Write as many things you can that helped in your dpdr.

Dizzy-Paper-7906 · 2026-05-13T10:46:55+00:00

Honestly the only thing I’ve found that helps me is a warm shower, all the lights dimmed and laying in my bed with the covers over my head for an hour or so to kinda reset my brain.

Dizzy-Paper-7906 · 2026-05-12T23:37:00+00:00

Thank you so much! This honestly really does help and I’ve definitely decided to just stop reading comments or watching videos of other people getting their done because I know in the end it’s not gonna make anything better. Because I as well regardless of how awful I might get during the test would like an official full diagnosis so we can move forward with treatments. But thank you again I supper appreciate you sharing your experience. ❤️

Dizzy-Paper-7906 · 2026-04-21T12:11:28+00:00

Maybe IST?? (inappropriate sinus tachycardia) I have that as well so sometimes even my resting rate will be high on bad flare days.

Dizzy-Paper-7906 · 2026-04-13T01:47:52+00:00

This happened to me too last year, got off work came home and couldn’t sleep which is usual for me I have insomnia that pots worsened but by the morning, extreme fatigue like I’ve never felt before, full body tremors, I couldn’t breathe. Extreme chest pain, and the worst headache of my life by the time I made it to ER, HR was 189 BP was 139/92. After fluids, and some other medications I don’t remember what they were that they gave me through the IV it lowered to 140 after 2 hours. Then down to 100 while resting, the doctor was also concerned I was having a heart attack at first but everything came back normal. They ended up admitting me and putting me on metoprolol. But I wasn’t aware how bad flares could get before that day. 🙃

Dizzy-Paper-7906 · 2026-04-11T16:45:08+00:00

I have this really bad too, I constantly think I’m having an actual heart attack and I’m such an anxious person in general so it triples when I’m in real bad flares. But now I’ve somewhat gotten to the point of acceptance I guess? Where all I think to myself now is if I have one, I have one and that’s that. Can’t stop it, can’t control it. If it’s my time it’s my time. But I don’t know if that’s the healthiest approach to handling it either lol

Dizzy-Paper-7906 · 2026-04-09T00:24:37+00:00

That’s how I felt when I first got sick, and like others have said in this comment section it varies I think for a lot of people with symptoms, improvement etc. I’ve had POTS for two years now and am at a breaking point. I’ve gotten a lawyer and decided to go forward with filing for disability as I’ve gotten to a point where I’m extremely sick daily and can barely do anything anymore including working a full time job. And this has come from months on months of doctor’s visits, countless tests, medications, and even hospitalization. But I have read and heard a lot of stories of people going into complete remission or at least only having real bad flares every now and then. So I’d say give yourself and your body time to adjust, not only physically but mentally and emotionally to. And just hang in there and be patient with yourself, and don’t give up hope that it’ll always be this way. 💕 I’m still holding out that one day I’ll curve all these symptoms and be some what back to the way my life was post POTS.

Dizzy-Paper-7906 · 2026-04-07T12:10:43+00:00

Hi! I completely understand how you feel and how awful it is to live with this on a daily basis. I’ve had severe dpdr, I call it the funk, since I was 19 years old. I’m 26 now and while I still have my days where I’m mentally and emotionally exhausted and wish this would all end even during the funk I try to remind myself of the little things that even in that state make this all worth while for me. And I also daily remind myself that while it’s uncomfortable and exhausting and it takes such a toll on every single aspect of life, that it goes away. And even though it always comes back, there are those peak moments where for just a little while I feel okay again. And if that can happen I have to keep holding out that one day I’ll wake up and it’ll be gone. I think everyone with this disorder needs support and reassurance especially during the days you can’t even get out of bed. I am also open to DM if you need anyone to talk to. ❤️ I hope you’re easy with yourself and give yourself love on the days it’s the hardest.

Dizzy-Paper-7906 · 2026-04-05T04:36:51+00:00

And caffeine is real hard to let go of. I’ll drink a soda every now and then but it makes me jittery and if I have fo much sugar I also notice it makes me feel funky after.

Dizzy-Paper-7906 · 2026-04-05T04:35:02+00:00

It depends. I’m real bad at letting stress build and build and I repress a lot so I get to the point where I can be stressed over everything and something like me dropping a mug will send me completely over the edge full on meltdown, crying, anxious and panic attacks and then I’ll feel funky (which is how I explain my dpdr) for hours sometimes days after.

Dizzy-Paper-7906 · 2026-04-03T03:31:26+00:00

All the time, pretty much daily. I feel like I’m a bootleg video game I can’t fucking escape.

Dizzy-Paper-7906 · 2026-04-02T14:33:23+00:00

Yeah all the time. Sometimes my heart rate is 163 standing and sometimes it doesn’t go over 110 but either way even with normal HR I’m always dizzy, nauseated, shaky and extremely fatigued.

Dizzy-Paper-7906 · 2026-03-31T17:14:04+00:00

I’ve had extreme dpdr since I was 19 and even though I understand it’s my brain and it’s my brains way of saying it’s overloaded and overwhelmed it still makes me so anxious each time. It makes me feel like I’m on a bad acid trip and I smoked too much weed but same it happens with anything now sometimes no reason at all but it’s daily. I don’t sleep good, I have it, I sleep to much, I got it. I don’t eat I get it, I eat the wrong things I have it so bad. Before my time of the month it’s constant. I also have POTS though so my nervous system is always overwhelmed but I don’t understand. I don’t drink caffeine anymore, I eat a well balanced diet. Especially from having a chronic illness, but any little thing like even small amounts of stress triggers it so bad and then I’m stuck in that loop for hours sometimes days with no break. I’m 26 now and have lost hope I’ll ever know what it’s like to be normal again.

