Pots Diagnosis Now Unclear

[TCP]

I have ME, EDS and Neuropathic pain. I have been experiencing autonomic issues for some time such as dizziness, problems being upright, sweating, fainting, nausea etc and I know my HR rises the longer I am upright. If I move around my BP and Heart go nuts and my breathing is affected.

I have recently been diagnosed with EDS. On seeing the cardiologist she noted my symptoms and sent me for a Tilt Table Test two weeks later. I had quite a rough time during the test with profound nausea, dizziness and worsening nerve pain in my legs and heaviness. The physiologist/technician and the doctor in attendance said I had POTS and the doctor said it was linked to EDS and the glandular fever I had back in 1984 which brought on the ME and autonomic issues. I was also told I had Neuro-Cardiogenic Syncope. The results had shown these things.

Later a letter was sent to my GP from another doctor via his secretary 'Authorised by secretary not verified by doctor', which I thought a bit strange and this letter states that I do NOT have POTS. No mention on NCS or anything else. I am now confused. My HR did definitely rise and which is stated in articles if it goes about 120 bpm, which mine did, then that should be an indicator of POTS.

So POTS totally dismissed by this secretary/doctor and yet I was told that I have it and NCS and now I am back to square one. I am so upset as I was hoping to be started on Ivabradine as I feel absolutely awful. I am able to do very little because of the heart, BP and breathing issues, plus the dizziness, weakness and nausea. I am even doing recumbent cycling and Tilt Training to help, taking lots of water and salt and still feel awful.

I think I will have to pay privately to go to London and get the two-day full autonomic testing done as my experience locally has not been very good.

[Praxxtor]

I had my autonomic testing in London at UCLH, which I believe you are referring to. Well if a technician and a doctor both confirmed you have POTS perhaps it's a better idea to call the clinic and ask what is going on instead of getting it done again? When I had my TTT done, the technician kept very quiet about what my bp/heart readings suggested and told me to wait until I received the results from my doctor. It might just be administrative error perhaps? At UCLH you just have a technician in the room, well in my case and then you receive a letter in the post regarding your results.

[TCP]

Thanks for your reply. I think if I don't get anywhere with the GP or hospital then I may have to go privately to prove that I do have something going on with my ANS. The people who did mine spoke during the test but afterwards the doctor said I had POTS and gave me a Tilt Training instruction leaflet and the technician wrote at the top that I also had NCS.

I think I am angry that I was informed that I had POTS and NCS and then seeing this letter really threw me. I've only had the TTT done and nothing else at all. I think that's all they would offer at that hospital. I was shocked because it was cut and dried or so I thought. My body reaction to what was going on showed that something was not right and then the person who wrote the letter mentioned the physical problems I had as well as my BP and HR changes, but then simply stated no POTS and that was it. I want to to get this checked out because my lifestyle is really being restricted with the symptoms I am suffering from.

I think it bears some investigation. How did you get on in London? Did you get the full autonomic testing done over two days? I would like to have that done.

Many thanks!

[Katybug]

I had the doctor who supervised my ttt write a report to my cardiologist that I didn't have anything. But the nurses who administered the test told me my HR shot up to 145 at the 3 minute mark and stayed there for the whole test and I was extremely symptomatic for the whole test. They kept calling the doctor into the room because they were very concerned about my HR. I looked up ttt and tachycardia and found out about POTS prior to my follow up appointment with my cardiologist. I was floored when she told me what the report said. I told her what happened during the 45 minute ttt and asked her to obtain the raw data and interpret it herself. She obliged. We met again a week later and she confirmed my POTS diagnosis. She was also concerned that the report from the other doc and my raw data didn't match. Regardless, I am so glad I stood up for myself and asked her to review the data herself.

Please consider obtaining the raw Data and seeking a second opinion or at least having a conversation about this with the tech/doctor that was in attendance and spoke to you. They may correct the report.

[Nymph]

It does sound like an administrative error to me. I would call and ask for different people up the line until you can get this cleared up.

