"Failed" tilt table test

[meadowlark]

Hello all. I was diagnosed with ME/CFS in 2000, after 20 years of being sick (in a peculiar way
--inflammation, numbness and migraine pain down my entire left side, head to toe, every day. I lived on Fiorinal). By about 1999 I had also developed about half the symptoms of the Canadian criteria. These included what seemed to be POTS. Specifically, I feel lightheaded and dizzy after walking for three to fifteen minutes, depending on the day. I also feel like all the blood had drained to my hands and feet, which feel bloated and almost too heavy to lift. I would sometimes fall simply because I mistakenly hadn't lifted my feet enough. (I have never fainted, because I sit or lie down first--e.g. I will sit down on a city sidewalk, in front of strangers--if I think I am going to black out.)

Finally, two weeks ago, I was given an hour-long tilt table test. And I checked out just fine. The neurologist was very kind, and said he had seen several ME/CFSers who didn't check out any better than I did. Now, I realize that I consider a finding of POTS to be a "positive" thing, and that that is ironic... but like a lot of people., I get desperate for an answer, or at least to be able to check a single box on someone's list.

Has anyone else had all the symptoms of POTS but "failed" the tilt table test? Is this common or uncommon?

 

[alex3619]

I have heard of such cases. Some people also fail at one time and not at another.

Not all of us who show problems on a TTT have POTS though. Many of us have other types of OI including NMH. POTS is only one kind, though common.

Yet it must be recalled a large number of patients do not have provable OI. This might or might not indicate a subgroup.

However pre-syncope is a good sign something is wrong. Maybe someone can suggest something. In my experience there are times when my OI is a big issue, and other times I would never know I had it.

 

[*GG*]

Isn't there a device that can monitor you for 24 hours or longer?

Maybe that is just for blood pressure or heart rate? Although I think blood pressure thing would work, right?

GG

 

[Research 1st]

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.

 

[Research 1st]

Isn't there a device that can monitor you for 24 hours or longer?

Maybe that is just for blood pressure or heart rate? Although I think blood pressure thing would work, right?

GG

Hi

Yes, you can get 24hr Blood pressure monitoring ordered by a GP or cardiologist, but it's not 'real time'. Mine pumped up (maybe I had an old one?) every 30 mins during day time, and every 60 mins at night time. Fine, but it misses any events you have in between.

http://www.suntechmed.com/bp-devices-and-cuffs/ambulatory-blood-pressure-monitoring

For very accurate BP monitoring during a TILT test, you need 'beat to beat' blood pressure monitoring but this requires a large cumbersome PC in a hospital/clinic, and it's a very expensive piece of kit. This is kind of annoying, as with POTS/Dysautonomia.

On a side note quickly....
Another useful test of autonomic dysfunction in ME/CFS/POTS is a valsalva manoeuvre:
https://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38918

Back on topic about BP!

The one's patients use (ambulatory blood pressure monitoring), is just a little box you wear on your hip or around your neck.

I've also thought when a patient has this strapped to them, you're naturally going to be less active, because you don't want to damage the equipment and tend to be much more careful how you stand up/sit down etc. Ohh, and you can't have a bath, so it misses a possible drop in BP during/after that. What we need is miniturised, real time BP monitoring we can be 'free' in, move around, wash, do anything and for days at a time. In ME CFS POTS, I think that would be a 'game changer', because we catch our strange events we get, randomly, rather than catch one by sheer luck with conventional equipment (BP I mean, not ECG - you can get ECG that lasts days at a time). E.g 5 day ECG.

 

[panckage]

I'm not sure if it means anything. While I've never been tested I am pretty sure I have POTS. That being said sometimes my POTS symptoms are small or non-existent. I think it varies, especially for the less severe among us. What was the severity of your POTS symptoms on the day of the test?

 

[Research 1st]

I'm not sure if it means anything. While I've never been tested I am pretty sure I have POTS. That being said sometimes my POTS symptoms are small or non-existent. I think it varies, especially for the less severe among us. What was the severity of your POTS symptoms on the day of the test?

Hi.

You may well have POTS, but you need a test to confirm. I hope your doctor can order your a TILT test? I only got my diagnosis after many episodes of being ejected out of ER with alleged 'panic attacks'. (Common story with POTS patients unfortunately). Well, worse than that but I won't depress people more than my usual level!

Do try and make sure you have the right diagnosis if possible and don't rely on just taking your pulse!

