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McBlonde:

I'm so sorry you are experiencing this. I wish I could explain why it happens but I am still trying to figure that out. Maybe Kimbellgirl can elaborate on why this happens.

Stay strong!!!

Kayla's Mom:

What a relief for you and Kayla to have a doctor who is interested and willing to stay with you for the long haul. I hope things start improving very soon. (I am very impressed with Kayla's updates on her illness - she seems very mature for a 10 year old). Let her know that we will be thinking of her.

Pam

Good luck Kayla. Let us know how the appointment goes.

Okay, so my daughter went to a new cardiologist today who supposedly knows about POTS. She said that my daughter has hyperPOTS (normal blood pressure, high heart rate and high NE levels). She said that she has blood pooling in her feet. She said that any meds/herbs that my daughter takes should constrict the blood vessels rather than dialate them. She also suspects a mast cell disorder.

Before she prescribed any meds for my daughter, I explained to the Dr. that my daughter cannot take anything that causes depression/suicidal thoughts because of severe reactions she has had to other meds with these side effects. She sent my daughter home with a prescription for Singulair for the mast cell problem and said she would recommend for my daughter to take Clonidine as the next round of meds for POTS.

When I got home I looked up side effects for Singular and it has depression/suicidal thoughts as a potential side effect. Does anyone know of a H1 antagonist med that doesn't have this as a side effect?

Also, when I looked up Clonidine it said that it dialates the blood vessels. Does anyone know anything about this?

Pam

Anyone from California (San Francisco Bay Area) that has a doctor that diagnosed them with MCAS/MCAD? Some of the experts from this field that I have found on-line already want you to have the diagnosis before they will see you.

Rama:

Thanks for the info. I read the eucommia bark can lower your blood pressure. Since my daughter does not have high blood pressure, I will ask the doctor about it (I don't know if the doctor has any knowledge about herbal remedies but we'll ask)..

Blue:

Sorry to hear you are not feeling well. Funny how we don't let our first thought be that it might be from POTS. I guess that's just our way of coping with it.

Take care.

Pam

My daughter is unable to tolerate many meds also. She cannot tolerate beta blockers. The doctor then prescribed a calcium channel blocker which she also was unable to tolerate.

Hopefully, you will be able to find something that works for you!

Blue:

I too will let you know if my daughter gets any advice from her doctors on how to treat the anxiety. (Hers seems to be the same as yours, not anxious over the tachycardia but anxious over adverse situations that normally wouldn't send her into such a state). Sometime there is even no reason to be anxious but she says that she can feel it coming on (she said it feels like her brain starts to burn) and then the anxiety starts.

Pam

Not a dumb question. No, the candy isn't supposed to do anything. I have heard that it is the herb (licorice root). My daughter is going to ask the doctor about it next week.

Blue:

You have described it perfectly! My daughter has had POTS since July 2011 and the last month has been horrible as far as the POTS symptoms and the "panicked" feeling. Everyday seems to be filled with several episodes (and a lot of tears). We are all at our wits end and just trying to hold on until her doctor's appointment next week.

Let me know if you find anything that helps you.

Pam

Yes, it is one of the many annoying POTS symptoms.

Puppylove:

I bet you will have a great time. What a wonderful experience to talk to someone else that has POTS.

What a great sister you are! It is such a helpless feeling to watch someone suffer and not be able to do anything about it. Has your sister tried monitoring her heart rate while laying down and then again when standing? This might give her some indication if it is POTS.

Issie:

Glad to know that you felt emotionally better on licorice. Sorry you can't take it because your bp is too high. Sometimes it seems like we are all going around in circles trying to fix one problem, which sometimes creates other problems.

I hate POTS!!!

Pam

Arizona Girl:

My daughter also has hyper POTS. Just curious as to what treatment plan you are on that is helping with the muliple autoimmune issues.

Pam

Rama: I think you are exactly right! My daughter has an appointment next week with her doctor and I am going to ask the doctor about trying licorice. From what I read it might help (at this point it has to be better than doing nothing).

Relax86: Thanks for the encouraging words. Unfortunately, it seems to be a high NE problem which hasn't been able to be helped by just relaxation or deep breathing techniques.

One of my daughter's doctors told her that she should be taking in 10 grams of salt. This was impossible to do without salt tablets and the salt tablets make her stomach upset, which in turn causes her to not be able to drink the appropriate amount of liquid that the doctors want her to drink. The next specialist that my daughter said 10 grams was too much and that 3 to 4 grams would be appropriate.

I sometimes feel like the doctors really don't know much about this illness!!!

Michelle:

So sorry to hear what you are going through. The stress that you are having would be hard for a healthy person to deal with, let alone having POTS and trying to do all that you are doing.

Try and stay strong - there have to be better days ahead!!

kjmom:

Don't be surprised if the anxiety continues for a little while (I seem to remember that it took awhile for my daughter's anxiety to lessen once we stopped the Florinef).

kjmom:

Yes, my daughter was on Florinef for a month at .1 mg. When they bumped it up to .2 mg she suffered severe anxiety and depression (in fact the depression was so bad that we couldn't leave her alone). We didn't make the connection at first between the increase of the Florinef and the anxiety/depression until we took her to a psychologist who specializes specifically in pharamacology. He told her that this was caused by the drug and that she needed to contact her primary doctor to be weaned off of it. She did contact her primary doctor and he said that he had never heard of this reaction (although I have found this listed as a side effect on several websites). Her primary doctor wanted her to stay on the drug but she decided to go off of it because the side effects for her were just too scary.

I hope you get some answers soon.

Pam

Good luck!

RichGotsPots:

That's what I am looking for too. A med for my daughter that will lower her adreniline levels without affecting BP. Let me know if you find one (and I'll keep looking too).

Pam

Puppylove:

I know it is so hard at 15 to not be able to go out with friends. The good thing is that you are young and will hopefully outgrow this miserable thing called POTS. In the meantime, perhaps your sister and friends could come to your house once in awhile, instead of going out, and you could all do something fun (watch a movie, talk, play games).

So glad to hear others with this problem. My daughter is a music major in her last year of college (and then POTS hit). The only thing she has left to do to graduate is to put on a 1 hour vocal recital (standing the entire hour!!!) Her POTS is so bad right now that she had to cancel her recital this Spring and hopefully will be able to perform it sometime next year so that she can graduate.