[Praxxtor]

Thanks for your reply. I think if I don't get anywhere with the GP or hospital then I may have to go privately to prove that I do have something going on with my ANS. The people who did mine spoke during the test but afterwards the doctor said I had POTS and gave me a Tilt Training instruction leaflet and the technician wrote at the top that I also had NCS.

I think I am angry that I was informed that I had POTS and NCS and then seeing this letter really threw me. I've only had the TTT done and nothing else at all. I think that's all they would offer at that hospital. I was shocked because it was cut and dried or so I thought. My body reaction to what was going on showed that something was not right and then the person who wrote the letter mentioned the physical problems I had as well as my BP and HR changes, but then simply stated no POTS and that was it. I want to to get this checked out because my lifestyle is really being restricted with the symptoms I am suffering from.

I think it bears some investigation. How did you get on in London? Did you get the full autonomic testing done over two days? I would like to have that done.

Many thanks!

The staff in the hospital were very friendly and the doctors seem to give you plenty of time to voice your case. My 2nd day of testing was just to return the ECG monitor that I had been given. Then again I wasn't booked in for ALL testing...one I am certain I missed was the exercise test. All my testing was done on the same day. All I'll say is find out what happened in regards to your results and if they insist that everything is normal then just head over to UCLH. Good luck and let us know how it goes!

[nomdeguerre0850]

This is going to sound off the wall, but twice I have had another patient's results mailed or faxed to me. I've learned to always check the name on the test to be sure the results are actually mine.

I also had a physician tell me I did have a dysautonomia, but not POTS. My understanding is that, depending on the doc, some are reluctant to say it is POTS until all other possibilities are ruled out, and they have nothing else to explain your symptoms.

If you passed out during the TTT, that IS syncope. If you got lightheaded, tacky, clammy, etc, but didn't actually pass out, they will usually say you have presyncope.

[TCP]

Yes, it's sounds like some people either do not know enough about the condition or are loathe to make any diagnosis. I was definitely told POTS at the end of the test and NCS. I didn't fully pass out but my legs buckled and I was sweating, had nausea, dizziness and weakness. They haven't mentioned pre-syncope or NCS in the letter to the cardiologist I saw. I have now read on 23 websites, including the NHS one, that more than 120 bpm is POTS and mine went up to 130 bpm. I have recorded higher than that at home and if I had been moving around it would have been in the region of 150+ bpm. The thing I find astonishing is that notes have been made at the hospital about how debilitating this condition has become and now investigation has ground to a halt. No follow-up or anything else.

I have informed my cardiologist via their secretary that I am not happy with the report and she 'may' review it. If not I shall have to somehow get to see someone in London one who does know what they are doing and can link the EDS, ME, POTS and neuropathy.

[nomdeguerre0850]

TCP,

Good luck in your hunt. I certainly know how frustrating and exhausting it is to try to help doctors figure out what is going on. It's such a weird disease and presents in so many different ways.

I've gotten so discouraged I'm to a point I don't care what they call it anymore. Just help me treat the symptoms. They've got my headaches under control with botox injections. I've just ordered a wheelchair to help me save my energy, get around more easily, not have to squat down or sit on the floor if someone stops me to "chat," and be able to take an elevator that stops on more than one floor, etc, etc, etc. I'm hoping it will help me get out and about a bit more.

I hope you get some answers soon that will help to better guide your treatment options.

[TCP]

Thanks very much indeed.

I sent a full and honest letter to my cardiologist and she wants to see me again next month. She believes that because I already have constant tachycardia that it isn't POTS. She says I do not fulfill the criteria for POTS. I find this odd as I have all of the symptoms of POTS.

Does anyone else have tachycardia all of the time?

[Chaos]

I think there is some overlap between POTS and IST (Inappropriate Sinus Tachycardia). From what I've read and my cardio has said, they may fall along the same spectrum but with IST you tend to have faster HR most of the time compared to POTS. It's not so position driven like POTS is. Perhaps others can explain it better.

Hope you get some answers this time around.