A fast heart rate doesn't equal POTS. Lots of issues cause a fast heart rate on/off, and that's why all ME CFS patients should be given access to a TILT test with 24hr ECG and 24hr BP monitoring. But, the CDC are resistant to biomedical CFS and prefer CFS to be an eternal mystery based on chronic fatigue. This is a tragedy for the patients, and more so, if you have undiagnosed conditions (such as POTS), that can have medications to reduce symptoms.

In contrast, no one gets these medications with ME CFS (E.g. Midodrine) as they aren't licensed for ME CFS to treat the symptoms! Even in POTS, the drugs aren't licensed either for POTS (e.g Ivabradine - actually an Angina drug), however, they're prescribed by doctors who agree to take you on as a named patient, e.g.. the doctor carries the can, if anything happens to you (they'll only do this, if you demonstrate you have POTS or other forms of autonomic dysfunction first, thus you need the tests that aren't part of the CFS diagnosis screening).

Patients who learn they have POTS, constantly get misdiagnosed with CFS before hand. After all, the symptoms are near identical. In a strange twist, if you have POTS you can't have CFS (using CDC criteria), because a diagnosis of CFS requires that chronic fatigue is not explained and is a mystery. In contrast autonomic dysfunction is directly associated to severe fatigue states! Hence it's so sad to me, that so many patients with CFS cannot physically walk, but have no idea they really have a hidden autonomic dysfunction. They aren't told, and aren't given access to a TILT table test or other associated tests for autonomic dysfunction, before, the decision is made, that they have CFS and fobbed off with CBT/GE.

I should also add, that tachycardia is just one symptom of POTS. What makes you disabled in POTS is having autonomic dysfunction, not just a heart rate that's too fast sitting up or standing. Someone with POTS will struggle with the following in addition to tachycardia. Note these aren't POTS symptoms to read up n, they are symptoms of autonomic dysfunction.

Pain, worsened with poor or no sleep (Autonomic dysfunction and pain are directly associated).
Total intolerance to heat and not sweating when you should do.
Hypereactive to chemicals/medications, especially anesthesia.
Confusion.
Cognitive dysfunction.
Cognitive decline worsened in upright position.
Low normal 24hr sodium levels
Renin/Aldosterone paradox. (Not all patients).
Supine Vs standing urine/plasma norepinephrine (Not all patients).
Antibodies to ganglionic acetylcholine receptors (g-AChR Ab) in children and adults. (Not all).
Low blood volume. (Not all patients).
Unable to maintain core temperature without artificial heat.
Sensitivity to blood sugar changes.
Eating food triggering: dizzyness, vertigo, seizures, breathing difficulty, and breathing rate changes. All the previous, without a known trigger e.g. centrally mediated vertigo (non viral).
Breathing pattern becoming snatching, too slow, too fast without psychological control.
Cardiac arrythmias, blackouts, near fainting (pre syncope).
Going to the toilet triggering above.
Exertional shortness of breath due to tachycardia.
Severe orthostatic Intolerance.
Shortness of breath with normal resting pulse rate and blood pressure (vasoconstriction)
Hot flushes.
Chills.
Quivering when eating/drinking.
Constipation and upset stomach (ANS controls bowels).
Swallowing difficulty.
Medications need to be low dose, if tolerated at all.
Stress ramps up adrenal dysfunction, excites brain waves = possible seizure trigger.
Infection stresses the body, and thus antagnosis dysautonomic patients.
Polyuria (peeing too much) and Nocturia (peeing all night) = ruined sleep.
Sleep disorders/Sleep apnea.

Nb: The above, are all features of 'severe ME' - but PWME aren't given a test to rule in autonomic dysfunction or POTS (specific form of autonomic dysfunction). Totally crazy, isn't it?

If you have POTS simply a thunderstorm or an argument could put you in hospital with chest pain or a shaking attack (exagerated sympathetic nervous system arousal, triggered by psychogenic input, leading to 'dysfunctional' brain reaction from this, the patient cannot easily 'turn off' - by becoming calm again). Naturally, when patients focus on tachycardia (POTS name contains tachycardia) then people think they have POTS, because of this, when actually, POTS has the symptoms of autonomic dysfunction, and it's this that ruins patients lives.

