Have Any Of The Diagnostic Criteria Changed For Dysautonomia?

[ajw4790]

Hi all!

Sorry that I have not been around a lot recently. I tend to check in, but not post much. Welcome to all the new people on the board!

SO... I recently spent OVER a week at one of the major dysautonomia treatment/research facilities. AND it left me with more questions then answers...

It seems that they have made up their own diagnostic criteria for POTS etc. It is similar to the criteria posted on DINET, but with there own 2 cents thrown in. Have things changed??? Who has the final say in these matters???

Should the fact that you are on meds mean that you no longer fit POTS criteria??? I had over a 30 bpm increase on the TTT, but just under 120 bpm. SO, they would not call it POTS. This was my 4th and 5th TTT and the three previous demonstrated POTS as a diagnosis without question. Just because my meds do work to keep my HR down should not mean that I no longer fit POTS criteria. They did not request that I be off of meds. My BP crashed during one to 50 something systolic to 30 something dystolic., but the drs. did not call it NCS, but a simple faint. I did not lose consciousness, but evidently I fainted...

So, according to them it demonstrated orthostatic intolerance due to deconditioning and part of a vicious cycle that starts with genetics. Two other dysautonomia specialist have agreed on the POTS diagnosis. Also, the recent drs. claim their tests did not show enough evidence to diagnose small fiber neuropathy, although the other drs. diagnosed it, and at least three tests were positive for SFN. AND it was what helped to explain much of my symptoms. Without it I do not make a whole lot of sense...

I just don't know.... more questions. NO answers. Way to much money and time wasted. URRRGGHHH!

What to do???

[potsgirl]

As I've written previously, I know Mayo Clinic (MN) has a different outlook on their definition of what constitutes POTS. I'm wondering if other people who have gone there got the same information. My neuro specialist in dysautonomia told me that I didn't have POTS because on the tilt table test my HR jumped 60-70 points, but my BP went from around 90/60 to 30/20 - they had disabled my pacemaker, which I have for my bradycardia. In their definition, the BP should stay close to the original reading, and not drop more than 15 points or so. He told me I had severe orthostatic hypotension, and possibly a disease that was causing this, amyloidosis.

Anyone else out there who ran into this at Mayo or another center? My cardiologists here first diagnosed me with POTS, but after my Mayo trip, they now say it's severe OI, too.

Great question to bring up, AJW.

Cheers,

Jana

[mkoven]

I guess the question is whether this changes your treatment. I was officially diagnosed at Cleveland, on meds. My hr did not hit 120, but did increase about 45bpm.

[juliegee]

ajw-

That must have felt like a huge torture session for NOTHING. What a waste of time! Of course you still have POTS. The fact that you needed medication to keep your HR and BP as normal (???) as they were speaks volumes. At Hopkins, you would have also been DXed with neurally mediated hypotension.

I forgot how SFN is DXed. But the fact that previous tests were conclusive should certainly point towards an etiology. Do those symptoms also wax and wane? If so, maybe they caught you on a good day .

You may be deconditiioned NOW as a result of your illness. But, were you out of shape when you first became ill? If you weren't, it's hard to point towards deconditioning as a cause.

It's almost as though they disregarded all previous testing/DXes and pretended you were searching for a brand new DX. This is probably a dumb question (and I bet I can answer it ) but what was your purpose in going there? What did you hope to achieve? My guess is that you were seeking a higher level of functioning- maybe by tweaking your current treatment plan. Maybe you wanted to rule out another cause of your symptoms? You certainly didn't get any of that . By telling you that you have neither POTS nor small fiber neuropathy, they have left you with noting. No reason for your symptoms. Very little room for improvement, other than to increase exercise.

The only experience I have with ANS docs is for my son. Whenever we've wanted to tweak Mack's treatment plan or rule out another cause of his symptoms, we went back to the place where he was initially DXed. Major research institutions certainly trust their OWN tests/DXes so you don't have to go back to square one. You may not have been able to go back to the original doc, but I wish your latest docs had trusted and taken the time to learn about your past. A complete medical history is a necessary & invaluable tool.

Please let us know WHERE you went for this testing. I think this should serve as a warning to others. I'm so sorry for this disappointment, drain of your time, energy, and money.

