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Brokenandalone

Spiraling..

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I’ve been dealing with potsy symptoms for 10 years, and got a diagnosis about 2-3 months ago after severe episodes and many ER visits that even after being diagnosed and being unable to get out of a bed I was kicked out and ended up in another hospital where I left after being traumatized even more and stamped with a somatic disorder. (After I’d already had a pots diagnosis)

 

I saw small micro improvements with some meds here and there but recently other worse symptoms have caused a spiral of depression and hopelessness.

 

I’ve got pain I can’t do much with, almost no support, family that think I’m a manipulator or in best case think I may have a potsish syndrome but it’s just “basically a panic attack”.

 

things keep shifting and recently my gut seems to have shut down and I can’t keep any fluids in, severe gut burning,  lower back pain, now vomiting that is getting worse if I try to eat or drink anything every morning.

I’m pretty sure I have ptsd from the hospital stay, And the way I was treated.

 

I probably need to try IV fluids but I’m so scared of the hospital now that it sends me basically into a spiral when I have a flare.

 

Ive seen a specialist that was nice but didn’t have much time to spend with me and who I can not really talk to, I have no other doctors that really buy into how bad it is or even know what it is yet.

 

im basically bed bound 99% of the time and do as much sitting and moving and walking as I can (it was slightly better before this crash but not much.

 

I have one close relative to help me some of the time who’s health I feel like I’m deteriorating with all my mood swings and pain.

 

I don’t know what to do to get away from this precipice. The agony and suffering seem interminable.

 

I’m not even sure it’s regular pots because the first hospital I ended up getting admitted to was pretty much convinced that I was just an addict coming off something for days and weren’t even sending doctors to see me for 4 days. (I’ve never even done light recreational pot and even stayed away from basic painkillers most of my life - and since I’m on gov insurance they pretty much didnt do any of the normal tests you might expect. 

 

Complain of extreme heart pain, and you have a referral to a cardiologist because of a heart murmer? No sorry no cardio for you. Extreme gut pain that would Warrant an ultrasound or a ct? Sorry bub, we are canceling that eeg too.

 

Things aren’t working and worse symptoms keep appearing to the point where my hospital induced ptsd and the lack of support and help are cracking my sanity. I don’t want to end up in a psych ward where they will torture me with meds that will kill me slowly and I feel I have no one who will go to bat for me if I’m critical enough to end up in the hospital. My emotions are so shredded that if I end up in there I won’t be composed enough to defend or advocate for myself.

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I am sorry you feel this way. I remember in the begging thinking that they would only find out what was wrong with me when they did my autopsy. It has taken a lot of perseverance and patience to get my diagnosis. I am much better now. I have a group of doctors that listen to me and help me. I would start your search for a good PCP to start with. Don't be afraid of the hospital. If you need to go then go. But start finding good doctors to help you out. At the very least they can get you on some meds and get some basic tests done to see what is or isn't going on. Don't give up, it may take a while. 

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I'm very sorry that you're struggling like this. I too spent many years looking for an answer and never finding one - instead kept coming across doctors that said I was just "seeking attention". I did eventually find an amazing family doctor who supported me every step of the way and tried his hardest to help me find some answers. That eventually lead me to my current cardiologist who diagnosed me with POTS. I understand how life altering this condition can be - we all do - so please don't give up in your search for some answers and more importantly adequate treatment. Keep advocating for yourself, compile some good information/documents/journals that you can take with you to future appointments. Some physicians out there like more than just a verbal complaint of symptoms, they need some sort of physical proof, so those might be helpful for you.

When you find a doctor that will listen to you, I promise it will all be worth it. That sense of relief when somebody finally understands and doesn't think you're on drugs (like I was accused of  many times) feels so great. Be well, best wishes - Keep fighting! 

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Dear @Brokenandalone - I have been in your shoes. The medical community treats POTS patients like that ( dismissive, rude and ignorant ) because they do not understand POTS and also do not want to hear about it. I am sorry you had these bad experiences. Having said that: you need to be brave and go to the ER for your vomiting, pain etc. This will be recognized by the ER docs and should be treated with testing and - most importantly - IV fluids. Once you had them you should feel much better, physically and emotionally. The you should roll up your sleeves and find a good PCP. Ask around and see who has a good one to recommend. Make the appointment and go there with a list of all your symptoms ( including your fear of hospitals and your depression ). Don't worry - that does not make you a psych case - it is understandable to develop depression and anxiety from our symptoms alone, not mentioning the added stress from being dismissed. I too was depressed and anxious when I could not find help and did not understand what was wrong with me. -- Please - be brave and get this current medical problem checked out and fixed, then go on from there. We are here for you to listen and share experiences but YOU have to take the step to go to the doctor. Be well!!!!!!

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I agree with what others have said.  You said you have seen a specialist.  Did they prescribe any meds?  It can take time and trial and error to find what works.  Most people do improve over time.  It does take patience, unfortunately most of us do not improve quickly.  I just went through a bad relapse earlier this year, and then improved again.  Going through that made me realize that many doctors are more aware of this condition than they were 15 years ago when I was very sick before with POTS.  However, there is also dismissiveness still, and I think especially in the ER where doctors are trained to save lives not to manage chronic conditions, no matter how severe.  I'm sorry you experienced that.  The thing that can often help the most in the ER is fluids.  If you have seen a specialist perhaps he or she could help you get IV fluids?  This can be very beneficial at least as a short term solution.  When I had my relapse I got IV fluids 3X a week and that helped tremendously.  At least I could stand up a bit and manage alone in my house.

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I have sleep apnea and my cpap machine is picking up apnea’s over 4 mins

Everything is coming apart in my brain - emotional control memory everything

i woke to my apnea machine beeping once with severe numbness and felt the circulation slowly come back

I need a bipap right now I think 

i feel my brain failing me my body is coming apart how do I get somone to see this and pay attention the cognitive and memory decline over the last couple of days is insane

 

 

 

 

 

 

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I do feel for you. I don't have it nearly as bad as you've clearly got it currently but I've also experienced, as most of us have, dismissive doctors, especially ER departments who are just not geared up at all to understand Dysautonomia or give us appropriate treatment / guidance. 

The only thing I've found that has helped is to try and stay calm when dealing with Doctors and other medical professionals, try not to seem anxious, nervous, upset etc. As hard as it is to do, and believe me I know, the more calm and rational you come across, the less likely they are to start dismissing you as having panic attacks or other mental health issues. It's a chicken and egg situation and although the Dysuatonomia often can lead to health related stress and depression, it's not the cause, but it's easy for Doctors to see someone panicking and afraid and put it down to stress / anxiety.

But as others have said the best thing to do is find a good doctor / cardiologist who understands pots and who you can trust, it can be hard to do but searching online for a doctor / cardiologist with an interest / specialty in the subject is the best way to go.

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Do you see a specialist for your sleep apnea?  I would contact the doctor who diagnosed you or you are under treatment for regarding your concerns and symptoms.  I think you noted you have seen a specialist in dysautonomia?  Has this doctor been helpful?

We maintain a list of specialists here if this would be helpful:

https://www.dinet.org/physicians/

Dysautonomia can cause severe and disabling symptoms.  Hope you can get help from a specialist soon.

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