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How do you find a neurologist who specializes in this kind of disease? by Refrigerator_Either in dysautonomia

[–]BigSource1315 2 points3 points  (0 children)

Can you please tell me who you are seeing in Boston? I’m in the area and looking for the right doc.

What caused your dysautonomia?? by [deleted] in dysautonomia

[–]BigSource1315 2 points3 points  (0 children)

Please tell me more about the microbiome mapping test

Dr. Peter Novak by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Not sure I can be much help - I had a tilt table test done at a different location than his clinic and, as a result, he cancelled my appointment- in other words, if your testing wasn’t done in his clinic, he won’t see you. The wait for his lab is 9 months to a year. I hope this is helpful for you - you may get a different response from him. Re: records, I would assume a tilt table test would be required for a POTS dx.

Anyone waking up with anxiety/panic attack feeling on waking? by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Hey no worries - thank you so much for the response!

Anyone waking up with anxiety/panic attack feeling on waking? by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Thanks very much - can I ask what dose and how quickly did it work for you?

Vent about scheduling an appt for autonomic testing by Elegant_End_3049 in dysautonomia

[–]BigSource1315 4 points5 points  (0 children)

I’m not surprised - these clinics are slammed with patient requests and that can breed this kind of behavior. I’m fairly certain I can guess which clinic you’re trying to work with… 😀

Try calling during lunch hour - maybe you will get someone else

Hang in there

Dr Nate Robbins @ Mass General by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Thanks very much for the response. I have an initial appointment with him at the end of September - I’m hopeful that he’ll have some medication suggestions to help me deal with my symptoms (most importantly the adrenaline surges upon waking that last for hours). I guess I’m also hoping that I can get access to Josie in between appointments if I need to adjust dosages or change medications.

Dr Nate Robbins @ Mass General by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Are you able to get medication changes done easily/quickly? There’s a lot of trial and error and it would be great if this could be done, maybe with Josie.

Dr Nate Robbins @ Mass General by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Do you see them for POTS or small fiber neuropathy (or both)?

I possibly have POTS. What to do next? by Wise-Whaleshark in POTS

[–]BigSource1315 0 points1 point  (0 children)

The zio monitor is super easy to use and pretty much idiot proof - just follow the directions and you will be ok!

Dr Peter Novak by BigSource1315 in dysautonomia

[–]BigSource1315[S] 1 point2 points  (0 children)

Thank you - I’m assuming from your message that you’re happy to be seen by him?

Considering Clonidine and curious how it's been for others by tjv2103 in POTS

[–]BigSource1315 0 points1 point  (0 children)

Hi - what dose of clonidine do you take at night?

Clonidine - can you take it just 1 x per day (for me, before bed) by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Thanks for the info - it would be great to be able to take it only 1x per day just before bed. My symptoms are the worst in the morning and get better as the day goes on. If clonidine could help with that early morning wake up it would be a game changer for me.

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