Hugs-

Julie

[toddm1960]

So if you don't have POTS why didn't they take you off the POTS meds you're on? Last I knew it was either 30 beat per minute increase or over 120bpm to dx POTS. Such mis-infomation out there in the medical community about all autonomic issues.

[flop]

AFAIK the criteria for POTS is a rise in HR of 30bpm or more OR a rise in HR to more than 120/min. You don't have to have both, eg HR of 50 to 85 still fits the criteria for POTS. Some doctors add to the definition that the rise in HR must be without a drop in BP but many of us do have a drop in BP too and are still diagnosed with POTS.

My first ever TTT showed HR 85 to 170 and BP 135/80 to 96/90. I was immediately diagnosed with POTS and started on medication.

When I went to London for further autonomic testing I had to stop my beta-blocker and midodrine (the left me on fludrocortisone). Due to the fludro and water/salt loading my numbers were much better than on my first two TTT at home but the doctor took the medication into account and wrote in his report that the responses were blunted due to my increased blood volume from medication.

About the episode with very low BP, technically if you didn't loose consciousness then it wasn't an actual faint but a pre-faint.

For clarification:

NCS = neurocardiogenic syncope (vagal nerve causing loss of consciousness)

NMH = neurally mediated hypotension (vagal nerve causing low BP)

faint = syncope = NCS (all 3 words mean exactly the same).

NMH (Neuro mediated hypotension) = big drop in BP, it doesn't actually mean fainting but I know Dr Rowe uses NMH to mean the same as NCS.

[flop]

Sorry I'm posting from my iPod (it is 5am in the UK but I can't sleep) and I can't scroll down in the window to edit or finish my post - I'll tidy it up from my laptop tomorrow.

I would write to the doctor in charge of your recent testing and emphasise that the meds you are taking are what prevents you showing responses like you did in your original TTT. Ask if they took the meds into consideration when telling you that you don't have POTS despite previous tests showing POTS.

About the small fiber neuropathy - has these been proven by biopsy (I think that biopsy is the only way to definitively prove SFN even though other tests can suggest that it is present).

Also explain that the reason for your visit was seeking better medication to improve your ability to function and that now your diagnosis has been changed that you don't know where you stand. It is possible that the doctor reporting your tests doesn't even realise that you were on medication at the time.

Hope you get some answers,

Flop

[Chaos]

How incredibly frustrating this whole experience must have been! Can you please let us know where you went and had this experience? I am trying to get a referral to one of these places and sure don't want to waste time and money with a doctor like you seem to have had the unfortunate experience of meeting with.

On all the sites I have been looking at the definition of POTS still is a 30 BPM or more increase over the first 10 minutes of standing. I do remember seeing one article where they were proposing that to qualify as POTS the heart rate should be exceeding 120 BPM but that was only one site and it sure doesn't seem to be universally accepted as the ONLY criteria.

For so many of us who've had years of odd symptoms without a "cause" for them, having a NAME for the whole thing is so important and somehow validates all the crud we've dealt with for years. How frustrating to have the doctor rip that away from you. It really seems silly for him to say that because the meds are helping you that you no longer have the problem. Let's see... how many doctors tell diabetics that they no longer have diabetes because insulin is controlling their symptoms? It makes no sense at all.

Thanks for letting us know about this. Sorry you had the experience like this.

[ajw4790]

So... where to even start!?

I apologize that it took me a while to reply, but the frustration etc. from this appointment has led me to almost have to go through a recovery process that is taking me through this rollercoaster of thoughts and emotions.

I was at the hospital for testing from early Monday to late afternoon the following Tuesday. So, it was 9 days of "torture" for this incredibly useless outcome. (I realize that the experience could vary greatly for each patient. It depends on the doctors you are dealing with, what you go in there knowing about your condition, what you want from the stay, and what are your medical issues.)