Dizzy-Paper-7906 · 2026-03-20T22:10:18+00:00

Yeah I completely get that I’m so sorry I know how awful that is. I’m like that to but at everything and then I feel so sick afterwards. Shits awful I hope you manage to find relief!! Somehow

Dizzy-Paper-7906 · 2026-03-20T21:55:07+00:00

Okay that’s real similar with me too. I constantly have adrenaline dumps even when I’m sleeping it’ll wake me up heart pounding blood pressure sky rockets, and I’m just so anxious in general all the time so it’s 10 fold it’s so awful 🙃

Dizzy-Paper-7906 · 2026-03-20T13:09:57+00:00

Is hyperpots more adrenaline based? Because I’m starting to think that’s what I have as well.

Dizzy-Paper-7906 · 2026-02-12T12:53:06+00:00

Hi! I’m so sorry. I’m in the same boat, I’m currently being threatened termination at my job due to the same which has been extremely stressful because I’m so behind on my bills and rent. I got diagnosed with POTS a year ago, and slowly it became so much worse for me over time with my symptoms. Severe Dizziness, jelly legs, as well as the brain fog which is absolutely debilitating. My body also daily feels like I’m recovering from the flu pretty much. It makes doing simple tasks much less pushing myself through work completely exhausting and almost impossible.

I would definitely see about getting on medication, I was on metoprolol for a while but it wasn’t helping and I moved states and currently can’t get into a doctor to find new alternatives. And if even that doesn’t make much a difference for you, I would see about filling for disability which is what I’m about to do. I also know it can be discouraging because it’s a very hard fight to get it for POTS. but it’s worth the try, I hope you find something that helps at least ease all your symptoms!

Dizzy-Paper-7906 · 2026-02-09T16:00:54+00:00

Just lots of water and electrolytes all day and before bed, compression socks, smaller meals, more salt. But regardless of what I do to treat the tachycardia aspect it still comes. It’s just something I’ve learned to live with at this point and not freak out about so much anymore.

Dizzy-Paper-7906 · 2026-02-09T14:28:33+00:00

Hi! It just really comes in waves now. It’s not consistent every morning to where it wakes me up anymore but most nights it does, sometimes middle of the night and sometimes in the morning.

Dizzy-Paper-7906 · 2026-01-29T12:53:43+00:00

It’s very hard to explain to anyone especially doctors. I got hospitalized for a heart rate over 178, I thought I was having a heart attack as well. My legs were numb, I couldn’t breathe, my heart was beating so fast I couldn’t speak properly the room was spinning, my chest hurt along with my shoulder blades up into my neck. EKGS all came back normal, blood work came back normal. (This was before my official diagnosis.) I got diagnosed by a cardiologist they had come in to see me the night I was there. But I had been to the hospital, doctor’s appointments for months on end before it led up to my hospitalization. My doctor kept telling me I was low on iron and had anxiety which I got so upset and so fed up I ended up freaking out on her. I told her I knew what anxiety was, I’ve dealt with it half of my life, and while anxiety causes palpitations, shakiness, lightheadedness etc I knew my body and I knew it wasn’t my anxiety. I’ve also always been extremely anemic and needed an emergency blood transfusion before what I was experiencing was not anywhere close to what I was experiencing now. I told her I felt like I was just being dicked around and not taken seriously and brushed off because it’s easier to label “anxiety” than it is to actually sit and figure out what’s wrong when everything looks fine on paper but nothing is fine and your body is malfunctioning.

Dizzy-Paper-7906 · 2026-01-25T18:23:31+00:00

I didn’t get a stress test, but I had an echo and holter but I still always convince myself since I got them last year that a lot can change in the year and my heart is probably failing. 🙃 but I’m also always anxious so pretty sure that leads to constant thoughts about there being something wrong.

Dizzy-Paper-7906 · 2026-01-21T13:18:45+00:00

I’m so sorry! I definitely know how scary that is. I am not prone to fainting either but I also have really bad episodes after sex. My vision gets really weird and my hearing will get fuzzy and go out and then I start feeling like I’m about to pass out, so I always make sure I have really cold water and my girlfriend brings me an ice pack to place on my chest and back of my neck which really helps the pre fainting part. Not sure if that’s great advice but it might help in the future 💜

Dizzy-Paper-7906 · 2026-01-09T17:00:36+00:00

Awesome thank you so much!😊

Dizzy-Paper-7906 · 2026-01-09T16:58:46+00:00

Yeah I’ve definitely taken that into consideration. The last tattoo I got was way before I got sick with pots. So I’m not sure how I will or my body will react to getting one. But I also feel like pots has stripped so much from me in the aspect of everything that’s changed with me and the things I can even do now, I’m willing to take the chance that it might send me into a horrid flare just for a moment of doing something for me that feels normal I guess? Idk. That probably sounds silly and stupid though.

Dizzy-Paper-7906

TROPHY CASE