lizzyp

My son was just diagnosed last month with POTS and I was diagnosed almost 2 years ago. My son's Dr. said that it is 90% of the time hereditary. I take a low dose beta-blocker and my son takes Florinef. My POTS is pretty controlled. I would guess that I function at about 75%. My son is still new to this, but we are told that his symptoms will definetly get better as he gets older and should be mostly back to normal by his early 20's. I noticed symptoms in my son for well over a year before he complained of feeling bad.

Hello Everyone,

I look on here for help and you guys are always here for me whether it is reading old posts to find answers or post new ones to get new answers. I wanted to tell you about a positive experience with a Pediatric Electrophysiologist in Houston. My son (13) started having symptoms around the beginning of January and I felt like I was 99% sure he had POTS by his symptoms. I have had it myself for almost 2 years now. I found Dr. Numan at Memorial Herman in the Houston Medical Center that was able to get him in less than a week from the day I called. Now, that was thru begging the very sweet nurse and telling her my son's symptoms. Dr. Numan is very familiar with POTS and treats many children and teens. During the first visit, they did an EKG and an Echo and we talked about the results. Then, he scheduled the Tilt Table Test for a few weeks away. My son had the TT Test this past Friday and we met with the Dr. right afterwards for the results. He started Florinef this past Saturday and we are crossing our fingers that it helps him. I know how hard it can be to find a good Dr. especially when it comes to our children.

I also live in Houston........I stumbled upon my Cardiologist when I first got sick with POTS. I was very sick and had no idea what was going on. Dr. Isaac along with an E.R. dr. at Willowbrook Methodist came to the conclusion that I probably had POTS. He is by no means a POTS Specialist, but he is definitly familiar with it. I see him at Willowbrook Methodist but he also works out of Methodist Hospital a few days a week. Im surprised that with a city as big as ours that there arent more Dr.s here that know about POTS. I am now in the process of trying to find a Dr. for my 13 year old son that appears to also have all of the POTS symptoms.....Good luck to you in your search for a DR.

I live in Houston and I see a Cardiologist for POTS. My son has started having quite a few of my same symptoms and I am in need of a Dr. for him that is at least familiar with POTS. The research I have done shows a Pediatric Cardiologist named Richard Friedman at Texas Childrens. I read that one parent liked him but I cant seem to find much else. I need to get my son in quickly to see a Dr. and thought I would start by asking the very helpful people on this board for advice..

Elizabeth

I purchased my most recent MIO brand heart rate watch from Costco for $40.00. The previous MIO that I bought came from Academy. Also, under $100.00. Both watches have been very good and dependable. No chest strap for either of these.

honestly, i do take a beta blocker...but the best thing for me feeling better has been Time! It has been very gradual, but looking back over the past 2 years, I have never gone back to the way I felt in the beginning. I have set backs here and there, but overall, time has made me feel better.

Ive been on the phone today talking to my friend who is a medical researcher in other fields about POTS. He has developed quite an interest in this area now that Ive gone downhill in the last six months. His field of expertise is indigenous health and diabetes II but he knows his stuff and is a pretty smart cookie.

He and I have been doing lots of research on the current medical opinions of the causes of POTS and we just wanted to see if these different opinions seems to pan out in terms of particular symptom profiles. To do this we thought we'd just ask you guys ten questions to get some anecdotle info or a Poll on some quick questions.

Dont be fooled into thinking that this in anyway some sort of proper medical test - as its just more an exercise in anecdotle information gathering. So I dont expect that anything gathered will provide us with anything concrete but it may just help my understanding of the condition a little.

Ill ask the questions now - if your a POTSIE like me please take the time to help out that would be great but I cant promise it will demonstrate anything useful.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Yes.........legs and upper arms

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Yes, mornings are the worst

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Dont Know

5. Have you ever been informed by a doctor that you have low blood volume?

Yes. When They Take Blood For Any Reason, It is Sooooo Slow Coming Out

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Hands and Feet are cold when I dont feel well

8. Did your POTS arrive suddenly?

Yes, Out Of The Blue

9. Is your skin pale?

No, I Am Half Japanese

10. Please the top 6 worst symptoms that you experience with POTS:

Blood Pooling

Chest Pain

Anxiety

Dizziness/Lightheadedness

Sleep Issues

Weight Gain

Thanks heaps for your contributions!!

