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Symptoms Without High Heart Rate And Lost.


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Hello everyone!!! I am newer here, and feeling a bit lost with all of this. I have been dealing with these symptoms since May 2015. I had a negative tilt table, but I have a lot of the symptoms of dysautonomia. I had a full cardiac work up to find atrial tachycardia and an ablation in October 2015 where they did the AVNRT ablation. My EP didn't think I had POTS but had been tossed around a few times with my old EP. I was good for about 2 weeks. Then went into IST. My symptoms were always coinciding with my high heart rate. I was doing good finally on Ivabradine from mid Nov to 2nd week in January. Well then all of my symptoms came back but my heart rate is controlled. I am back on sick leave from my full time job (nurse). Which my HR told me by the end of the month if I don't come back, my manager could fire me if he wants too. All because I have used my 12 weeks of sick leave for the year in different stages of all this (I went 5 years of never calling in before all of this too!) I have a very hard time giving up my job because I unlike most people, I LOVE my job. It has been my dream to be an ICU nurse since I started school and was lucky to get the job right after I graduated.

Every doctor I have been to thinks I might have it, but don't want to give me the full diagnosis. (so far GP, Cardiologist, EP and Neuro). I just saw my neurologist yesterday for the first time. He said my Neuro exam is normal but will continue to rule out any neuromusclar disorder. But he said if I want to continue to see if I have dysautonomia/POTS to go to our big teaching hospital but it could take 4-6 months to get an appointment there.
In the past month, my symptoms are getting worse by the week. I just started having the beyond awful headaches, and gut wrenching nausea, dry heaves and stomach pain. I am on Ivabradine, Midodrine, and started on Prozac. I can't take calcium channel blockers or beta blockers and didn't tolerate fludrocortisone (stomach ulcer). How do I just wait all that time when it is only getting worse? Like what do I do in the mean time? Any recommendations? My GP keeps apologizing to me because he said all of this is out of his scope but he at least believes me.
How long have you had to wait from the time your symptoms started to actually getting a diagnosis and treatment that started to work? Sorry for long post, just vented because I am a little frustrated and lost of what to do except wait and suffer.
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It's frustrating for sure! I have been symptomatic for 2.5 years and still have no diagnosis (been through every test I know of) still with no answers however I have found things that have helped and my quality of life is better and have more good days than bad but still not where I was before. I play close attention to everything I eat adds how it makes me feel and everything I do and how it affects me and have found a good road to be on.

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I would suggest making the appointment as soon as possible. I went undiagnosed for almost 5 years. Many times I felt hopeless and thought it was all anxiety etc but then I finally decided to keep pushing to get answers and I'm so glad I did! Fight for yourself because you deserve answers and help. You can also check the physicians list on this site and see if there is someone in your area you could see sooner.

I'm sorry about your job situation. I'm lucky that I have a desk job or I wouldn't be working at all. Still everyday is a struggle. I really hope you get the answera you need!

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