jpjd59

So happy that you were pleased with Dr. Jaradeh's office. My daughter has met with him once and is due to go back in a month. He seems very knowledgable about POTS.

When you meet with him, let me know how your appointment goes.

Our thoughts and prayers go out to Kayla and her family.

Wow, I had no idea you could train dogs to detect such things. I guess they truly are "man's best friend".

Issie:

Yes, something on the internet said that licorice root acts like a MAO inhibitor which would help NE levels. I was uncertain of this because I, like you, had heard that it was like florinef.

Has anyone tried licorice root to combat the surges of NE?

Welcome! Wow, how do you do 60 hours a week? My daughter has POTS and she can barely get out of bed and walk around the house.

Kimbellgirl:

Unfortunately she has been told not to take Klonopin because in very few people it can have a side effect of causing severe depression and suicidal thoughts and she has had severe depression reactions to two other medications that also had this side effect warning. Darn!

Dizzysillyak:

She has eliminated all caffeine from her diet because it made symptoms worse.

Issie:

I'm trying so hard to understand all of the chemistry surrounding this mystery called POTS. So, because my daughter's NE levels are too high when standing, should I be looking for a drug/supplement that blocks NE or one that stimulates NE release (like Butcher's Broom)?

Sorry to be so dense but this is all new to me (I knew I should have taken a chemistry class in high school!!)

Pam

RichGotPots:

She had levels checked at Mayo Clinic in Arizona. They said her NE levels were too high (when standing). They went from somewhere in the 200s when laying down to over 800 when standing. I guess that is why the Stanford doctor thinks she is HyperPOTS.

Good luck with your TTT this week!

Dr.Jaradeh, who used to be at a clinic in Wisconsin is now at Stanford. He is a neuro who specializes in theses types of disorders. I don't no if they have set up an actual "dysautonomia clinic" but he is very knowledgeable about POTS.

kjmom:

Thanks for your response! Horrible thing at 10 years old to have to go through (well, horrible at any age really) I hope she starts to feel better soon

Pam

Thanks Issie!!!

What a great experience, not only for the girls, but for the moms also. It's always nice to talk to another mom who understands how hard it is to watch your child suffer with POTS.

kjmom:

My daughter said she feels the anxiety/panic/depression in waves (she even describes feeling like her brain is on fire). We have tried meds, herbs, breathing techniques - nothing has worked. We are out of ideas.

How long has your daughter had POTS? Do you know what kind of POTS she has (for example, my daughter has HyperPOTS from a virus).

Pam

Issie:

I'm kind of confused about the doctor's report. He says that she has HyperPOTS because of her tachycardia and high standing NE level - but her blood pressure is not high. From reading posts on the forum you seem really knowledgeable about POTS. Do you know if you can have HyperPOTS without having high blood pressure?

Emma246:

Yes, she was on Fludrocortisone for 4 months (and actually didn't notice depression at first). Seemed to occur after taking it for months and get continually worse - that is why the Dr. took her off of it.

I'm glad that it works for you! Everyone reacts so different to things - I guess it is just trial and error.

My daughter was diagnosed with POTS in November 2011. At that time I didn't realize there were different kinds of POTS. She just received copy of medical records from a neuro specialist in POTS that she recently saw and it says that he believes she has "hyperadrenergic POTS".

From what I can tell from research, hyperadrenergic POTS usually comes on gradually. In her case, it came on suddenly after a virus. Does anyone else have hyperadrenergic POTS from a virus? If so, what have you found that works for you (because she has not been able to tolerate any of the drugs that they have tried to give her).

RedOctober:

How are you feeling after trying St. John's Wort? I see you mentioned taking it for serotonin/norepinephrine support. Are your levels too low or high? (My daughter's norepinephrine level is too high when standing and I am curious as to whether St. John's Wort will help since she is having anxiety/depression)

Kimbellgirl:

Unfortunately beta blockers make her POTS symptoms worse. I believe that the anxiety/panic/depression is caused by her norepinephrine levels being too high (in the 200s when laying down - going up to the 800s when standing) but I'm just guessing this is the cause.

My 23 year old daughter has POTS (sick since July 2011 and diagnosed in November 2011).

Dr. initially put her on Fludrocortisone with caused MAJOR depression. Dr. said that is a rare side effect and that she should not take any other drug which has depression as a potential side effect..

Ever since then she has had terrible anxiety/panic. She doesn't want to be alone and she has mood swings. .

Anyone else experience this? She is extremely sensitive to meds and at the beginning they tried SSRIs and SNRIs but they made her worse. She is taking Vitamin D, B12 and magnesium. None of this seems to help.

Any ideas of what would help? Any natural remedies/supplements?

Arizona Girl:

Just curious, since your results were similar to my daughter's results, what have you found helps your POTS symptoms (and how long have you had POTS?)

Pam

My 23 year old daughter has POTS and, along with a long list of symptoms, has SEVERE mood swings and trouble sleeping. Her doctor said that when she had her autonomic testing that her norepinephrine levels were too high when she stands (along with her heart rate being too high also when she stands).

I read some info on the internet about L-Theanine helping lower norepinephrine levels and lowering heart rates. Has anyone tried this? I would be interested in hearing good and bad reactions.

Thanks!

Pam

Kayla:

I'm sure that your mom isn't giving up on you - she's is probably just frustrated because she doesn't know what else to do. (I am the mom of a daughter who has POTS and it is frustrating not to be able to help your child). Don't give up!!!

Kayla:

So sorry to hear that you are in the hospital. We know that you are not faking the POTS or GI issues. I think the doctors think that it is all in our head when they don't know what else to do.

Hope you feel better soon!