To make this massively more confusing biological 'real' CFS also does this, and ME does this, just no so pronounced
More so ME CFS can be progressive. This means at first you might not have many problems associated to standing up/walking with CFS, but 5 years later, you literally can't stand up anymore without a crazy pulse rate and a pounding chest. Patients may then be stuck to 'convince' their doctor to order a TILT test. This is because some doctors believe a CFS sufferers tachycardia, to always be 'anxiety'. This can be due to disbelief or past history. E.g. when they saw the CFS patient a few years back, they didn't report these symptoms. What a total nightmare for patients to cope with. To rule out psychogenic, (or other causes) tests are needed but the CDC and British NHS system of healthcare delivery (via NICE) steadfastly refuse to budge, because this then validates people suffering with their CFS ME as suffering from a neurological disease not a fatigue syndrome.

If you're interested or anyone else is, a useful forum for POTS sufferers is here:
http://forums.dinet.org/index.php?/forum/1-dysautonomia-discussion/

And on facebook
https://www.facebook.com/POTSawareness
https://www.facebook.com/POTS-UK-185492778170610

All the best, and if you can, get the test. I didn't know I had POTS for years and I wish I had known. Hence my enthusiasm in this thread.

 

[panckage]

Hi.You may well have POTS, but you need a test to confirm.
In contrast, no one gets these medications with ME CFS (E.g. Midodrine) as they aren't licensed for ME CFS to treat the symptoms!

I apologize.. I made a booboo. It would probably be more correct to say I think I have OI. I'm in Canada and to be honest I have no idea if I have been diagnosed with ME/fibro but my doctor still treats me for it (eg. I'm been given ritalin, lyrica, cymbalta, neurontin, etc). I don't know if my doctor is unusual but my doctor usually treats me for things aren't necessarily diagnosed

Anyways thanks for your post, very informative

 

[ahimsa]

@meadowlark

I'm not an expert in autonomic dysfunction at all, just a patient with NMH. So take what I say with a grain of salt.

But I have a few questions which might help.

1) Did you have any symptoms during the test?

If you didn't have any symptoms at all my guess is that you don't have any type of Orthostatic Intolerance (whether POTS or NMH/NCS or something else). But that's just my layperson's guess.

2) Were you perfectly still during the test?

If you were fidgeting and moving around a lot, or talking, that can keep your blood pressure up just enough that it might interfere with the test results.

3) Were you on any medication(s) that would help keep your blood pressure up? That might interfere with the test.

Not all ME/CFS patients have some form of autonomic dysfunction or orthostatic intolerance. It's included in the list of symptoms in some of the diagnostic criteria, including the new ME/CFS diagnostic criteria proposed by the IOM in their Feb. 2015 report.

But there are so many criteria out there that I get completely confused. I'm pretty sure that autonomic dysfunction is not part of the Fukuda diagnostic criteria, though.

 

[Research 1st]

Hi, glad it was of some help.

Regardng OI symptoms I'd stick with the ME CFS ideas and see if you can get some help that way first. If all else fails, if you can tolerate the pain, ask your doctor to see if you come off pain meds (that slow nerve firing) for a while for a 'test drive'. They do this in hospital sometimes, when patients come in on multiple meds with unexplained symptoms making their condition worse. When possible, they have the patient in for a few days and take the off the meds in what they call a drug 'holiday'.

The most common symptom of the class of drugs to reduce nerve firing (ideal for epilepsy and also neuralgias etc) is dizziness and vertigo and making people feel stoned and unable to think + worsening fatigue. If you look at the side effects that is also related ME CFS symptoms (difficulty breathing, blurred vision, difficulty concentration, anxiety, somnolence etc), it's a wonder it was even allowed as a drug in CFS. Lyrica or other anti epileptics might be messing around with your blood pressure when your stand up also, worsening OI.

As I'm sure you know, different classes of these drugs can affect you in different ways. Sometimes, the only way to discover if you are intolerant of a medication, is to come off it to see a before vs after effect. (Only under supervision of course, don't suddenly stop taking Lyrica as it's dangerous to do so). I would also add betablockers to this list. Medications can have a paradoxical effect, e.g. what is mean to reduce, it worsens! So one can become anxious on anxiety meds, that includes Lyrica and its related family (Gabapentin).

A 'new' version of Lyrica is coming out in a few years with fewer side effects. I forget the details, but I think it targets a specific receptor not just sodium channels directly which causes so many side effects. Someone will correct me, thankfully!

