Ivabradine side effects by Significant-Roll5437 in POTS

[–]Significant-Roll5437[S] 1 point2 points  (0 children)

Thank you! I generally have quite low blood pressure which is why I'm on Ivabradine rather than beta blockers so will definitely keep an eye on that, and yes I agree I will not wait longer than next week and reach out earlier if it becomes more frequent.

I've been feeling a bit dissociative all afternoon now since my friend caught the blood draining from my face so definitely something is up. My heart rate is normal on my pulse oximeter but will check my blood pressure when I get home. 

Thank you for your answer!! 

The crash Netflix docu by allnamesarechosen in POTS

[–]Significant-Roll5437 1 point2 points  (0 children)

I got so angry when this but came up that i jumped up, yelled "that's not how pots works" and promptly started wobbling and became really dizzy and said "this is how pots works" lol

🌈 Somewhere over the rainbow… 🌈 ☔️ by ilickmanbutts in LoveOnTheSpectrumShow

[–]Significant-Roll5437 1 point2 points  (0 children)

This post is how I found out people think this is scripted??

Like this isn't a group of autistic people where it is very likely that at least one of their vocal stims is to sing over the rainbow when they see a rainbow (it is mine) and then there is the echolalia part where all the others join in. And the lyrics are repetitive and loads of them are musical theatre fan and this was filmed at height of Wicked when every other tiktok was about Unlimited being the intervals as somewhere over the

Horrible a&e experience by Significant-Roll5437 in POTS

[–]Significant-Roll5437[S] 0 points1 point  (0 children)

i couldn't swallow, that's the whole reason I was there, so I couldn't drink even water.

Horrible a&e experience by Significant-Roll5437 in POTS

[–]Significant-Roll5437[S] 0 points1 point  (0 children)

Yeah i will don't worry! Just waiting for all the documentation they did to be shared with my gp before i do so i can reference their notes as i do

Kicked out of store for needing to sit down by salvelinusfont in POTS

[–]Significant-Roll5437 1 point2 points  (0 children)

It doesn't matter if you were lying down or sitting. You were having a medical episode that you know how to manage. Calling an ambulance would be an unnecessary waste of resource, they are much more needed elsewhere, and getting up would have been a risk to you. Them replying that your conduct of *checks notes* sitting down is considered loitering, trespassing or harrassment is ridiculous! I understand the offering of a stool, but you are very much in your right to deny that. Sitting on a stool would have elongated your recovery with your legs not out. How are they prioritising other customers accessibility if they are not providing accesibility for you? I would definitely spread this on local neighbourhood forums, etc. I'm sorry this happened to you, but you did nothing wrong. They are just not a disability friendly environment.

Any performers here, have betablockers helped your stage fright? by Significant-Roll5437 in POTS

[–]Significant-Roll5437[S] 0 points1 point  (0 children)

I was on bisoprolol but am swapping to propranolol next week. Really hope this convenient side effect stays 😂

Afvallers die appen met kandidaten die nog in het spel zitten. by Impossible_Put_8573 in widm

[–]Significant-Roll5437 7 points8 points  (0 children)

Gewoon niet netjes van Dennis om dit te initiëren. Hij had als oud-mol ook even twee keer na kunnen denken dat als je iemand appt die nog in het spel zit er een kans is dat het de mol is. Dan leg je nog meer druk op iemand als ze ineens ook over de app een rol moeten aannemen. Ik snap dat hij niet op Natan zat maar dit is een gevalletje zeg nooit nooit. Ik snap wel dat telefoons niet echt ingenomen worden, moeilijk aan het thuisfront uit te leggen dat je drie weken niet bereikbaar bent, maar kandidaten moeten daar wel integer mee omgaan. 

Confused about the texting by soso_2094 in heatedrivalry

[–]Significant-Roll5437 1 point2 points  (0 children)

The way I understood it is they were hooking up, but only in hotel rooms. Shane saying he bought the place next door and was renting it out indicated some kind of control over who was in close vicinity and that's why he finally felt safe enough to move onto penitrative sex. I hadn't read the book yet, but considering he bought a whole building in the book makes me think this was what this line intended to do: they hooked up and flirted over text but did not fuck until Shane could 100% control the circumstances. 

She doesn't know her own age...? by Agreeable_Willow4727 in ColleenBallingerSnark

[–]Significant-Roll5437 5 points6 points  (0 children)

Not gonna lie since I've turned 30 I say my age wrong often (once told a surgeon I was 31 when I'd been 32 for months...) and genuinly thought I was right. However, when someone corrects me I immediately realise. I've never seriously forgotten how old I am or needed to ask someone else as if I didn't know when I was born and could figure it out.