I have had POTS for a year now. Last year my blood work was normal. This year my liver enzyme levels are elevated. I dont know if this is just me or if it could be a POTS related thing. Im going to a Gastroenterologist on April 15, but Im a little frieked out in the mean time.

Hi everyone,

I went to pick up my Rx refill of Toprol XL 25 mg, which I have been taking since my POTS began, and apparently there is a worldwide shortage of this drug. So my cardiologist called in atenolol 12.5 mg. I am wondering if anyone here has had their Rx replaced with atenolol and if so, did it seem to work the same? I am supposed to start taking it tomorrow.

Yes, my mail order pharmacy sent me a letter a couple of months back that there was a FDA recall on metoprolol ER and nobody could get it. So, I got an appt. with my cardiologist for this coming Monday to talk about changing meds. Yesterday in the mail I got a letter from my mail order pharmacy (express scripts) that said they are now carrying brand name Toprol XL and they have enough in stock for everyone who was taking metoprolol ER, but that I would need to go to my Dr. to get a new RX for brand name Toprol XL and they would fill it. I am very relieved because for a year I have taken metoprolol ER and it works for me. I wasnt looking forward to a new drug. Check with again with a few pharmacies and see about the brand name.

I have the Mio heart rate watch. You can buy it on the Mio website or if you have an Academy near you, you can buy one there. My watch is very accurate and I have had it almost a year now.

A friend who also has POTS takes Bystolic. She has been on it I am guessing around 9 months or longer. She said it works well for her. Her blood pressure stays down but it isnt too low. She has been very happy with it. She has also tried many other meds along the way and hasnt found anything that helps or works for her as well as this one does. I asked my Dr. about it for me personally and he at the time was worried about my blood pressure being too low if I were to take it. I take Metoprolol ER 25mg.

I have big time trouble sleeping at night. I stay up very late. I also feel my best at night and worst in the morning. I have to get up by 8:00 to take my son to school, but mornings are definetly tough.

I take my Metoprolol ER in the morning with lots of water and at night with lots of water. I take half of a .25mg of Xanax or benadryl to help me sleep, or I stay up most of the night.

Babette,

Thank you for the advice. My support system is wonderful and would be helpful to me in any way that they could if I didn't feel well. The cruise is a 5 day, which is the shortest offered out of Galveston. I agree that packing meds. in separate places sounds like a great idea. If we decide to go, I will let you know how it goes. Thanks again.

My family is considering going on a cruise in April. I have had POTS for 10 months now and I have slowly improved over time. I still have symptoms daily but I function pretty good. I know there are reasons not to fly, but do any of you know of any reasons not to go on a cruise? I would think its the most fun my family and I could have on a vacation without flying anywhere. I live in Houston, so we could drive to Galveston to board the ship. Does anyone out there have any experience or advice for me? Thanks to you all. I have only posted a time or two, but the information I have read over the past 10 have helped me tremendously. So, thank you!

Thank you. I looked up Peripheral Neuropathy and it sounds like exactly what is going on.

I have tingling and numbness from time to time in the top part of my right leg. It comes and goes. Sometimes when I stand still in one spot, it will feel warm and tingly. Other times I could be laying or sitting or driving and the top of my leg gets tingly. Other times, it will get tingly around the outside and numb in the middle of the tingling. Does anyone else have this feeling? I asked my PCP and he just said to try compression hose. I do that, but it still happens.

I take .25 as needed. It helps me sleep at night.

thank you all for the advice.....im trying to push the fluids, but its hard. Pulse is high, but I hope its a 24 hour thing so that I can start to get better. Worst case, I will go to ER for fluids. Thanks to everyone.

I am a new poster.

I have had POTS for 8 months. I have been feeling pretty good lately. This morning, I have the stomach flu. I havent been "sick" since Ive had POTS. Any advice?

I would appreciate any you could give me.

Thanks!