Help! Just diagnosed with POTS

General
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I am six weeks post decompression. I had hoped the surgery would've improved my transient tachycardia on standing, but it didn't. I think it has gotten worse. I had declined a cardiology consult prior to surgery in hopes it would improve. Did have an ekg, echo and holter monitor at that time which all came back "normal", although holter did record rates in the 140's. So I finally saw a cardiologist last week who believes I have POTS. I did not have a tilt table test done. I guess it would be considered a clinical diagnosis. He had me start taking salt tablets and metoprolol. The metoprolol did reduce my heart rate, but I felt horrible on it. I honestly feel better just dealing with the rapid heart rates. So I stopped the metoprolol. I will see the cardiologist again tomorrow. I anticipate that he will try me on a different med. I am just so reluctant to try any meds since I usually have some bad reaction or outcome. I am so fatigued. I have to ration my energy throughout the day. I am supposed to return to my part-time work in 12 days. I know POTS is an autonomic nervous system disorder, so I wondered if it would be better to have a neurologist experienced with POTS as opposed to a cardiologist? (Plus I am also still having occasional migraines.) I did find an experienced POTS neurologist through dinet.org, who also happens to be near me (small miracle!). I got an appointment with her in 1 month. Any advice?

On another note, since surgery, I've had a numb area on my scalp. Its about 4-5 inches in circumference. Has anyone else had this? Does it ever resolve?

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I had a couple of different numb areas on the back and side portion of my scalp. I am now almost 4 months post op and they have almost completely resolved.

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My 17 year old daughter was also recently diagnosed with POTS and they are attempting to get a tilt table test approved so I appreciate the suggestion to ask about stopping medication to get accurate test results...makes complete sense but probably would not have thought of that on my own. That's one of the many things I love about this group - there is always someone who has already been through it to give words of advice!!

Beeba said:

Ask if he thinks it would be okay to try bystolic. The electrocardiophysiologist that I saw who specialized in dysautonomia said this is his first line med that he tries. I was on metoprolol as well it made me worse so logically they doubled it(sarcasm!!) and I got worse again. All meds made me worse. 24 hours after starting bystolic I improved 10 fold. That added to my argument for dysautonomia. Go see cardiologist for the change but I do recommend seeing specialist. More than likely your heart is normal just neurally mediated so you need a med that hits that. But if a tilt test is ordered ask to stop meds for it or it will mask accurate results.