POTS - diagnosis and reliable information to show to doctor

[lauluce]

Hi, I recently had a tilt table test performed which I believe showed that I've got POTS. The results show that I had 90-95 bpm while laying down, but and as soon as they raised the bed my heart rate started to increase to a maximum of 156 bpm in a matter of minutes.

The pressure, on the other hand, remained constant and in normal range during the whole test. I must add that when the bed was raised I felt fatigued, dizzy and experienced shortness of breath, breathing very fast. Considering what I read about the subject, my results are indicative of POTS. What do you think?

The thing is, the two people performing the test, one of which I believe was a doctor, say that my results were normal, but my heart rate was extremely high... then they asked me if I have a series of symptoms, obviously trying to find out if I had anxiety or panic attacks, so clearly they didn't know of any health problem related to what the test showed...

My worry is that when I show this test results to my doctor, or another one, he'll be ignorant about POTS and conclude that nothing is wrong, missing the fact that I clearly suffer POTS as this document from the National Dysautonomia Research Foundation describes:
http://www.ndrf.org/NDRF Patient Handbook/SecA_pp59-134.PDF

I could easily explain him what POTS is and all that, but it´ll be of no use if I don´t have a text describing it from a reliable source, preferable a governmental one. Does anybody know where can I find such text? I´d really appreciate if anybody could help me, this POTS is really killing me on top of the rest of CFS symptoms

 

[SOC]

@lauluce
This article might help, but it's not from a governmental source. It does, however, describe variations and treatment options.

This paragraph in particular caught my eye.

Postural orthostatic tachycardia syndrome (POTS) is an autonomic disturbance1 characterised by the clinical symptoms of orthostatic intolerance, mainly light‐headedness, fatigue, sweating, tremor, anxiety, palpitation, exercise intolerance and near syncope on upright posture.2 These are relieved on lying down. Patients also have a heart rate >120 beats/min (bpm) on standing or increase their heart rate by 30 bpm from a resting heart rate after standing for 10 min. The symptoms lead to the limitation of activities impacting on a patient's life on a day‐to‐day basis—for example, bathing, housework, feeding. The severity of symptoms is more pronounced compared to a condition like pure autonomic failure. Patients with POTS may not have blood pressure changes and can have fluctuation of blood pressure in either direction. Other conditions like chronic debilitating disorders, prolonged bed rest or medication that impair autonomic function have to be excluded.

[my bolding]

 

[lauluce]

That article is great, SOC, specially that paragraph indeed, thank you!

Any other contributions from somebody else would be greatly appreciated

 

[lauluce]

That article is great, SOC, specially that paragraph indeed, thank you!

Any other contributions from somebody else would be greatly appreciated

No, that article is fantastic, SOC, very comprehensive... it's incredible how much can we help each other on the net, I wish eventually I could help somebody to

 

[ahimsa]

Here's a link to a review article about POTS from the Mayo Clinic:

http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/abstract

It says nothing about ME or CFS at all (it does mention the symptom "chronic fatigue"). But that could be a good thing. Some doctors are still so ignorant about ME/CFS that it can be a red flag -- their eyes glaze over and they stop listening.

On the other hand, if the doctor thinks that your POTS is due to deconditioning, and the way to fix it is with graded exercise, then this would be a big problem if you have PEM (post exertional malaise).

I have lots of links to articles but I'm not sure which would be most helpful for your situation. A few more:

Medscape article:

http://emedicine.medscape.com/article/902155-overview#showall
(this is a huge article but you can navigate to different sections via tabs on the left)

Resources listed on Phoenix Rising:

http://phoenixrising.me/treating-cf...ing/orthostatic-intolerance-and-cfs-resources
(some of these links are old, not sure which still work--the links to cfids.org are all broken)

If you want a PDF of the Hopkins handout on Orthostatic Intolerance just let me know. I'm sure it's still out there on the web somewhere but it's easier to just mail you my copy than to find the link now that the old cfids.org web site is gone. For some reason the new solvecfs.org web site does not have it (or I could not find it).

I hope one of these helps.

 

[Hell...Hath...No...Fury..]

@lauluce
I hope you manage to navigate the POTS mine field, it would be interesting to hear how you get on. I have a different problem in that my GP 'seems to get it' after explaining it to her and the results of my home testing.

