What Now?

[green85]

I really am at a loss. I have every classic symptom, but my tilt table test didn't support a POTS diagnosis. However, I am pretty sure the test wasn't performed correctly. I have been to several doctors that what to tell me that this normal for me. It's not. I have been me for 29 years and I know what my normal is. I have been symptomatic since my daughter was born in 2013. The cardiologist I saw was the "POTS" doctor in my area. I feel like every doctor's visit now leaves me feeling defeated and unheard. I really don't know what to do now.

[Bigskyfam]

My first TTT had many inconsistancies. New nurse/ tech and my doc had never ran one before. She presented my case to the Electrophysiologist and they repeated the TTT at no charge. The tech and doc both familiar with POTS. I grabbed a copy of my TTT and compared the info with the research.

I know how you are feeling. I was disappointed in a sense after the first TTT.

How do you feel it wasn't performed correctly

[gjensen]

Can you get the results of your test? Not just the summarized report? Maybe you can share the results and share with someone on here.

I understand the frustration with being dismissed. Unfortunately some things are difficult to identify.

My first TTT was interpreted as negative though it was very positive. They know better now.

Keep you head up. You will get answers.

[green85]

I could really move a lot and did. I was actually kind of walking in place and no one said anything, so I just kept doing it because it helps with the dizziness. I am looking at my feet right now and I can see the blood pooled in them. My primary care was completely uninterested in that today. I am so tired, the idea of trying to find another doctor, waiting again for an appointment while I can't even really take care of my daughter and miss so much work is becoming an overwhelming thought. I don't even know that I have POTS, but I can't get any doctor I have seen to take an interest in finding out what is wrong with me.

[green85]

I can call tomorrow to get a copy of the results. I watched my heart go from 49 to 90 on the monitor. My blood pressure laying flat was 89/60. That's all I remember.

[Raisin]

As far as I know, the increase of heart rate when going from supine to standing of more than 30 points indicates a Pots diagnosis. So, going from 49 to 90 would be a positive TTT? Anybody else have input on this? Obviously, I am not a doc and certainly can't say anything for sure. I also know that I was told to remain very still and only speak when I am to report a symptom or problem. I feel for you as I have often felt like I am misunderstood. It can be extremely frustrating. Please hang in there. When I started my journey, I was looking for a Sherlock Holmes doctor. It turned out, I had to be my own Sherlock and find the right doctors that would listen and believe in me. It can be done and you will do it too. Even after a positive TTT a and a wonky EKG, my primary doc at the time became dismissive and told everyone I was just deconditioned. Had to fire her. It is a journey. Don't give up. Breathe and get your results and you can find great resources and support here. You are worth it. God Bless.

[green85]

Thank you guys for responding. It really means a lot. Raisin, I thought the test would be positive too for that same thing. I was never asked to be still. The nurse was so nice, she chatted with me the entire time and never said anything. Yeah, I guess I have been looking for a Dr. House, but I have only found doctor's with really big egos. I have never really been sick so I have never had an experience like this.

[Raisin]

Yes, Green85, this has been a new road for many of us to navigate. It does have its challenges to be sure! And, for many docs, this is also a new road! (Unfortunately, some docs don't realize this road exists...snicker snicker snort snort) I hope you get your results so you can take a looksie at them with your own eyes.

Interestingly, there was a Dr. House episode where a guy kept passing out, blood pressure problems, etc. and it turned out is was basically POTS caused by a chiari malformation.

Prayers sent your way for hope and healing.

[SarahA33]

Hi Green,

I'm sorry to hear that you've been feeling so poorly. It's not easy to feel like this every day and feel like you have to battle with your doctors who are supposed to be helping you during a time like this. Unfortunately, like the other members have shared with you about some of their struggles also, this is a situation that a lot of us have faced. I wish you continued strength down your journey and I'm glad that you have found us, as now at least I hope you'll feel that you aren't alone and that you are amongst new friends

I know you mentioned in your initial post that you had the "pots doc" in your town, however, on DINET'S main website there is a section titled "Physician List" where you can use the locator to find a specialist closest to you, or I know some members have posted Topics in the past with their locations asking other members for suggestions with physician's they have seen or have seen in research papers, etc.

I agree with what some of the other members think, a repeat TTT sounds appropriate, if that isn't available is it possible to have the test repeated at another facility? I'm not a doctor, but a second opinion sounds warranted.

Welcome to DINET! Btw, I LOVED Rainbow Bright - When I was 6 I wore the costume every chance I could for 6 months - Sarah

[pooter18]

it's a long hard road unfortunately to find the right doctor..even the cardiologist i have now does his best to control the symptoms but he is not a POTS expert..when i had the TTT done my heart was racing at 146 so they did not inject the medicene they were suppose to.. and i was not suppose to take my heart meds before the test.. but do the heart rate they had me take half a dose so to say the least mine was not done right either.. but they did conclude i had POTS /sinus tachycardia/autonomic nervous system dysfunction based on symptoms and all the other test they did at MAYO..i started having symptoms when i was 27 i am 50 now and just now have found the right team of doctors ..they are not experts and we learn along the way but they do everything they can think of to keep me stable and out of the hospital..so i am blessed for that..i do wish i had a expert though to tell me what is to come or what could possibly happen worse case..or what they have seen in other patients with POTS..but i have done this day by day for over 20 years and they let me adjust my meds as needed since every day is not the same..i think the biggest lesson i have learned in starting new meds is they to start at a childs dose and titrate up..don't know about the rest of you but i am sensitive to meds and have to start small and find a doseage that works well for me..i learned that the hard way and ended up in the hospital twice before i got smart..everyone is different and the same things that work for me might not work for you..best thing is learn your body pay attention to how your feeling somedays mine changes by the hour and learn to adjust your lifestyle..some of you have to work and i feel for you not able to lay down when needed or put your feet up or even do the simple things that would make you feel a little better when you feel bad...i feel your pain and frustration..best of luck best wishes

i could go on and on but my brain fog is getting the best of me so better go

[Kkb1216]

Now you keep pushing. You are worth it.

Keep in mind not all doctors, nurses and techs are very familiar with the variety of symptoms dysautonomia can manifest. For instance, I started pouring sweat in the minutes before my blood pressure plummeted during the TTT. I was not nauseous or dizzy yet. I was just cooking in a volcano. The nurse was very alarmed and got another nurse to come in who explained quietly everything was working as it should. Nurse one had never seen it before. She just didn't know.

My own neurologist, who I have used for 5 years for migraines, said he had no idea how to treat me. He just doesn't have any patients with it.

I say all that in hopes of starving your frustration. If you can, approach a different team of doctors and move forward. Keep calling, bothering, demanding. Be relentless.

You are your own best advocate.

Feel free to fire a doctor. I had a doctor tell me I was just stressed out. I gathered my things and left. Another cardiologist had difficulty returning phone calls in a timely manner... Like in the same week. I fired her as well and moved on.

Be open. I thought I had a heart problem for 6 months. I figured I passed out because of the high amount of drugs I was on. Thankfully, my neurologist said enough, and sent me for a TTT. I expected nothing to come of it. Turns out we found an answer that had eluded 16 doctors over a year.

And cry if you need to. Honor what you feel, then put it back in the box. Follow up by doing something with forward intention. Call a doctor, organize your medical paperwork, look for a support group. Just move!

Hoping you find your way! I've found people super helpful on here

-K