Has it lost effectiveness?
Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms
Has it lost effectiveness?
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No. I started taking it 15 years ago. With age, my blood pressure increased and the fludricortisone caused hypertension. I tapered off the drug recently and luckily haven't had much of a problem with NMH to date.
Before I went non fludricortisone, I was unable to sit up for more than 15 minutes.
Gingergrrl
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Okay will vote yes. Just wanted to make sure!
jimmy86
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I did a TTT and my heart rate increase was >30 with increase in blood pressure. The QSART test however was negative. Doc concluded I have hyperadrenergic pots and prescribed (low dose) beta blockers.
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Ellkaye
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Orthostatic Intolerance is a cardiac complication i believe. Different to ME?
halcyon
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Orthostatic tachycardia is a hallmark symptom of ME.
It's often neurological, instead of cardiac. It's an extremely common symptom of ME, though a lot of people without ME have Orthostatic Intolerance by itself.
I don't want to derail this thread, but is the treatment of neuro OI different from that of cardio (the latter seems to be based on an exercise reconditioning model, ultimately)?
Yes, I think the treatment options vary a lot depending on the underlying pathology. Some drugs function by decreasing the heart rate, for example, which might be a really bad idea if the heart rate has been rising to compensate for low blood pressure.
I really wish doctors would look into OI causes and treatments very thoroughly for ME patients
JaimeS
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Got complete autonomic testing done at Mayo in Rochester, MN. This included TTT, sweat pressor test, Valsalva, blah-de-blah-blah. My response is kind of in between.
As discussed elsewhere, I had a horrible reaction to the TTT. The idiots were telling me to find the point of focus they'd suggested I try to find before starting... only they were standing in front of it as they tried to placate me. I thought I was going to pass out, but I was strapped in place (obviously), so I couldn't sit down. The test before that had been electroshock (I kid you not). The physical and psychological factors swirled together nastily and I cried.
That was that. I was clearly 'hysterical'. The fact that I had cried, they said, would have an adverse effect on the data.
Cooler heads prevailed. One autonomic specialist said that a spike of norepi could have provoked that sort of emotional response, which is a feature in certain kinds of OI. And the neurologist who'd sent me for the autonomic panel in the first place had done a 'poor man's TTT' in my initial exam. "I hardly think you were 'upset' then," he groused, "unless standing up makes you upset."
He suggested that when I felt dizzy I take a pinch of salt in water. Not enough to make the water taste salty. Baking soda would also do. I mentioned Vinpocetine, and we discussed why I found that helpful (it seems kind of paradoxical). He made several suggestions for meds in the future, if the simple, cheap solution didn't help. (Solution! Ha!)
So I got tested and I got help. But my experience was fraught. Not only that, but the autonomic specialist wanted to do more tests, while the mainstream neuro diagnosed POTS. I think the autonomic specialist wanted to know what was actually happening from a scientific standpoint. To him, the norepi spike made my OI look like a cool, less common version that they'd like to study. In contrast, the neuro wanted to tell me the fastest, safest way to improve my QOL right then. He provided a long, drawn-out piece of paperwork that explicated his argument that I had POTS. I was able to take this to my local neuro and discuss it with him. In turn, he promised to provide scrips as needed.
TL;DR... I got help but it was like pulling teeth.
-J
As discussed elsewhere, I had a horrible reaction to the TTT. The idiots were telling me to find the point of focus they'd suggested I try to find before starting... only they were standing in front of it as they tried to placate me. I thought I was going to pass out, but I was strapped in place (obviously), so I couldn't sit down. The test before that had been electroshock (I kid you not). The physical and psychological factors swirled together nastily and I cried.
That was that. I was clearly 'hysterical'. The fact that I had cried, they said, would have an adverse effect on the data.
Cooler heads prevailed. One autonomic specialist said that a spike of norepi could have provoked that sort of emotional response, which is a feature in certain kinds of OI. And the neurologist who'd sent me for the autonomic panel in the first place had done a 'poor man's TTT' in my initial exam. "I hardly think you were 'upset' then," he groused, "unless standing up makes you upset."
He suggested that when I felt dizzy I take a pinch of salt in water. Not enough to make the water taste salty. Baking soda would also do. I mentioned Vinpocetine, and we discussed why I found that helpful (it seems kind of paradoxical). He made several suggestions for meds in the future, if the simple, cheap solution didn't help. (Solution! Ha!)