But she booked me an appointment at a local hospital specifically for tilt table testing and after reading the confirmation letter, i've noticed i'll be going nowhere near a tilt table during the appointment! All they're gonna do is an active stand test (lying for 10 and only standing for 2)

I'm praying i don't have a completely wasted trip The people doing the 'test' don't know anything about POTS, i was just hoping to do the tilt table and get the results on record, even if they think its normal, it would still be a copy of the results.

Let us know how you get on

 

[taniaaust1]

@lauluce
I hope you manage to navigate the POTS mine field, it would be interesting to hear how you get on. I have a different problem in that my GP 'seems to get it' after explaining it to her and the results of my home testing.

But she booked me an appointment at a local hospital specifically for tilt table testing and after reading the confirmation letter, i've noticed i'll be going nowhere near a tilt table during the appointment! All they're gonna do is an active stand test (lying for 10 and only standing for 2)

I'm praying i don't have a completely wasted trip The people doing the 'test' don't know anything about POTS, i was just hoping to do the tilt table and get the results on record, even if they think its normal, it would still be a copy of the results.

Let us know how you get on

Yeah those certainly do not know about POTS and obviously may just be specialists orthostatic hypotension instead. You'd best take in some reliable info on POTS eg something from the John Hopkins hospital or another reliable source they wont be able to dismiss with you.

That happened to me last week when I was in hospital, usually I take info with me but cause it was an ambulance call out for me I didnt have my back up info with me and they did a laying standing test but stood me for less then 30 seconds (and while my heart rate was still rapidly going up) pronounced me as fine. (the did the BP reading immediately on my standing and that was it).

That naive doctor is going to leave me screwed as Im currently fighting for more home support due to all this and now it is in my hospital records that I didnt test positive to orthostatic issues eg POTS and OH (both of what I do have and more). Im going to now have to do a letter to hospital requesting it to go into my medical file with info on how we should be tested to show what dr did was completely wrong.

 

[taniaaust1]

I just tried to find the POTS info which was previously at the Johns Hopkins hopsital website using the links I used to use but they no longer lead to the info. So I tried to seach the site for the info but it seems there is no longer info on POTS there (pity as they used to have great info there on testing for it etc). They dont have it under "orthostatic intolerance" either.. they used to have POTS in the Arrhythmia section.. its gone. Even in the tilt table part ..its gone http://www.hopkinsmedicine.org/heal...ardiovascular/tilt_table_procedure_92,P07985/

Doesnt anyone know what is up with this? This seems to be pointing strongly to John Hopkins putting a blanket over POTS? Even an article on a child with POTS which used to be at that site is now gone when I went to the link.. all these things were there about a year ago.

Dr Peter Rowe still has it mentioned in his specialities there if one looks him up
..................

 

[taniaaust1]

Ive finally found the article about a child being treated for POTS at John Hopkins, on the John Hopkins hospital site .. maybe this will help show that this isnt some weird illness but a completely medically accepted one (thou unfortunately they dont define it in this article but just say in the article that its increased heart rate). http://www.hopkinschildrens.org/POTS-Diagnosis-Helps-Unravel-Mystery-Illnesses.aspx

 

[Hell...Hath...No...Fury..]

Its very strange how they deal with POTS results (or ignore them) i have a ton of info to take, home test results with symptoms as they appear at each time interval and videos showing my heart rate at varying times when i'm clearly not moving or doing anything. (One sitting in a chair where it climbs from 74 to 254)

Its very confusing that they aren't doing the proper test, because Julia Newton works in that hospital and she's expert on POTS. She agreed to see me with a referral from my doc but i'm guessing i wont be seeing her until long after the crappy active stand test.

My own doc suggested postponing the active stand appointment until i see Julia first... But... Julia emailed me and said to go ahead and do the tilt table first... Only they aren't doing it!!

The only other explanation is the active stand is a preliminary that they give everyone first, on first appointment like a routine ECG and then maybe get tilt next time...but if my results appear okay from their crappy pre-lim i may not even get back there grrrrrrrr

 

[ahimsa]

It seems wrong to "like" all these sad and frustrating stories posted here, so let me just say this: It's a tragedy that doctors are still so ignorant about POTS, NMH and all the various names/types of orthostatic intolerance.

