Has anyone else had all the symptoms of POTS but "failed" the tilt table test? Is this common or uncommon?
I have severe POTS, however I've never failed the test. I failed the test when bedridden and when in a rare much better phase where I could stand up and walk around. That is me though, and we're all individual.
As Alex said in his usual concise and accurate way, you could have another disorder causing your symptoms! POTS is
specific and diagnosis focuses on
heart rate for the test. There are plenty other reasons to have the symptoms you listed including:
1]Blood sugar levels
2]Hormone levels
3]Ambient temperature too hot
4]A stressor affecting blood flow (links to 1-3)
5]Lack of sleep
6]Psychologicals stress
7]Allergies including food allergies (Note allergy will make autonomic dysfunction worse)
8]Post exertional effect of ME/CFS: In CFS, exertion can simply mean sitting/standing/thinking!
9]Undiagnosed condition, primarily cardiac/circulatory.
10] Undiagnosed partial seizure disorder.
+ others I can't think of right now!
If none of these seem possible to you, we'd need to know what you mean by
'fail' a TILT test?
Fail as in BP within normal range?
Fail as in heart rate within normal range?
Or, fail as in...you still fell ill (during TILT test or intermittently during the day),
but have no 'proof'. (E.g delayed orthostatic Intolerance). I think you might mean this, I'd also say this is more likely an ME CFS symptom, than one specific type of autonomic dysfunction (POTS) found in those with ME CFS, and also without.
Here's my opinion as someone with severe POTS.
In terms of a diagnosis, if you have POTS, you'd likely fail the TILT test in minutes *without medication*. Without medication in POTS, your pulse rate would be high. In addition if you have a sympathetic nervous system dysfunction (core symptom of ME) away from POTS (but including POTS!), the stress of the test might make you very anxious/nervous before hand and trigger chest pain, shaking, ice cold hands (even if you aren't psychologically scared). This is because in ME CFS/POTS, your dysfunctional nervous system would create this dysfunctional response when facing stress - due to having dysautonomia. BUT, here's the problem,
having diagnosed dysautonomia may well feature in many with ME CFS, yet it isn't a requirement to have it. Thus, your ME CFS diagnosis still stands.
Possible idea:
In that respect if your doctor says you ''failed'' the TILT test, check they mean:
1) POTS unproven
2) Anything associated to an abnormal finding (pre syncope/syncope) unproven
Then consider the following medical questions and see if they have been answered appropriately:
*Ask for a read out of the: Pulse rate (ECG if no specialist equipment was used), BP during your entire TILT test.
*Check there were no significant changes from resting (calm as possible) to being tilted upright.
*See if they or your reported and increase in symptoms (sweating, restlessness, nausea, faintness, anxiety etc).
Also ask if they did beat to beat blood pressure monitoring during the test. Personally, I would insist this is done if the equipment was available of course! You'll know if you had it done as it's a finger sensor that is measuring your BP in real time, that 'pulses on your finger but secured via velcro on your wrist, quite firmly. It feels like a heart beat so patients can worry and think it's their heart rate racing during the test when it's the machine constantly monitoring your blood pressure creating the illusion.
Here is a photo of the apparatus they use, it's very expensive and most 'standard' hospitals won't have it (I think it's $60,000+ for the machine, or used to be):
https://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38921
If you can tolerate a TILT for 60 mins and all measurements were normal, then naturally a doctor will conclude you don't have a problem in this area. However, a TILT test doesn't measure your brain blood flow, and also other complex measurements like cardiac output/stroke volume.
There's been some good research in America over the years. I'll focus on Dr Peckerman's group and their work in CFS.
Among subjects who completed the test, those with CFS had higher heart rate
and smaller stroke volume (P < 0.05) than corresponding control subjects. When comparing those who had a positive test outcome in each group, CFS patients had higher heart rates and lower pulse pressure and pulsatile-systolic areas
during the last 4 min before being returned to supine (P < 0.05). These data show that there are baseline differences in the cardiovascular profiles of CFS patients when compared with control subjects
and that this profile is maintained during head-up tilt. However, the frequency of positive tilts and the haemodynamic adjustments made to this orthostatic challenge are not different between groups.