This odd paper below alludes to, that Lyricas predecessor, Neurotin (Gabapentin) stops new synapses forming, the inference being if you were on these classes of drugs when pregnant it might block brain cells of the baby forming at an optimal level and accelerate the ageing process of your brain too, possibly. Naturally, it's one paper only, and people who live in chronic pain have no option but to take the meds. However, if a 'cleaner' med was available, I'd swap to it when it's proven effective and safe. Hopefully only a few years from now.

These findings identify alpha2delta-1 as a receptor involved in excitatory synapse formation and suggest that gabapentin may function therapeutically by blocking new synapse formation.

Source:
Gabapentin Receptor α2δ-1 Is a Neuronal Thrombospondin Receptor Responsible for Excitatory CNS Synaptogenesis.
http://www.ncbi.nlm.nih.gov/pubmed/19818485

These links of side effects of known nerve pain drugs, might be of interest if you have puzzling symptoms that might be ME CFS but also might be explained by the drug manufacturer themselves too:

Side effects of Lyrica:
http://www.drugs.com/pro/lyrica.html

Side effects of Neurontin:
http://www.drugs.com/pro/neurontin.html

Side effects of Ritalin:
http://www.drugs.com/pro/ritalin.html

Side effects of Carbamazepine:
http://www.drugs.com/pro/carbamazepine.html

Side effects of Oxcarbazepine:
http://www.drugs.com/pro/oxcarbazepine.html

And to wrap this back on topic, all of the above can easily make POTS worse , ME CFS worse, and OI worse as they are slowing down your CNS, and thus the speed your brain works. Great for pain and seizures, not so good for a brain that is already slowed down, before taking meds, that slows your brain down even more.

Below is one explanation for all of this drugged dizzy feeling (before meds) in ME CFS, using CFS research:

Insights from the IACFSME Conference *Video presentation by Dr Bateman, 2014*
EEG (Brain Waves) + Brain Inflammation research discussion.
Fast forward the video to 41.00 elapsed

Imagine all of this going on, then having to medicate yourself with medications with side effects known to slow your brain speed down = certain increase in symptoms in those with ME CFS, much worse than your average person who is healthy, but who has seizures or another pain disorder.

 

[Kati]

Hello all. I was diagnosed with ME/CFS in 2000, after 20 years of being sick (in a peculiar way
--inflammation, numbness and migraine pain down my entire left side, head to toe, every day. I lived on Fiorinal). By about 1999 I had also developed about half the symptoms of the Canadian criteria. These included what seemed to be POTS. Specifically, I feel lightheaded and dizzy after walking for three to fifteen minutes, depending on the day. I also feel like all the blood had drained to my hands and feet, which feel bloated and almost too heavy to lift. I would sometimes fall simply because I mistakenly hadn't lifted my feet enough. (I have never fainted, because I sit or lie down first--e.g. I will sit down on a city sidewalk, in front of strangers--if I think I am going to black out.)

Finally, two weeks ago, I was given an hour-long tilt table test. And I checked out just fine. The neurologist was very kind, and said he had seen several ME/CFSers who didn't check out any better than I did. Now, I realize that I consider a finding of POTS to be a "positive" thing, and that that is ironic... but like a lot of people., I get desperate for an answer, or at least to be able to check a single box on someone's list.

Has anyone else had all the symptoms of POTS but "failed" the tilt table test? Is this common or uncommon?

Hi Meadowlark, can you explain exactly how the test was executed? You were tilted on a real table right, not asked to stand? They used the beat to beat technology to measure your heart rate? You were not allowed to move at all, right?

 

[alex3619]

The tilt table test dates back to about 1940, or earlier. The 1940 paper, at least part of which I read some years ago, nailed the symptoms and possible issues. In the 75 years since there has been little in advances. It took till 1995 for this test to be used in a CFS study designed to evaluate the test, though it had been used by some doctors for maybe a decade before that. I do not recall if its been formally used in an ME study designed to test it, though it seems an obvious thing to do. Most doctors do not order one. Indeed I am aware of a claim that a major hospital in South Australia abolished the facilities for the test because a whole year went by without anyone using it.

A tilt table test is one of the tests I would like to see used in most diagnostic workups for CFS, CFS-like and ME diagnostic consideration. For milder patients I would like to see the 2 day CPET offered. For every patient I think a quantitative EEG should be considered mandatory, as well as a sleep study. These are in addition to the usual tests most docs do in a diagnostic workup.