My heart goes out to all of you. Sending hugs!

 

[Sushi]

Here is a story that we can "like." I had a colonoscopy yesterday and was worried that they wouldn't take dysautonomia seriously--but they did!

I had a copy of my TTT report with me but they just believed me! The gastro said he likes having "unusual" patients. I had told him that I once had a pulse pressure of 8 and he wanted to know all about it. Other docs hadn't believed that was possible.

So they gave me 2 liters of warm saline, hooked up an EKG and gave me oxygen throughout. So, I had no problems with the dreaded procedure.

Sushi

 

[lauluce]

you know, when I described my symptoms in an appointment with not one but two cardiologists at the same time, they sent me to do a holter and one literally said to the other "a tilt test should not be necessary".

They just made me sit me for a minute while measuring blood pressure, made me stand for 2 minutes and measured again, and concluded everything was normal. can you believe that? they actually said the tilt table test was useless!

Despite this, contrary to their belief IT WAS useful, as when I did it, thanks to another doctor who read info about CFS that I took him, the results where, as I said on my first entry, quite abnormal.

Try to not waste your precious time Hell...Hath...No...Fury.., and find a place where you can get the real test, a test like the one you describe will most likely show nothing. If I could find where to take this test in Argentina, I'm sure you can find it where you live

 

[lauluce]

It seems wrong to "like" all these sad and frustrating stories posted here, so let me just say this: It's a tragedy that doctors are still so ignorant about POTS, NMH and all the various names/types of orthostatic intolerance.

My heart goes out to all of you. Sending hugs!

Thank you for your kind support. I was reading the material all you gave me, I think I have good chances that my doctor does some research on POTS and arrives at that diagnosis based on my results. Still, any further documents you can provide would be VERY useful

 

[Hell...Hath...No...Fury..]

Try to not waste your precious time Hell...Hath...No...Fury.., and find a place where you can get the real test, a test like the one you describe will most likely show nothing. If I could find where to take this test in Argentina, I'm sure you can find it where you live

There isn't any. There are two places with tilt tables (or supposed to have them) The only reason i'm going to this hospital is because that's where Dr. Newton is and she's a top researcher in this area.

I need to email Dr. Newton to explain the situation but don't want to bother her again, i was lucky that she agreed to see me at all, if she thinks i'm a pest she might retract her offer. But i think i'd rather take a chance and bother her than go to hospital for nothing. I can't bear any more 'wasting my time appointments' with people who know nothing.

I've been doing the test this week to see how much the pulse climbs in only 2 mins and its just not enough time to climb 'enough' even 5 minutes would have been more helpful to show a decent climb

 

[Hell...Hath...No...Fury..]

I just emailed Dr. Newton and she replied immediately! I explained everything and she says its well worth attending the appointment and wanted to know what day i'm there. So i guess i'm going lol.

 

[lauluce]

I just emailed Dr. Newton and she replied immediately! I explained everything and she says its well worth attending the appointment and wanted to know what day i'm there. So i guess i'm going lol.

well that's great news! please keep us updated

 

[lauluce]

I read most of every text you gave me, thank you everybody

 

[ahimsa]

For @lauluce, and anyone else who can't find this document on the web (used to be on the old cfids.org web site), I've attached a PDF to this message. It's the document from Johns Hopkins with patient information on Orthostatic Intolerance.

Several versions of this have been floating around, in paper and on the internet, for years. I think the first version that I read was 1995 or 1996. The version that I have attached is dated 2010.

There's also a video (webinar) of Dr. Rowe presenting information on this topic called
Managing Orthostatic Intolerance. <-- link goes to youtube.com

 

[lauluce]

For @lauluce, and anyone else who can't find this document on the web (used to be on the old cfids.org web site), I've attached a PDF to this message. It's the document from Johns Hopkins with patient information on Orthostatic Intolerance.

Several versions of this have been floating around, in paper and on the internet, for years. I think the first version that I read was 1995 or 1996. The version that I have attached is dated 2010.

There's also a video (webinar) of Dr. Rowe presenting information on this topic called
Managing Orthostatic Intolerance.

Thank you very much!!