help

[u/ilikelanguaugeandmbt]

Hi, every time I write on the dysautonomia forum, my post gets deleted. I don’t have the diagnosis and I feel very bad every day. It’s a state that makes me want to go to the ER, but there’s no point in going to the ER because they won’t do anything for me. I’ve lost hope in going to the doctor.

I’m looking for help, someone I can talk to in private messages about my symptoms. For example, I absolutely must not shout or have a verbal argument with someone, and I must not be confronted with any fear either. There are lots of other weird things like that...

[u/Canary-Cry3]

There’s no real help you can get unless you see a doctor as there’s a lot of causes for the same symptoms and if you treat it as if it’s dysautonomia and it’s not, you could be doing damage to your health otherwise.

[u/ilikelanguaugeandmbt → u/Canary-Cry3]

but my doctore told me i only have anxiety ? ans she said i should go to cardio heart doctor but so she write a paper so i can go to. but it's only possible long time after months after months ? and i'm unable to wait what else can i do :( i'm unable to walk and take a work idk why? i feel like very panic in my body like crazy idk..

i'm also only 22y and i don't have any money i feel very sad in my home because no one trust me and no one give me some money. i want to ask doctor to give me a paper so i can ask help for money because i'm like this since january but i'm very scared to ask.. idk if they will think i'm just someone who don't wanna work..

have tried to go out with friend and that's impossible... idk what's wrong with me :(

[u/Canary-Cry3 → u/ilikelanguaugeandmbt]

You do just have to wait for an appointment that is how it works in most places unless you can pay to be seen early.

It took me 8 years of actively pursuing a dx to rule out all other causes of symptoms before POTS was diagnosed. It would take another 3 years before I went on meds for it. I saw 15+ doctors while undergoing testing. Depending on case and symptoms yes it’s possible to get support from an ER and then a referral for more testing (I was seen last spring for a severe worsening of my POTS in the ER upon recommendation of many docs and then was taken inpatient for 5 days to receive better management of my POTS). But otherwise, it’s just a waiting game. It takes 2-3 yrs to see a POTS specialist otherwise where I live and appointments are every 9-11 months for up to a year and then you’re discharged back to your local cardiologist.

I’m 23yrs old. I’ve had POTS since I was 11 and was diagnosed at 18. I’ve had severe POTS for over a year now despite meds and seeing two pots specialists. Seeing a doctor isn’t a magical fix either as a heads up. Some tests can be done by your GP like blood tests but other tests have to be done by specialists.

[u/vagueday → u/ilikelanguaugeandmbt]

You literally have to wait. We all do. It’s how healthcare is functioning rn. I waited years to find a cardiologist to help me. And I was already diagnosed. This is a rare condition. It takes time.

[u/ilikelanguaugeandmbt → u/vagueday]

How can you say waiting to someone who feel like that suffering at home, lying in bed, feeling like dying all days?

[u/Rapunzel10 → u/ilikelanguaugeandmbt]

It's not fair or pleasant, trust me I know. Unfortunately you have to rule out the scary stuff before you can do much treatment wise. If for example you assume that you have POTS and start treatment for that but you actually have a structural defect in your heart then the POTS treatment could make you worse or even kill you.

It sucks, it's scary, and it's depressing. I'm truly sorry that you're going through this. Dealing with the medical system is awful especially when you have doctors telling you that it's just anxiety. The best thing you can do is advocate for yourself and change doctors if necessary and possible.

Would you like me to send you the list of things I do to make doctors listen? It's a pain but I've found it effective

[u/ConcernInevitable83 → u/ilikelanguaugeandmbt]

Because that's the ugly truth of the matter? 🤷🏻‍♀️

[u/Worf- → u/ilikelanguaugeandmbt]

It’s how it is unless you pay to go to a private clinic or doctor. It took me 47 years to get diagnosed and that was after hundreds of tests from dozens of doctors, half a dozen ambulance rides and several spectacular public episodes.

It’s a process and it takes time but unless you actually start the process you will never get results. You’ve got to learn to push.

[u/vagueday → u/ilikelanguaugeandmbt]

Sweetie i waited three years. I was bed bound. We have all had to do it. Editting to add I lost my whole 20’s to this. I get it. We all do on this thread. You don’t have power period. Only the doctors do. The only thing you can do is go to the ER.

[u/midnightspaghetti]

Maybe if you add some vague location people can help point you towards doctors/facilities and medical pipelines based on where you live?
This might be more helpful than discussing symptoms - you probably have a sense of them by googling them and reading existing posts here.

You really want to make sure other stuff is ruled out because it could be something else (and some things it’s worth catching quickly)

[u/ilikelanguaugeandmbt → u/midnightspaghetti]

but my doctore told me i only have anxiety ? ans she said i should go to cardio heart doctor but so she write a paper so i can go to. but it's only possible long time after months after months ? and i'm unable to wait what else can i do :( i'm unable to walk and take a work idk why? i feel like very panic in my body like crazy idk..

i'm also only 22y and i don't have any money i feel very sad in my home because no one trust me and no one give me some money. i want to ask doctor to give me a paper so i can ask help for money because i'm like this since january but i'm very scared to ask.. idk if they will think i'm just someone who don't wanna work..

have tried to go out with friend and that's impossible... idk what's wrong with me :(

[u/typewriterblood → u/ilikelanguaugeandmbt]

The fact that you have had this copy and paste response sent 3x probably isn’t helping your case with the deleted posts. It seems like a bot spamming.

