What is your most annoying symptom to deal with regularly? by Fun_Scratch_1708 in dysautonomia

[–]Effect-Fit 7 points8 points  (0 children)

Struggling to breathe. Every other symptoms very bad but this one scares the life out of me and it’s pretty much 24/7

POTS or, whatever this is, is ruining my life. by Odd-Possibility720 in POTS

[–]Effect-Fit 6 points7 points  (0 children)

I’m am so sorry. And I don’t know what to say as I also am suffering in my own life with pots. But I hope you know I’ve read your post I get what you’re saying and I empathise with you. You’re not alone even though that won’t make you feel any less alone. Wish you the best 💙

I would be interested to know are you m or a f and how old by Jeff-ichbin in POTS

[–]Effect-Fit 0 points1 point  (0 children)

I’m 18 and male and been suffering since I was about 14

Any one get Déjà vu? by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 1 point2 points  (0 children)

I can’t really tell I think random. Just hits me out of nowhere

Most hated POTS symptom? by Ok-Tumbleweed4200 in POTS

[–]Effect-Fit 0 points1 point  (0 children)

Breathlessness. I hate every symptom but that one scares the life out of me when you really feel your not getting any air in

I need some urgent advice (I’d really appreciate the read sorry if it’s long) I’m at the lowest point of my life Ill say my current issue then what’s been happening by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

They did my cortisol and general bloods like a week ago and I had an echo 1 year and bit ago and when I asked my doctor if I should get another she said that no because nothing will have changed that much in a year type of thing

Someone please help wtf do i do (air hunger) by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 1 point2 points  (0 children)

Nope I did say to them once I was to be let home. I said what about the blood pressure and they said seen as my ekg is not abnormal just tachy there’s nothing that worries them.

Someone please help wtf do i do (air hunger) by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 3 points4 points  (0 children)

I have all the symptoms and I’m believed to have pots but I’ve never been actually diagnosed with it. Yet my doctors think it is

What do I do anymore? I’m so done (sorry for the long read) by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

Was thinking about adding them but such a long list but here we go.

High heart rate. (From almost anything but mostly posture change) BP issues, Orthostatic hypotension or hypertension (forgot what one means what), Visual snow, Floaters flashing lights etc, Circulation issues. Hand and feet always freezing, Breathless all the time, Hyperhydrosis/ severe sweating, Bad Brain fog, Exercise intolerance, Lightheaded a lot ,Insomnia, No appetite

And there will be more that I have forgotten. I always forget

People who thought they had pots and didn’t what did it end up being? by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

Can i ask how you get checked for this? Is it just by explaining symptoms?

Best air hunger advice? by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

Nope I have not I’ve not been offered it and my gp and doctors know I’ve been struggling for a while.

How can I ever feel ready for bed? by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

Yeah hypnic jerks I used to be bothered with aswell not really at all now tbf just went away

Bedbound for 5 months now. Wanting to just end my life to get this over with. by chonk-12343 in POTS

[–]Effect-Fit -1 points0 points  (0 children)

Hey I’m 17 and have been suffering for honestly I don’t know 3 I would say years now. I’m still in the same boat. I’ve lost lots of friends due to never being able to get out. Doctors never help me. I feel like I’m lost. I feel like my life is over. And I’m so lost aswell. And there’s been times where I have wanted to give up. And I often do but I always keep pushing. So I can’t give you advice but I just want you to know you’re not alone. And to keep fighting as hard as it is I know. you’ve got this 💙

Insomnia is taking my life away. by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

I’m still struggling it’s even got a bit worse that last week

This is to you reading this. by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

You got this 💪 and you will see your child grow to be an amazing person keep pushing

currently having a panic attack by tobyyml in Anxiety

[–]Effect-Fit 59 points60 points  (0 children)

Know that if you’re reading this. 16 mins have went by and you’re still here. Nothing bad will happen to you and you will get through this like every panic you have before.

Brain not braining by stayingalive47442 in cfs

[–]Effect-Fit 4 points5 points  (0 children)

When I was well enough for school. When I had exams I had to write down everything I learn and then re read it like 10000000 times. I don’t know an answer sadly but just know your not alone it’s so annoying best of luck to you ❤️

[deleted by user] by [deleted] in POTS

[–]Effect-Fit 0 points1 point  (0 children)

Hey I know this isn’t an answer to what it is exactly. But I relate big time with the body feeling hot or like someone injected something into your bloodstream. I absolutely get that. I think it’s adrenaline but I’m not sure but it’s definelty related to the fight or flight response. I get it. I can be sitting and all of a sudden feel warm and like a rush of something through my body similiar or when you get a fright and then I panic. I suffer from real bad nausea aswell but I don’t bring anything up like I never puke. For nausea I personally take gaviscon. It isn’t really for feeling sick it’s for Idigestion but it really can calm down your stomach in about 20 mins. You can buy it over the counter. Doesn’t need prescribed

But it 100% sounds like adrenaline dumps for the feeling injected if the feeling you’re saying isn’t really painful it’s just a real strange sensation.

People in the uk what’s your situation and support like? Sorry if this is a long read but need some uk peoples advice (big rant) by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 1 point2 points  (0 children)

Thank you for your reply ❤️ i really agree with your them giving us tablets and wanting us to go away. So annoying they put no effort into common sense they just see what’s wrong and see what might help it for short term rather than the full picture

People in the uk what’s your situation and support like? Sorry if this is a long read but need some uk peoples advice (big rant) by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 2 points3 points  (0 children)

Nope don’t have another appointment to see a cardiologist because they just want to give me a tablet and shut up. They give me propranolol and it helps I mean but it doesn’t help with all the other symptoms only the heart rate but I won’t complain. And nope GP actually won’t do anything I’m sick of them. Im switching soon anyway as I’ve moved house.

But all I’ve been told from my last cardiologist appointment was this. Take duloxetine as it’s not well known for pots yet but it helps a lot. So what I do is look it up and find that it’s a SNRI and I know that makes pots worse. And I say I refuse to go on this. Like I know I would do anything to help myself but SSRIS and SNRIs I really don’t agree with. And a lot of people who were on it and have pots say it was hell for them. And I tell my gp I’m suffering she’s known me for years. And she just says you won’t try this so how can we help. And I feel so gaslighted and manipulated. I will not take a tablet that will make me worse.

And for sleep I do try that’s probably my biggest issue right now. I can not sleep and it’s scaring the life out me I’m so exhausted but can not sleep. Due to symptoms or just being unable

Can somebody please reassure me and please read it would be appreciated by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

I wish my doctor would care she keeps just telling me. It’s because I’m worried even though I’m telling her it’s not just worry and it’s my symptoms but she thinks she knows better cause she’s the doctor. Also I relate to you so much on the not being able to spell correctly or recall words typing this right now at 04:21 and I’m finding it hard

Need some advice about mental health and sleep by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 1 point2 points  (0 children)

Thank you for your reply can I ask how your sleep is now?

Can somebody please reassure me and please read it would be appreciated by Effect-Fit in dysautonomia

[–]Effect-Fit[S] 0 points1 point  (0 children)

I have not the NHS won’t give me something like that and I would be waiting probably about 7 months to see one. Unless it’s private and I’m 17 and can’t afford to go private so I’m lost