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What after gammacore?

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#1 Sun, 28/03/2021 - 12:32
Last seen: 3 years 2 months ago
Joined: 09/09/2020 - 02:36

What after gammacore?

Since my last post, loads of things has changed, some for the bad, and some good.

I was admitted in hospital in early Jan for a heart block, related to the verpamill, I'm still waiting for the heart investigation results, as they have officially withdrawn me from verpamill, sumatriptan. They left me on topiramate which was ineffective. I had my first appointment with Queen square hospital and this was roughly a week or two before I was admitted in hospital for my heart block.
After I was discharged I was left to suffer from these attacks with no alternative apart from topiramate which I felt more of the side effects than it working.
I do have my static high flow oxygen at home, but as I was using 3 tanks a day and was waiting to hear back from Queen square regarding the Gammacore, I Basically was just house bound to oxygen which was not effective 80% of times, and just made the pain more manageable.

Fast forward to March.
I was discharged from my old neurologist, which in his last efforts he pushed cardiologydepartment and Queen square and few days Afterwards I got the Gammacore, and appointment for cardiology within the same week.
But he also had concerns for my lungs as Im using oxygen quite frequently(I also had a oxygen nurse call me last week to ask why I Am using so much oxygen)
And as I live in London, unfortunately I'm not eligible for Emgality or demand Valve oxygen.
I wanted to know is there anymore options to stop or help me with this terrible condition, I had to take a break from college which I may not finish this year if I can't get my attacks and conditions under control.

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