So I got tested and I got help. But my experience was fraught. Not only that, but the autonomic specialist wanted to do more tests, while the mainstream neuro diagnosed POTS. I think the autonomic specialist wanted to know what was actually happening from a scientific standpoint. To him, the norepi spike made my OI look like a cool, less common version that they'd like to study. In contrast, the neuro wanted to tell me the fastest, safest way to improve my QOL right then. He provided a long, drawn-out piece of paperwork that explicated his argument that I had POTS. I was able to take this to my local neuro and discuss it with him. In turn, he promised to provide scrips as needed.
TL;DR... I got help but it was like pulling teeth.
-J
halcyon
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Out of curiosity, did they give you the autoimmune dysautonomia test panel at all?
JaimeS
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Mayo wanted to keep going, but I ran out of time, money, and energy. (I cancelled my flight back home twice, to accommodate more testing.) I stopped just before going to the autonomic specialist, without the feeling that we were making actual progress. Many things were uncovered, and it's nice to have the 'paperwork', but I was not any closer to a comprehensive diagnosis than before.
After looking through the tests listed, I was given several of those as part of other panels. However, I was not tested for the vast majority of what's found there.
-J
halcyon
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I've heard that's Mayo's specialty, wallet biopsy.
JaimeS
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Hahaha, yeah. In a way, I respect their thorough method. However, I told them that general testing wouldn't show anything, and that I needed to see people in endo, neuro, and immune. (I'd gotten CBC and basic endo blood values multiple times in the recent past, and a few of the more specialized endo tests done already.) I never even got to immune, though they tested me for a few of the 'usual suspects' right off the bat: Lyme and Bartonella, I think.
-J
MEPatient345
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Hi @bertiedog , just wondering what make oxygen concentrator you bought? I am looking online, and saw this one which does 4.5lpm on Amazon. https://www.amazon.co.uk/Denshine-P..._UL160_SR160,160_&refRID=W9ZCEAKHW0TJ2287Q514
Confused at how some are much more expensive, like ,€1500 or more.
Confused at how some are much more expensive, like ,€1500 or more.
bertiedog
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@ellesbelles My present one was from EBay and they are now down to £250 if I remember. It delivers 5 litres per minute. The one on Ebay isn't identical to mine but very similar and looks almost the same. I think they are brilliant because you can take it with you in the car and top-up as you go along if necessary.
I did have a full standing one originally which cost nearly £700 but I sold it because it was no better than this cheap one and also took up a lot of space.
Agreed it is confusing when there are some that are so expensive. I don't think it's worth going below 5 litlres a minute. I still use mine 3 times daily for at least 30 minutes usually straight after eating or when I come back from walking my dog and have very little energy left. It tops me up and I thoroughly recommend it! I wouldn't be able to do half of what I do manage without one.
Pam
I did have a full standing one originally which cost nearly £700 but I sold it because it was no better than this cheap one and also took up a lot of space.
Agreed it is confusing when there are some that are so expensive. I don't think it's worth going below 5 litlres a minute. I still use mine 3 times daily for at least 30 minutes usually straight after eating or when I come back from walking my dog and have very little energy left. It tops me up and I thoroughly recommend it! I wouldn't be able to do half of what I do manage without one.
Pam
Hell...Hath...No...Fury..
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I was tested after doing my own poor mans tilt test then taking results to GP and explaining what they meant to her as she had no idea.
Went through three hours of interogation and insults by the staff who work in the same department as Prof. Julia Newton, straight after doing the tilt.
Dismissing my very clear result of POTS (wouldn't tell me the result at the time) and insinuating anxiety and deconditioning and hinting at taking my wheelchair off me because sitting in one has caused me to have POTS in the first place, even though i had it long before wheelchair useage.
Point blank refusing to give me the POTS diagnosis asking why I think its so important to get a diagnosis anyway as its pointless
Next time saw Julia Newton who diagnosed the POTS instead saying thats what the results are, therefore thats what i've got.
But i was given two different meds to lower the tachy, which kept my heart rate steady with no spiking. Unfortunately the constant lower heart rate (70's approx) put me into a deeper and deeper trance as each day passed until after a week, i was almost catatonic sitting staring at a wall, drooling because my brain was too foggy to remember to keep swallowing or remember to eat etc.
Within days of stopping the meds my tachy was back and my brain went back to my usual level of ME functioning.
Went through three hours of interogation and insults by the staff who work in the same department as Prof. Julia Newton, straight after doing the tilt.