Contrary to what I had seen many post I had to have all my testing repeated. They insisted that it be done their way. I thought it to be a little much because I had already had 3 TTT and 2 QSARTs and just about every other test once before. I went with the POTS and Small Fiber Neuropathy diagnoses already established and agreed upon by my starting medical system (The Ohio State Medical Center), Cleveland Clinic, and Dr. Grubb at the University of Toledo. Therefore, I went NOT for a 2nd or 3rd opinion (which I explained to them, because that is what they decided I wanted, but they never "GOT" it.) I went for more specific testing that I thought this institution could offer, and then using the team approach of the clinic additional ideas on treatment methods. I was not looking for a magic pill, wand, or for another opinion, but for more assistance in making my symptoms less, to increase my quality of life. When I arrived at the clinic I really had hoped to look at my gastro. problems in detail, as they have been some of my worst symptoms, and greatly affect my diet, which greatly affects my weight, which affects in turn my other symptoms... I also have had issues having my eyes properly checked, so I wanted to see an opthamologist. I also wanted my kidney/bladder pain looked at... In other words I was going for the team approach on my healthcare. BUT, when I got there they already had my week pretty full. And then after the first dr. appointment my week was very full and spilling into the next week. And I had to specifically ask for a gastro. referral. Because, of having all the other testing I could see that the rest of my issues would not be able to be addressed in a weeks time.

I had three to seven appointments a day. Many fasting... It was not fun. I had the neuro. dept. TTT and Autonomic Testing, QSART, blood tests (20 vials!!!), Two 24 urine tests, EKG, Echo, chest x-ray, stress test, sweat test (the one with the purple powder), Endocrine blood tests testing catecholamines, Cardiac TTT, Sensory testing (QST or whatever), Holter monitor, and appointments with multiple doctors and specialists.

I have more to add to answer y'alls questions and to ask more of mine, but I feel awful and need to eat, so I am taking a break. It is getting long anyways!

Thanks for everyones ideas and everything!

[ajw4790]

Some of the "answers" I did receive...

That I do not have EDS according to a geneticist at the clinic.

That according to my 24 hour urine test I do drink enough and consume the appropriate amount of sodium. So, at least I am doing something right! And, so evidently this the best way to determine if you are drinking enough and consuming enough sodium. I had not had this test previously, so that was helpful news.

My heart is healthy in structure and electrophysiology. I already knew this, but it is good to have a more thorough check up.

Genetics play a big role for me, but there is not anything that they can pinpoint.

Oh, and the Holter monitor that they do also has a 24 hour BP monitor. I had not had the 24 hour BP test before. I do not believe that it showed anything, but it was something that had not been tested before. It squeezed the crap out of my arm, and drove me batty though! And I still have electrode burns from the holter monitor over a week later. Those things are completely awful- even the sensitive skin ones that they used! It did not help that I had electrodes applied and torn off for at least 5 prior tests!

I am posting things slowly, as my brain fogginess is not allowing for a long typefest.

[mkoven]

I guess the question is still where does this leave you? Does not having eds change anything? I've heard mixed things aobut their diagnosis of eds.

For myself, this is what I've been told. I have a hereditary connective tissue disorder that is atypical. for all intents and purposes, one can call it eds, but a purist might say no. i'm not super bendy, but my tissue tears very easily, whereas others with eds might stretch further before tearing. fortunately, francomano, a real leader in the research, gets the big picture. my tissue is fragile and i have all of the accompanying risks that someone with eds has. so, instead of just "ruling out eds," she validates that there is a problem, and I still need to be monitored and handled with care. but just ruling stuff out, but not explaining, where does that leave you? (BTW, I had a mixed experience at the same clinic in 2003, before we knew about my ans or connective tissue stuff, but that's another story for another day.)

[ajw4790]

I don't think not having EDS changes my treatment. My drs. have always gone back and forth in it, so it never really affected my treatment before.

Even though they arrived at different diagnoses than what I had been given before, they said that the treatment was the same for my previous diagnoses and the ones that they gave me. So, that is why they could not understand my frustration. They also could not believe that a simple response of "well, our tests are just better. And, the other tests are wrong." was an adequate enough answer to why I should believe their test results over the others that backed each other up.

For the SFN I have had both multiple QSARTS and a skin biopsy. They did demonstrate small fiber neuropathy. But, the most recent tests did not show enough evidence for them to make that diagnosis.

For my abdominal pain they diagnosed it as Fibromyalgia of the digestive tract and abdominal wall. Has anyone else had a similar diagnosis or know anything about this???