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Tentative Pots Diagnosis


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A little background: I'm a junior in high school and have suffered from idiopathic chronic daily migraines (and they are every day) for almost 4 years. I've done nerve blocks, Botox, acupuncture, physical therapy, DHE treatment, and taken every drug a myriad of doctors could think of. I'm currently only down to two drugs; Effexor (which doesn't help, but causes me to have severe withdrawal symptoms when I go off it) and Atacand (also ineffectual so far).

Recently, my neurologist at John's Hopkins gave me a tentative diagnosis of POTS. By tentative I mean that he has not tested me for it and is diagnosing purely on my symptoms. He decided against doing a tilt table test and instead wants me to start treatment. That treatment being increased salt intake, increased fluid intake, exercise that brings my heart rate up to 1.8 times it’s baseline, salt pills, and fludrocortisone.

This diagnosis would make me the third person in my family to be diagnosed with POTS, including my sister and our 2nd cousin. My sister is a senior in high school who was diagnosed with POTS last year and is struggling to actually attend school (and not cyber school like I've had too). Unlike her, I do not suffer from syncope, but instead a sort of dizziness similar to the feeling of being very motion sick (among many many other problems).

So that's my long winded introduction. :) I hope everyone here has a wonderful and hopefully pain free day!

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Welcome from a fellow Marylander :)

My 17-year-old daughter was diagnosed with POTS in summer 2011 at Children's Hospital in DC. She takes 0.1 mg Florinef and Adderall XR daily. She also experiences migraines, but has found some relief by being on birth control pills.

I hope your new treatment makes a difference and you soon feel a lot better!

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Welcome!

I'm also a Marylander.

My sister was diagnosed with POTS w/o a TTT. I had already been diagnosed and then when she had symptoms a specialist diagnosed her without a test. A TTT does not necessarily give more information that is needed to start treatment. I hope the treatment helps and you start to feel a lot better soon!

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Welcome.

Just wanted to say I had a terrible time coming off effexor made me extremely dizzy and emotional. Took me ages to do it slowly dropping the dose month by month. Just wanted you to know you arent alone.

Also my sister has POTS too (I have it) although we are both old ladies compared to you lol!

Rach

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Welcome to the forum. My 17 year old son, a senior, also has POTS and attends cyber school. Migraines was one of his first symptoms in the 7th grade but after taking Topamax they stopped. He had to stop taking topamax from all the side effects, but thank goodness the migraines didn't start back up. Fludrocortisone also greatly helped his dizziness, we just can't find anything for the nausea.

Christy

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Thank you everyone! :) I actually live in Virginia, my neurologist is just in Maryland.

Welcome from a fellow Marylander :)

My 17-year-old daughter was diagnosed with POTS in summer 2011 at Children's Hospital in DC. She takes 0.1 mg Florinef and Adderall XR daily. She also experiences migraines, but has found some relief by being on birth control pills.

I hope your new treatment makes a difference and you soon feel a lot better!

Thank you very much! I believe it was Florinef my neurologist mentioned.I hope you daughter does well!

Welcome!

I'm also a Marylander.

My sister was diagnosed with POTS w/o a TTT. I had already been diagnosed and then when she had symptoms a specialist diagnosed her without a test. A TTT does not necessarily give more information that is needed to start treatment. I hope the treatment helps and you start to feel a lot better soon!

Thank you very much! That's basically what my doctor said about TTTs.

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Welcome to the forum :)

Interesting story. How do you feel about him being against doing a TTT?

Thank you! I don't know how I feel about that. It certainly doesn't sound like a pleasant test, but it would be nice to have something definitive after being stuck with "idiopathic" all these years. I understand that TTTs aren't definitive though.

Welcome! Sorry that you live in pain each day. We can relate. Nice to meet you.

Thank you! It's nice to meet you as well!

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Welcome.

Just wanted to say I had a terrible time coming off effexor made me extremely dizzy and emotional. Took me ages to do it slowly dropping the dose month by month. Just wanted you to know you arent alone.

Also my sister has POTS too (I have it) although we are both old ladies compared to you lol!

Rach

Thank you! Especially for the sharing your experience with effexor. I've given up each time I've tried to get off of it, simply because adding more pain and knowing you can stop it is just hard psychologically.

Welcome to the forum. My 17 year old son, a senior, also has POTS and attends cyber school. Migraines was one of his first symptoms in the 7th grade but after taking Topamax they stopped. He had to stop taking topamax from all the side effects, but thank goodness the migraines didn't start back up. Fludrocortisone also greatly helped his dizziness, we just can't find anything for the nausea.

Christy

Thank you! I also had a terrible time with Topamax and was actually told I was allergic to it. I also experience a lot of nausea. I have problems whenever I eat anything and my stomach never really feels settled. Good luck to your son!

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