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871d

I was diagnosed with POTS and EDS in 2020. But before then (even though I was symptomatic) I started college at 16, graduated with a 4.0, lived in London, worked for major establishments in my field, and was looking at a very good career in the field I dreamed about. I’ve lost all of that; and I can hardly do it for fun because of fatigue and brain fog. Im living with and off my parents. I’ve tried every med with no help and my doctors refuse to do infusions even though they are the only thing that helps because of the sepsis risk. How do you deal with that loss and look forward to the future?

Top reply
    • LeopoldTheRidiculous

      870d

      Kayleezie - can I ask what the cause of your POTS is diagnosed as, and how it was diagnosed?

    • LeopoldTheRidiculous

      870d

      Kayleezie - can I ask what the cause of your POTS is diagnosed as, and how it was diagnosed?

    • Chronic_In_College

      870d

      I understand this feeling. Everything mentioned above is a good place to start, but have you tried the dynamic neural retraining system (DNRS)? It’s an online limbic system retraining course. DNRS and physical therapy really helped to improve my pots symptoms. It can be life changing for people and it’s far less expensive than injections. Personally, it’s my other conditions that are now holding me back. I try to remind myself that everything will work out and this is giving me unique insight that I will use in the future. Hoping it will one day be applicable to my career or be able to be used to help others. With that said, I’m in a major depressive episode and that’s a part of it too. It’s helpful to connect with others who understand and who can remind you to keep going forward. It comes and goes in waves, but you start to find new goals and purposes.

    • princessbun

      871d

      I feel this❤️ I can hardly give advice considering I am in the same spot. Some things that help me -practice mindfulness -research + become an expert in your condition in order to help yourself -follow others with your illness(es) on social media to help feel less alone -KEEP TRYING to find doctors that will listen to you and help you!! - I personally am seeking out therapy this year to help me with this same feeling of loss. My anxiety has skyrocketed since being ill and it just gets to be too much sometimes.. I will never stop scheduling doctor appointments and testing until I figure this out. I have seen probably over a dozen doctors and got probably 50 tests done in the past few years.. you can't give up because this is YOUR life, and there IS a way you can overcome this and enjoy it again.

    • Kayleezie

      871d

      I thankfully found the cause to my pots in June of last year. If I didn’t find the cause I think I’d be losing my mind I’ve had pots for about 13 years, Its a long Road but you have to keep advocating for yourself to try to find the cause so you can get back to normal and live your life. I will always wholeheartedly believe that there is a cause to these issues.

☝ 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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