derekliz

I would be interested in reading those as well. I guess anyone can have a heart attack at anytime. There are no tests that can guarantee that a person will not have a heart attack

Liz

Was this testing done by a psychologist? I would love to have this done. What kinds of questions did you ask to find the correct specialist?

Liz

I live in states, Atlanta area to be specific. They fax a script over to a pharmacy in Canada for the Ivabradine. He has several patients on the medication.

He did the TTT, Echo and EKG. Also norepinephrine 10 min into the TTT. As far as looking into it further, I have 5 years of all kinds of testing that was done and they could not determine from those tests the cause. Many people unfortunately do not know their cause. He did indicate that it could have been from a virus or illness. Prior to my POTS symptoms, I was having strep throat and sinus infections for months. I also had a Positive EBV DNA test.

At first, I was determined to find the cause but I dont know what other testing can be done. I feel like I have had most of the tests already. I had all the tests to r/o pheochromocytoma,MRI's, CT scans all kinda of cardiac tests....all normal. It was beginning to make me alittle crazy so I have just come to terms with it all. He did offer to refer me to Vanderbilt but he did not really feel I would get any answers. My POTS is stage 1....no presyncope or syncope, basically just tachy upon standing, fatigue and some BP spikes. I am going to look into MCAD a little further when I see the hematologist/oncologist next month.

Liz

While I am glad that POTS is receiving some awareness, there are many of us who are not wheelchair bound, do not pass out and are still able to function (for the most part) on a daily basis.

It is unfortunate that they made it seem like all POTS patients are the same as her. That may make it harder for us when we talk to physicians or anyone else, for that matter, to truly understand our symptoms. We are all so different with our symptoms and treatments and I personally would have been happy if they also listed maybe the top symptoms of POTS

Liz

They did do a standing norepinephrine test...if I remember correctly, 10 min into the TTT. They did not do a blood volume test. Send me a pm if you want their contact info. I will be happy to send it

Liz

I too live in the Atlanta area and went to Birmingham first. While I was happy with them, 2 things disappointed me after coming home and doing more research. They did a 10min TTT and I was on a beta blocker. They never told me to stop any kind of medications or supplements that affect heart rate or blood pressure so I do not feel my results werr accurate. Also, for me, when I asked if they would look into possible causes of my POTS, they told me they would not do that.

I see an autonomic disorder specialist in Auburn Alabama, which is the same distance for me. They redo all testing. I had a 45 min TTT, echo and ekg. His name is Dr. William Ross Davis and if you want, I can send you their contact info and his training. Dr. Davis put me on Ivabradine (which is not available in the U.S.) I never have a problem getting in touch with his nurse and she is amazing. You can email her or talk to her prior to even setting up an appointment to see if they fit your needs. They will mail a packet for you to complete and once you return it, they will schedule an appointment.

I hope that you find someone who can help you. It can be a long process but once you do, it makes a huge difference to have a physician who does not write off your symptoms. Good Luck!

Liz

I am on Ivabradine but have never had presyncope or syncope so I can not say for sure. A friend is also on Ivabradine and I will have to ask her

Liz

Chaos....yes that helped....thanks for explaining

The first line confused me....pots is characterized with an elevation in hr without hypotension?? There are so manu on this board that have hypotension upon standing. I, fortunately do not but believe i am Hyperpots.

I have not followed up on the study.....completely forgot. Will have to put it on my radar and I hope that the results were positive

liz

I have been on Ivabradine for almost 1 year and live in the U.S. I would agree with Rama ....it definately has kept my tachycardia under control I do have issues with BP spikes and it does not help with that at all but being on a beta blocker was not working for me....made me worse. Since my bp is normal most of the time, I chose not to be on meds for that. I treat it naturally and am in the process of meeting with a physician next week to see if I can be tested for MCAD. My MD in Auburn Alabama prescribes it for me. I do order it from Canada without any problem. He faxes the script over and they ship it....takes about 2 weeks to receive it

liz

Does anyone here have any knowledge about testing and results for growth hormone deficiency testing? I had the tests and had the results but wanted to know of it is ok to post them here for opinions.

Thanks

Liz

I take Magnesium daily so it would be hard to determine if it has warded off the headaches.You might want to get Magnesium Citrate...it is much easier on the stomach. You can get that kind at a vitamin/supplement store. I have been using the brand NOW. Good Luck!

liz

I bet all of our kids will end up in medical school and find a cure

liz

awe......so sweet

What I have done in the past and it has worked, is have all of your records mailed over to your primary care physician. 9/10 times, the pcp will give you the records that were sent over after they have scanned them into their system. It will be very costly for you of you have to pay per page. Good Luck!

liz

Found this information on the Dysautonomia Internation Facebook Page

I believe that the arm should be level with the heart....has me thinking now. When my TTT was done and my BP was checked consistently over 45 min, my arm was cuffed and by my side strapped in the entire time! Wonder how true my #'s are then??

Liz

Initially my fatigue improved but the last few months it has increased again. Trying to determine if it is the Klonipin that is causing the fatigue. Some days are better than others. I take 5 mg of Ivabradine in the morning and my standing HR is anywhere from 65-75 and I take 2.5 mg at bedtime. I order it from a pharmacy in Canada. My specialist faxes over the script for me. Beta Blockers just wiped me out completely.

liz

I am on Ivabradine and have been for almost a year (I live in the US). It definately has lowered my HR. Cannot wait to see the results of this study when it is released

http://clinicaltrials.gov/ct2/show/NCT01761825?term=ivabradine&rank=8

And to think you had to pay him for such a useless office visit!! That stinks!

Liz

So could this possibly help wih elevated BP?

Liz

I see Dr. William Ross Davis in Auburn Alabama, since ATL. has no one that is knowledgeable. It takes about 2 hours to get to his office. His nurse is amazing. I can send you her email if you would like to ask her any questions. They will have you go off all meds that affect heartrate and do all of the testing for you. They like to see their own results rather than have you bring your TTT results etc. They placed me on Ivabradine which is not yet available in the US and it is amazing for HR.

He specializes in Autonomic Dysfunction. I did go to the MVP center in Birmingham and was initially diagnosed there, but I LOVE Dr. Davis and his nurse is incredible!

Liz

I was prescribed Klonopin by my first pots specialist as a sleep aid. I spoke with the nurse with my current POTS specialst and she gave me the taper down dose and said I can take a small amount as needed.

liz

Thanks for responding Angela. I am waiting to hear back on the plan for weaning from my nurse. I only took 2.5 last nite and the same tonite. Not sure when/if I will feel any difference.

What do adrenaline surges feel like? Does your BP or HR shoot up when you have them? I do not have problems with low bp but at times my BP will go up. I take Ivabradine for my HR and it works really well

Liz