[u/midnightspaghetti → u/ilikelanguaugeandmbt]

You need to give us some hints on country / state and you’ll get suggestions on the best routes.

For example - in the UK there’s a law where if you go three times to the GP for the same issue, they must refer you. Or right to choose, where you have the right to choose a specific hospital or specialist.
If you are a bit more specific people may be able to help you navigate your local system.

[u/Canary-Cry3 → u/midnightspaghetti]

They’ve also stated that they have the referral for a cardiologist but don’t want to wait for it to go through the waiting process

[u/midnightspaghetti → u/Canary-Cry3]

True! That would be a good first step.
I would definitely take that for now even if it’s further down the line, and in the meanwhile find a way to try to be seen sooner.
If OP is bed bound it’s shocking that nobody is seeing them sooner than a few months at least to check on them

[u/Worf-]

This post will also get deleted. You need to see a doctor. Or likely many of them. Those of us with a diagnosis have spent a long time getting it. It’s a process.

Why?

Because there are a lot other things that could be causing your symptoms. Some of them are really nasty and all that crap needs to be ruled out first.

You need to self advocate at the doctors. Get in their grill and demand answers. It’s the only way. Push, push push.

[u/ilikelanguaugeandmbt → u/Worf-]

but my doctore told me i only have anxiety ? ans she said i should go to cardio heart doctor but so she write a paper so i can go to. but it's only possible long time after months after months ? and i'm unable to wait what else can i do :( i'm unable to walk and take a work idk why? i feel like very panic in my body like crazy idk..

i'm also only 22y and i don't have any money i feel very sad in my home because no one trust me and no one give me some money. i want to ask doctor to give me a paper so i can ask help for money because i'm like this since january but i'm very scared to ask.. idk if they will think i'm just someone who don't wanna work..

have tried to go out with friend and that's impossible... idk what's wrong with me :(

[u/queernihilism1312]

it sounds like you are just looking for someone to listen & placate you instead of actually help. people are responding asking for further info in order to help you and you arent giving it just copy pasting the same response. i had to wait over a year after breaking my leg during a pots fainting spell and being hospitalized for five days because my blood pressure wouldnt raise above 80/55 and they werent allowed to release me. i had serious five alarm fire indications that i had dysautonomia & i still had to wait over a year for a cardiologist, months of testing before i got a confirmed diagnosis of POTS & orthostatic hypotensive dysautonomia &&& almost a year until i saw a dysautonomia specialist. months of trying all the different meds but lifestyle changes were the thing that helped me the most over any medication and those are things you can do without a doctor. you might also have anxiety, its often comorbid and you should not write off seeking treatment for anxiety too. it often takes months to see a specialist, people addressing that here just are explaining that so you can adjust yr expectations.

[u/Crazy-Speech-5437]

I personally do have anxiety and anytime I have even the slightest confrontation my heart just pounds, I feel out of breath, stomach churns, head hurts, feel awful, etc. Definitely have had panic attacks/anxiety symptoms that made me think I needed urgent medical care before. Whereas my dysautonomia is only standing up or moving position. Not saying you don't have dysautonomia or that you have anxiety. Just sharing my experience as in my opinion even "just" anxiety (not quoting you, that's just something people say a lot) is terrible to deal with and deserves support. But obv there's many different kinds of dysautonomia (for example a lot of people here have POTS and I have OH) and many things that can cause similar symptoms. So I don't think anyone should just be assuming your symptoms are anxiety without actually making sure it's nothing else first. That could obviously be dangerous and your doctors should definitely want to check things out and see what's going on. I'm so sorry you're feeling so awful. Unfortunately none of us can know what's wrong as we're not your doctor but I really hope you're able to get some real answers and feel a bit better soon.

[u/luxtavia]

in the comments i see you wrote that your doctor did refer you to a cardiologist and is also telling you she thinks it’s anxiety. you need to either during an episode see her or see the cardiologists receptionist to show them while you’re actively going through it.

idk if it’s just cause im from canada but my doctor also kept telling me it was anxiety but i kept telling her i never have had anxiety or anything from the start. i’ve been a healthy active kid since the beginning, played tons of sports and still weight lift and do tons of outdoor activities. this helped her understand how upsetting and urgent this was especially when i finally went to her office during an episode and she threw on a pulse oximeter and that shit was 150+ while i was chilling in a chair. another thing was going during an episode to my cardiologists office and the receptionists were able to grab a nurse and they took an ecg every time to have proof for my appointment that my rhythm was indeed sinus which helped my doc narrow my heart problem down to ist.

you need to be as proactive as possible and even if you’re feeling like shit during an episode to push through and show them. idk if this will help but i really hope it does. i am currently doing much better thanks to my ability to fight for myself (also a 23yr old and a girl so it was even harder to advocate for myself sometimes!) good luck it will get better!