 

[meadowlark]

Thank you all for the answers. I wish I could use "multiquote" but it seems that I can't right now. (I've succeeded from time to time, but this is one of those cognitive things that flickers on and off.)

Those are reassuring words, Alex, as I often think I am going crazy. The bizarre 20-year buildup (left side of body inflamed) to the diagnosis often makes me wonder if I'm some kind of outlier.

ggingues:

"Isn't there a device that can monitor you for 24 hours or longer? Maybe that is just for blood pressure or heart rate?" ............ Yes, I've had my heart rate monitored for 24 hours; it was fine.

Research 1st:

"Fail as in BP within normal range? Fail as in heart rate within normal range?" ............He meant "fail" in a joking way, as in "you've failed to qualify as having orthostatic intolerance." My heart rate and blood pressure were in a normal range, and their numbers corresponded in an appropriate way.

"Also ask if they did beat to beat blood pressure monitoring during the test. " ............. Yes, they did it beat to beat.

" you can have CFS, not have POTS, and still have a screwed up circulation system." The only noticeable problem with my circulation was a very strange one: three years ago, my blood pressure jumped up to 189 over 126 for no known reason, and stayed that way for ten days before slowly returning to normal. I've never been so frightened in my life.

"Ask for ... pulse rate (ECG if no specialist equipment was used)" ............ Yes, they did an ECG first.

"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)" ............That's the exact apparatus! (Toronto General Hospital.)

ahimsa:

"Were you perfectly still during the test?" ............ Yes, still and relaxed. I began my career, decades ago, as an actress, and learned to wind myself down almost instantly. For instance, I once played a character who died in intermission and was put in her coffin in the second act. I had to lie in that coffin for half an hour--and one night, fell asleep there! (At the end of the scene, they closed the coffin on me and carried me/it on their shoulders to the wings, where I got out, quick smart.)

"Were you on any medication(s) that would help keep your blood pressure up?" ............ No medications whatsoever.

Kati: "Hi Meadowlark, can you explain exactly how the test was executed? You were tilted on a real table right, not asked to stand? They used the beat to beat technology to measure your heart rate? You were not allowed to move at all, right?" ............ Yes, beat to beat, on an actual table (which tilted), with the $60,000+ plus machine. With the ECG, the whole thing took about 90 minutes.

* * * * * * *

Someone asked (and I can't find it now) what kind of day I was having during the test, in terms of the symptoms I described. It was an average day that way, which for me means I could have walked four blocks, rested an hour, and returned four blocks before losing all spark.

I do wish I could figure out why my ability to move forward (even crawling forward) collapses this way, but I guess that this wasn't the answer, or it isn't an answer that would be caught on that day.

Thank you, everyone, for your answers.

 

[alex3619]

Something one specialist noted, a very long time ago, while I was at a CFS research seminar, is about test timing. He was a cardiologist, and tested his patients at a specific time of day (but I no longer recall if it was morning or afternoon). It seemed, to him, that time of day mattered.

 

[Kati]

@meadowlark with the symptoms you have it is clear that you have issues with orthostatic intolerance. Myself I have had 2 different tilt tests, once by dr Klimas, and the second one by a so called expert who works with paraplegic so while he had state of the art cardiac monitoring equipment, he made me stand up- and never found what dr Klimas found and refused to follow me or even confirm the POTS diagnosis.

Frustrating. So sorry.

 

[Sasha]

I also failed a TTT (proper table, cardiologist, 45 mins, didn't move a muscle, calm and relaxed throughout) and had normal findings. So disappointing, because my symptoms so clearly seem to point to delayed OI. I was having a better day when I went but that was still an appalling day by the standards of anyone healthy. I was amazed when the test was negative.

 

[meadowlark]

Sasha: "I also failed a TTT ... I was amazed when the test was negative." I was amazed too, but downshifted quickly into "resignation" rather than despair. Like most everyone, I have never had a "finding" of any kind about my condition, other than that short period of off-the-charts blood pressure mentioned above. I think that (because of my strange, 20-year pain condition before diagnosis) I am scared that when/if medication is available, it won't will work for me, as it will be decided I don't have ME/CFS, but something that mysteriously overlaps it. But I don't "go there" very often... it's a bridge too far, in terms of my coping mechanisms.

To me, the upside of my tilt table test was the neurologist at Toronto General. He harboured no doubts about ME/CFS as well as fibro, and said he had seen a few other people whose symptoms weren't reflected in the test results.