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BlondeGirl1216

469d

Hi, I am new to the app. Sorry for the long post/rant. I have confirmed diagnoses of Constrictive Pericarditis, POTs, MCAS, Chronic Costochrondritis and hypermobility. Its taken me 5 years to get these diagnoses. It feels as if as soon as I got diagnosed with these conditions by the consultants I was pushed back to my GP. No treatment plan, no steps forward and no future plan. Talking to my GP about the fact the tablets/treatments I am on aren't working is like talking to a brick wall. They either say they don't have the knowledge to do anything and will need to refer me back but as I have a diagnosis it might take a while. Or worse they say "Oh its 'health anxiety' or depression and that my conditions/symptoms just require therapy to treatment them" or " I'm young it will pass". Whilst I do appreciate that health anxiety is a real thing and possibly a factor, the only reason I have health anxiety is because no one seems to be listening or treating my very real conditions and symptoms. My whole life has changed so yes I am depressed/anxious but my tachcardia, hypotension, allergic reactions and passing out aren't a figment of my imagination. I have been unable to work due to passing out and prolonged illnesses. I am scared I will lose my job if I cannot get my long term conditions under control. The worst thing is the treatment for POTs could be making my Pericarditis worse and the Pericarditis treatment could making the POTs worse. I feel like I am in a constant negative feedback loop with no end in sight and the people who are suppose to throw me a lifeline have cut it up with scissors. I honestly don't know what to do.

Top reply
    • BlondeGirl1216

      468d

      @chocolatetruffle Unfortunately my town has only 3 GP surgeries who are run by the same management team/senior doctors They have a monopoly on the services here. The NHS is amazing but its so stretched at the moment. I did see some in London on my private health insurance I have, to get my diagnosis but no ongoing plans/follow ups were arranged. As soon as it was classified as a long term condition it wasn't covered by my policy. So I am now back on the waiting list to see the consultant and as I have a diagnosis I am not deemed as urgent so it could be another 18 months. I just hate that my local doctors think my symptoms are in my head. I did my party trick for the local last time I saw him. I was sat down with heart of 95 bpm and then stop up. I had him listen to my chest and feel my pulse. It went to 180 bpm within a minute of standing. He was horrified and tried to get me admitted to hospital. The hospital told me to go home after I wait 12 hours in A&E/ER as there was nothing they could do and I wasn't having a heart attack. That I should try and relax and try not to get anxious 😒😥 Just feel helpless at the minute.

    • chocolatetruffle

      468d

      I'm so sorry you're going through this. I was diagnosed a couple years ago with pots, although I've had symptoms for many years. I've been diagnosed with some other things since, and I've been trying to get answers for my many other issues for a while now. I've run into the same things you're talking about, as well as doctors just not even trying to help, and just blowing me off - and sometimes they just don't even know what to do for me. It's so frustrating, and I don't know what to do right now either. It's a really crappy spot to be in. I assume you're in the UK (I figured by your use of the term "GP") - are you able to possibly switch to another one? I know that's more difficult over there, and I'm not sure exactly how the medical system works where you're at, but I wonder if you could possibly seek out a different GP and try to get them to refer you to the specialists you need. For pots, at least, an organization called Dysautonomia International has a list of doctors in every country who specialize in pots. There are a few in the UK, so that might be something to look into just in case.

      • BlondeGirl1216

        468d

        @chocolatetruffle Unfortunately my town has only 3 GP surgeries who are run by the same management team/senior doctors They have a monopoly on the services here. The NHS is amazing but its so stretched at the moment. I did see some in London on my private health insurance I have, to get my diagnosis but no ongoing plans/follow ups were arranged. As soon as it was classified as a long term condition it wasn't covered by my policy. So I am now back on the waiting list to see the consultant and as I have a diagnosis I am not deemed as urgent so it could be another 18 months. I just hate that my local doctors think my symptoms are in my head. I did my party trick for the local last time I saw him. I was sat down with heart of 95 bpm and then stop up. I had him listen to my chest and feel my pulse. It went to 180 bpm within a minute of standing. He was horrified and tried to get me admitted to hospital. The hospital told me to go home after I wait 12 hours in A&E/ER as there was nothing they could do and I wasn't having a heart attack. That I should try and relax and try not to get anxious 😒😥 Just feel helpless at the minute.

    • DieselWeasel

      469d

      This is / was almost my exact situation. I dm you a long winded history.

      • chocolatetruffle

        468d

        @DieselWeasel were you ever able to make it out of that situation/did you find a solution?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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