Dismissing my very clear result of POTS (wouldn't tell me the result at the time) and insinuating anxiety and deconditioning and hinting at taking my wheelchair off me because sitting in one has caused me to have POTS in the first place, even though i had it long before wheelchair useage.
Point blank refusing to give me the POTS diagnosis asking why I think its so important to get a diagnosis anyway as its pointless
Next time saw Julia Newton who diagnosed the POTS instead saying thats what the results are, therefore thats what i've got.
But i was given two different meds to lower the tachy, which kept my heart rate steady with no spiking. Unfortunately the constant lower heart rate (70's approx) put me into a deeper and deeper trance as each day passed until after a week, i was almost catatonic sitting staring at a wall, drooling because my brain was too foggy to remember to keep swallowing or remember to eat etc.
Within days of stopping the meds my tachy was back and my brain went back to my usual level of ME functioning.
Gingergrrl
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Wanted to add an update to this thread (sorry @halcyon since you already know the whole story!) but in case it helps anyone else. I had the autonomic testing at Stanford with TTT and QSART which confirmed POTS diagnosis and also some minor autonomic neuropathy to my feet.
But the most important part turned out to be the auto-antibody tests which they sent to Mayo Clinic in which I tested positive for two auto-antibodies. That was a surprise that I was not expecting and which I am now attempting to begin treatment with local doctors in the hope that it will improve my breathing and pulmonary weakness/restriction.
The testing did not change my autonomic meds (low dose Atenolol and Midodrine.) They did suggest to increase my Midodrine dose, which my local doctors agreed was the right way to go, and has been helpful to a minor degree (but not to the level that I can breathe to walk without the wheelchair.)
But the most important part turned out to be the auto-antibody tests which they sent to Mayo Clinic in which I tested positive for two auto-antibodies. That was a surprise that I was not expecting and which I am now attempting to begin treatment with local doctors in the hope that it will improve my breathing and pulmonary weakness/restriction.
The testing did not change my autonomic meds (low dose Atenolol and Midodrine.) They did suggest to increase my Midodrine dose, which my local doctors agreed was the right way to go, and has been helpful to a minor degree (but not to the level that I can breathe to walk without the wheelchair.)
ryan31337
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A couple of insights from my experience with OI/PMTT/TTT that might inform others:
1- Much like @PatJ, I can PMTT for 45+ minutes and whilst I can get very symptomatic with obvious changes in HR/BP, I don't fall down. On the other hand, the actual TTT had me flaking out after 8 minutes - probably sooner if I had realised I was involuntarily engaging core and legs muscles to begin with. So my point is: don't expect you'll get a negative TTT result just because you don't have syncope in PMTT, the TTT is much more aggressive.
2- For those guys in the UK, check out my other thread re. an NHS cardiologist/POTS specialist that does TTT & CPET as a matter of course: http://forums.phoenixrising.me/inde...ll-very-promising-pots-treatment-in-uk.43598/
As for treatment/prescriptions: previously mentioned POTS specialist I saw follows the usual protocol (fludrocortisone, midodrine, beta blockers, fluid, compression etc.) but in my case I'm limited to beta blockers pending further investigation because I have episodes of hypertension, which might not go well with fludrocortisone/midodrine. I have found significant improvement in orthostatic and wider ranging symptoms from low dose Bisoprolol and fluid + electrolyte loading.
1- Much like @PatJ, I can PMTT for 45+ minutes and whilst I can get very symptomatic with obvious changes in HR/BP, I don't fall down. On the other hand, the actual TTT had me flaking out after 8 minutes - probably sooner if I had realised I was involuntarily engaging core and legs muscles to begin with. So my point is: don't expect you'll get a negative TTT result just because you don't have syncope in PMTT, the TTT is much more aggressive.
2- For those guys in the UK, check out my other thread re. an NHS cardiologist/POTS specialist that does TTT & CPET as a matter of course: http://forums.phoenixrising.me/inde...ll-very-promising-pots-treatment-in-uk.43598/
As for treatment/prescriptions: previously mentioned POTS specialist I saw follows the usual protocol (fludrocortisone, midodrine, beta blockers, fluid, compression etc.) but in my case I'm limited to beta blockers pending further investigation because I have episodes of hypertension, which might not go well with fludrocortisone/midodrine. I have found significant improvement in orthostatic and wider ranging symptoms from low dose Bisoprolol and fluid + electrolyte loading.
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