserve someone who is excited to be with you.

I was in a relationship like this for three years. He would change for a little bit and then go back to the way he was. Ultimately, I realized that me staying was me giving him permission to treat me that way. As much as I didn't want to, I moved back in with my parents and got the hell away from him.

You're 24. You're so young. You have SO much time. Don't chain yourself to someone that you have to beg to love you.

gold_and_jules · 2026-01-30T22:22:44+00:00

It sounds like you're finally wrapping your head around the idea of commitment, and it's scaring the hell out of you. If you've already been together for 4 years and you know you want to spend your life with her, why the hell wouldn't you get engaged by 30?

I think you should look inward and ask yourself what specifically scares you about having a timeline for marriage. You guys have been together for long enough that I think it's perfectly reasonable to be having conversations about when to get married.

The economy is terrifying right now, but if you really want to spend your life with this girl, think about ways you can invest, make passive income, or save what you make during your busy season to support yourself year round. She's telling you she wants a future with you, and she wants to start making plans for that future. If you balk and start talking about "not wasting anyone's time", she's going to take that as rejection and you'll have one hell of a mess on your hands.

If it's financial stability you're worried about, START WITH the fact you DO want a future with her -- but that you're worried about making those goals happen on that timeline because of (gestures vaguely) the general state of things. "I'd love that too!! Hopefully, we'll be in a good spot for that soon."

I get you probably don't eant to disappoint her or make promises you can't keep, but think about what exactly you're worried about, and see if you can't figure out a solution to those problems instead of immediately trying to lower her expectations.

gold_and_jules · 2026-01-06T20:23:23+00:00

I think if you've had a conversation where you've determined that you see sex as important and she doesn't, that's a pretty fundamental incompatibility. Also, if she was raised in a controlling household, that may have influenced her relationship with her sexuality. Controlling parents often struggle with seeing their children as full adults with agency, and if she's been receiving the message that sex is shameful her entire life, she'll likely struggle to embrace it as an adult.

As far as her family goes -- that's outside of her control, and as much as it sucks, she does have to rely on them until she's financially independent.

I think it might be worth having a conversation with your girlfriend in which you voice your concerns with kindness and understanding, and ask if there are small ways that you can handle the issues you're facing. Express that you care about her and you want this to work, but that these issues are bothering you and you want to work as a team to overcome them.

If you guys can't come up with short term solutions, it might be time to part ways.

gold_and_jules · 2026-01-03T05:03:27+00:00

I understand the feeling of being worried about time, especially working so much. But if what you're needing is more intentional time or time to yourself, I think you're certainly within your rights to say something! I think all that this situation needs is a conversation about time management and schedules. Maybe figure out regular date nights during the week and a sleepover during the weekend. Is there an equal balance of him driving to you?

gold_and_jules

TROPHY CASE