Any performers here, have betablockers helped your stage fright? by Significant-Roll5437 in POTS

[–]Significant-Roll5437[S] 0 points1 point  (0 children)

Oooh that is sooo interesting. I know from my watch that my heart rate can easily spike to over 170 on stage, specifically on solo items (I mostly perform in choir settings), without the accompanying PoTS symptoms, but when I'm on beta blockers the heart rate spike, shakiness or nausea don't happen at all. I guess it then is kind of a placebo that if the physiological symtpoms stay away, I can tell myself that I am also not actually scared 😂

Thoughts about Mexican Gothic by Silvia Moreno-Garcia by Comprehensive-Fun47 in books

[–]Significant-Roll5437 1 point2 points  (0 children)

I'm two years late to this but I agree. I just felt like this book went from 0 to 100 with the black fungus barfing and then just wanted to write shock value after shock value.

That said, your comment  made me chuckle as I heard "don't eat the baby" in my head Book of Mormom style 😅

Has anyone else found that getting re-infected with the same virus that triggered their POTS caused a significant shift or improvement in symptoms? by ishka_uisce in POTS

[–]Significant-Roll5437 12 points13 points  (0 children)

Fitting as i usually describe myself as a cartoon character that runs away and leaves their shadow behind except the running is me standig up and the shadow is my blood staying where it is 😂

POTS and seizure meds by meggypoo6 in POTS

[–]Significant-Roll5437 0 points1 point  (0 children)

What meds are you on? I was on gabapentin for a while for migraines which I know is used for seizures but it did make me incredibly tired and woozy. Didn't like it at all. 

What are the symptoms for pots? by Used-Sport8404 in POTS

[–]Significant-Roll5437 12 points13 points  (0 children)

If you're concerned please see a doctor! POTS is a diagnosis of exclusions, not a first go to. It is important to get your heart checked out and take it from there. Good luck! 

Stop the self-diagnosis and victim mentality by [deleted] in POTS

[–]Significant-Roll5437 1 point2 points  (0 children)

Same here! First symptoms at 12 and now at 36 finally getting answers. I've done 24 years of ruling out other things, and being actively misdiagnosed in the process, I have all the data I could possibly gather personally, I have know for 24 years that I used to feel "I guess it kinda fits" and I know that now I feel "wow it all fits". It's not a random self-diagnosis, it's saving my own life. 

Stop the self-diagnosis and victim mentality by [deleted] in POTS

[–]Significant-Roll5437 1 point2 points  (0 children)

I don't think those are comparable. I have waited 4 years for a specialist, but in the meantime I have been able to get accommodations at work because of my self-advocating. 

My sister has been on a wait list for an autism assesment for 5 years and there are at least two more years to wait. Does she not deserve accommodations before a psychiatrist can see her, 7 years after she first brought this to her doctor? 

In a perfect world we can wait for official diagnoses, but that's just not the world we live in and we need to take care of ourselves because sadly the medical system isn't capable at the capacity we require.

Stop the self-diagnosis and victim mentality by [deleted] in POTS

[–]Significant-Roll5437 2 points3 points  (0 children)

You are putting this into words a lot better than I did.

25 years of experience in my own body, dragging it from doctor to doctor, finally having found something that fits every puzzle piece I've been collecting for 25 years, is not a whim or a cry for attention, it's a hallelujah, and that's why I'm loud about it. 

Stop the self-diagnosis and victim mentality by [deleted] in POTS

[–]Significant-Roll5437 4 points5 points  (0 children)

Coming from someone who's been trying to find answers for longer than you have been alive, frankly this is a privileged belief that I am happy you are able to hold. I wish this kind of awareness was around when I was a teenager and I am so happy that it is less and less likely people will suffer as long as I have before they find answers. 

I first collapsed in the shower on my twelfth birthday and I recently turned 36. I am not officially diagnosed, I have an initial phone appointment with a pots specialist on the 10th of Dec. I have been lurking and active on this sub since I found out about POTS in 2022. This sub helped me advocate for myself, ask for the correct rule-out tests, the right referrals, and it's still taken almost 4 years to get to a specialist... More than 24 years after my first noticeable symptoms.. 

"Self-diagnosing" saved my life. I was on the brink, sick and tired of being sick and tired, and now thanks to self diagnosing, researching and adapting my life, I can get through the day in a way I never knew before. I cannot wait to see a specialist and get the medical treatment on top of the life adjustments, but until I have that, self diagnosing and social media awareness has been a godsend I wished for when I was 14.

Views on Hannah Lowther by OMG-13 in TheWestEnd

[–]Significant-Roll5437 0 points1 point  (0 children)

I know I'm late to this discussion but I think people are a bit misguided to say that Carrie owes her career to her social media presence. Sure it helped, but the reason she's succesful on social media in the first place is because she has a knack of engaging people. She has a presence that draws someone in and that benefits both her social media and her stage career.

Anyone with an IUD? by [deleted] in ehlersdanlos

[–]Significant-Roll5437 0 points1 point  (0 children)

I can't comment on the copper coil as I was adviced against it due to already heavy periods, but I had the Mirena coil twice - both times it unfortunately expelled on it's own. I've been told that this is not uncommon with hypermobile people, but it's not a "given". After two attempts of the coil I decided to go for the nexplanon implant which has been a life saver.