Source:
Cardiovascular response during head-up tilt in chronic fatigue syndrome.
LaManca JJ1, Peckerman A, Walker J, Kesil W, Cook S, Taylor A, Natelson BH.
1999
This paper, is also fascinating. It demonstrates simply 'thinking', affects your heart output in CFS. Quite incredible, but not so if you again remember CFS patients are always exhausted, using your brain takes massive of energy, and thus if massively energy deficient to begin with with a systemic disease process of lack of energy, then thinking may well reduce cardiac output in someone with a devastating energy disease (CFS) if they have autonomic dysfunction, which controls blood flow, and is super reactive to stress. (Dysautonomia and 'fatigue' go hand in hand). Your brain automatically widens (dilates) and constricts (narrows) arteries that make blood circulate. That's why those with ME CFS/POTS can get short of breath and have so many other awful symptoms, that swing on/off, they come an go. That's classic autonomic dysfunction, and not a 'chronic fatigue' problem, as the CDC pretend.
Women with CFS have a diminished cardiovascular response
to cognitive stress; however, exercise did not magnify this effect. Also, the data showed that the patients with the lowest cardiovascular reactivity had the highest ratings of CFS symptom severity, which suggests that
the individual response of the patient with CFS to stress plays a role in the common complaint of symptoms worsening after stress.
Source:
Cardiovascular responses of women with chronic fatigue syndrome to stressful cognitive testing before and after strenuous exercise.
LaManca JJ1, Peckerman A, Sisto SA, DeLuca J, Cook S, Natelson BH.
2001.
This is the paper, Dr Cheney (American CFS expert) likes the most. It's quite a shocking finding:
The patients
with severe CFS had significantly lower stroke volume and cardiac output
than the controls and less ill patients. Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms
showed no specific association with cardiac output.
Source:
Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome.
Peckerman A1, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH.
2003
I've posted those above, namely to demonstrate you can have CFS, not have POTS, and still have a screwed up circulation system. Thus it's not a disaster if you don't have POTS, and actually, (speaking from someone who has it), you don't want it.
Neuropsychiatric symptoms above in that paper, refers to anxiety. Anxiety will increase your BP and thus cardiac output (potentially 'falsifying' results), however, the researchers showed this was irrelevant to their findings in severe grade CFS.
It's extremely difficult to 'convince' cardiologists or neurologists to 'copy' my following suggestion, but you may be able to have this test done (impedance cardiography) with an colour doppler on your heart (during the test) and also to have a 'cranial doppler' to see if blood flow in your head alters when upright.
Image of transcranial doppler below:
http://www.neurology.org/content/77/9/844/F2.large.jpg
Very brief description. (Notice none of the patients are 'standing' on a TILT test) - what we need in my opinion in ME CFS POTS, as our symptoms worsen when upright!
http://www.ultrasound.edu/benefits-of-transcranial-doppler-ultrasound/
To have this ordered is complex, and fiddly, and expensive. Staff won't do it just if you ask, it would have to pre-arranged, and the machine would need to be 'borrowed' and wheeled in, just for you. Unless this is privately ordered, it's going to be impossible to do this in my view. Still, it's just an idea to consider, even if it's a fantasy.
You may still have others reasons for your symptoms, for example you might have a fluctuating condition called
vasovagal syncope, but on that test, on that day, you didn't faint or feel faint and your brain/blood pressure was behaving.
I hope you get answers. Dysautonomia is legendary in terms of being difficult to separate from anxiety disorders or other diagnosis (such as CFS), however, with the right equipment and the tests being performed in the correct manner by professional people (sometimes private clinics are less thoroughly than university hospitals), then I'd be reassured you can either accept a 'null' POTS diagnosis, or repeat it again to rule that out and go for another condition.
Hope it works out for you and good luck.