was diagnosed today

[halmad85]

Well, I had the TTT done by the doctor who I thought didn't know anything about POTS. But, he actually came through for me.

During the TTT, my starting rate at rest was I think 66. Then they raised the table and within a minute it shot up to 144, and I felt soooo sick. The part I was a little unsure about was that it didn't stay high throughout the test. It went back down to the 80's, then fluctuated between 80-110. Then they put in the IV med, and when I went back up...same thing...pulse 150-160 and all the symptoms. Then it stayed around 130-140 for something like 10 minutes, and went back down. I kinda thought it was supposed to stay up. I don't know? My BP didn't show any significant changes.

So, I asked him what he thought from the test, and he said I have an obvious orthostatic intolerance. I said, well, is it the "POTS" that I thought it was? He said he never hears it referred to as POTS, but I definitely do have postural orthostatic tachycardia. I said, well, "that's POTS". So, I got my dx without having to see a non participating provider with my insurance.

He's starting me on Inderal 10mg (I think) BID - TID. He gave me the prn for Xanax, and wants me to continue the Florinef. I'll see him again in about a week to discuss how the meds are working. He said if I don't see improvement he'll refer me to the EP specialist in the hospital to take over my care. Well, it's been a long day so far but I'm so glad that this doctor got to see that I really do have a problem and I'm not just anxious.

Thanks for all the support along the way. Hope everyone is doing well today.

Thanks,

Jen

[Ernie]

Hi,

Thanks for the update.

I am really glad that your doctor was able to diagnose you. I was concerned about you having a misdiagnosis but you came through well. Congradulaiton.

[MNsue]

Jen,

I was just diagnosed with POTS last week Wednesday after a TTT. I also did not have problems with my blood pressure, but did have tachy up to 160 without any meds. I am also trying to figure out the best way to treat my POTS so thank you for the update on the meds prescribed.

I was given a very low doese of Topral a Beta Blocker, however It dropped my BP and pulse very low and needed to stop. My MD has yet to return my call (3 days later) so I guess I need to find someone who is a little more responsive, and has more treatment options.

Best of Luck.

Rhonda

[halmad85]

Thanks Ernie. I appreciate that.

P.S. Is this disease progressive? I know some of you mentioned that you started out the way that I am right now, until your symptoms progressed. Does that mean it could progress without treatment...will progress...could progress even with treatment? What can I expect for my future?

Thanks,

Jen

Hi Rhonda!

I also tried Toprol XL and had the same reaction. I think my symptoms became even worse with the low pulse. I hope you get some relief very soon. Thanks for the reply.

Thanks,

Jen

[Evie]

Its great to hear you got a diagnosis! I hope the meds help you. Good luck

[AJVDK]

I am happy for you that you found a doctor that knows about POTS, and that you finally got the dx.

Amy

[halmad85]

Thanks Evie and Amy!

[Sophia3]

Jen

I am glad you got things confirmed and your doctor came through for you.

That is always a good thing.

good luck and rest up after the big day you had.

[briarrose]

Jen

It's tough to answer your question because looking back at the past 10 years before the tachycardia I had problems with joint pain and fatigue.

After getting a flu shot at the end of October 2001 I started having flu like symptoms which continued for 3 weeks before ending up in the hospital with severe tachycardia. They waited a month to start me on beta blockers because they thought it would just pass. It was several months later that I started to have an increase in different symptoms.

After 4 years I continue to have new symptoms some very severe BUT I found a good autonomic doctor who has me on great medications to help control my symptoms.

It's different for everyone so there is no magical answer to your question, I'm sorry.

Take care & just be grateful that you have a diagnosis and your not being told that your some psych nut.

Steph

[janineerrn]

Hi Jen,

I am glad for you that you have gotten an accurate diagnosis. There is no answer to your prognosis question. Some people recover, some people function well with meds, some people get worse. i guess it just has to do with what the underlying cause of the POTS is. Some people never know what the underlying cause is.

I hope you find out what works for you to control your symptoms.

Janine

[halmad85]

Thanks ladies. I am very grateful that I was properly diagnosed. I really was lucky to have heard about POTS and got to be able to push my doctors to try to find out if that's what I have. I can't even imagine how long I would have waited if I didn't know what it was either. I was so happy with how good this doctor was with me today. He really made me feel like he thought it was all in my head, at first. But, it turned out well.

Thanks for responding to my question. I guess I can just hope to respond well to the meds. We'll see what happens. I am so lucky to have found this site so I can offer treatment ideas to my doctors as well.

Thanks for the replies. Did anyone else have the same type of reaction to the tilt, or did everyone find that their pulse stayed high the whole time? Just curious. Thanks alot again.

Jen

[cmtaylor5]

Hi,

Glad you got the proper diagnosis. I didn't have the tilt, just the poor man's tilt, but my heart rate did (and does) just what yours did. It spikes upon standing, takes a while, then comes down almost to normal, then goes up and sort of fluctuates. The same thing happens when I stand still (like when standing in a line) for a long time.

I'm optimistic that you will respond well to meds. I did, and since I was dx properly, live life like before POTS with a few limitations. Good Luck!

Carolyn

[halmad85]

Thanks Carolyn! It's so good to hear that you responded well to your meds. That brings me some hope. I hope you continue to do well. Thanks for your reply.

[Lulu]

Hi, Jen,

I'm glad you got an accurate dx, too! now the healing can begin. i responded very well to meds initially and then had them changed, responded well to those for the past couple years. i've been basically able to pass for a "normal" person, except when i'm passing out lol

although this is kind of a bummer, i felt like i needed to tell you that you can recover almost completely (i have, but ive never been 100%, but i am good enough to do a LOT of things and handle a packed, but paced, schedule. ) but then bottom out again: i've also recently had a progression of unknown origin after being well-maintained for a year or more and it's scaring the heck out of me.

i have multiple ups and downs with this illness. some months i'm dead-on and some months i just want to die.it will vary from person to person, as has been mentioned. so yes, you can get all the way better and then have 1 step forward and a half or 2 steps back. if you have a good doc and know your body, in the long run, you will get along fine, even if your life is never the same.

i wish you all the best care, and strength and courage.

love and light

Lulu

[JaneEyre9]

Jen,

Glad to hear you kept your TTT and got a diagnosis. Your symptoms sounded right on for POTS. Hope that the meds give you the help you need. You did a good job getting informed and advocating for yourself

Kristen