Aa
curious ?
Please no one get offended by this! I was just curious and decided to post this question. What is 'severe pots' and 'mild pots' like why are some people bedridden from it and others can still function normally? I pretty much always have symptoms but I'm able to function. *ive never fainted* is it cause some people faint a lot? Does that make it 'severe' I read online a woman said she's been bedridden for 14yrs with pots. I feel so bad for anyone who has it that bad but yeah what makes it get to that point? Thanks in advance for clearing this up for me and again I'm sorry if this offended anyone but I didn't mean it in a disrespectful way. Its just almost 4am and I can't sleep so I decided to ask a question haha anyways hope everyone has a wonderful week :)
I think I had some ups and downs mentally in terms of doubting my own gut instinct about the severity of my illness in the past, based mostly upon input I was getting from doctors who seemed to doubt what I was reporting to them or the severity of what I was going through. For me, what really put that all to rest and gave me a concrete idea of the severity of my illness (and gave all the docs concrete evidence of the severity) was getting the full battery of autonomic testing done at Cleveland Clinic, plus getting the intake testing done for cardiac rehab (which also had some surprising results that were further evidence of the level of severity of my illness).
There were times when I had to remind doctors that it was important to consider not only whether certain symptoms were improving (especially the rate of my syncopes), but also to what degree I was contorting my life around to avoid triggers. It's not really equivalent to true "improvement" if you're avoiding any kind of normalcy. To put it in an extreme example, if one of us laid on 100% bed rest all day every day in a perfectly temperature-controlled room, of course faints might go down to zero—but that doesn't mean we're cured! The second that person tried to get up out of bed and resume a "normal" life, everything would go back to just as symptomatic as it was before! Sometimes doctors (and we!) need to be reminded of this to keep things in perspective.
There is a certain amount of guilt and doubt that can come with not working (even due to disability) in our culture that puts such a high value on work-ethic. It's important to remind ourselves that we can only do what the body allows, and that we're still good people just trying to make the best of a bad situation!
As for whether there's a point where recovery from POTS isn't possible, that same testing I told you about can sometimes winnow out more information about prognosis. There are certain indicators they can look for that would be more indicative of a reversible process vs. a likely irreversible process. I think it's oftentimes people like you that have been sick for a number of years that seek out the more extensive testing, because it may be able to shed more light on the underlying process that's causing your illness or at least quantify things a bit for you. It might be something you want to consider at some point if you have the means. The closest place to Miami to get that done would be Vanderbilt in Tennessee.
Best,
Heiferly.
There were times when I had to remind doctors that it was important to consider not only whether certain symptoms were improving (especially the rate of my syncopes), but also to what degree I was contorting my life around to avoid triggers. It's not really equivalent to true "improvement" if you're avoiding any kind of normalcy. To put it in an extreme example, if one of us laid on 100% bed rest all day every day in a perfectly temperature-controlled room, of course faints might go down to zero—but that doesn't mean we're cured! The second that person tried to get up out of bed and resume a "normal" life, everything would go back to just as symptomatic as it was before! Sometimes doctors (and we!) need to be reminded of this to keep things in perspective.
There is a certain amount of guilt and doubt that can come with not working (even due to disability) in our culture that puts such a high value on work-ethic. It's important to remind ourselves that we can only do what the body allows, and that we're still good people just trying to make the best of a bad situation!
As for whether there's a point where recovery from POTS isn't possible, that same testing I told you about can sometimes winnow out more information about prognosis. There are certain indicators they can look for that would be more indicative of a reversible process vs. a likely irreversible process. I think it's oftentimes people like you that have been sick for a number of years that seek out the more extensive testing, because it may be able to shed more light on the underlying process that's causing your illness or at least quantify things a bit for you. It might be something you want to consider at some point if you have the means. The closest place to Miami to get that done would be Vanderbilt in Tennessee.
Best,
Heiferly.
BTW I am 99% certain I have the hyperadrenergic variation (though not formally diagnosed yet)...
I just have to say that you guys rock! I've gotten more info from you than I have in years of doctors and personal research.
I know everyone says you can recover from POTS, but is there a point where it's just not possible? I've had it for over 10 years and it just gets slowly worse...
I too wonder about the severity and how mine compares. I'm not bedridden and I function okay when things are on my terms (i.e. I can avoid things and not do things I know will be triggers). I'm social and love fun but can only be outside when there's a pool or ocean to cool off in, or a/c nearby. I don't have a job and I feel like it's largely because I can't plan on how I'm going to feel day to day and stress is a huge trigger. Plus I live in Miami and heat intolerance (and exercise intolerance) are huge factors to me. But sometimes I feel like I'm not 'severe' enough to justify not working. Does anyone else feel like this??
I know everyone says you can recover from POTS, but is there a point where it's just not possible? I've had it for over 10 years and it just gets slowly worse...
I too wonder about the severity and how mine compares. I'm not bedridden and I function okay when things are on my terms (i.e. I can avoid things and not do things I know will be triggers). I'm social and love fun but can only be outside when there's a pool or ocean to cool off in, or a/c nearby. I don't have a job and I feel like it's largely because I can't plan on how I'm going to feel day to day and stress is a huge trigger. Plus I live in Miami and heat intolerance (and exercise intolerance) are huge factors to me. But sometimes I feel like I'm not 'severe' enough to justify not working. Does anyone else feel like this??
I "All In' on making it officially the "Pits"...Lol
Then again, everyone has "the Pits"...So they still
would not Get It!
Unless there was some kind of "Uppage" we could discuss....lol
Just being silly.....Gotta be some times when you feel bad
most of the time right?
~Tonya
You're very welcome! I'm glad it made sense. :-) You never know when I've been sitting upright for a while and it's getting to be the wee hours of the morning ... :-p
Yeah, I would definitely keep in mind that some people do recover from POTS. It's just different from person to person. Then again, we can all relate in so many ways, because we all know how isolating this can be because so few people "get it." Plus we all know how ... well, crummy ... dysauto can make you feel. It's the pits, you know? Maybe we should stop calling it POTS and start calling it PITS. Then we could all have the same diagnosis.
"Darn it, my PITS is acting up again!!"
"PITS?? What's that?"
"Please Is There Something."
"Huh?"
"Oh, you know, 'Please Is There SOMETHING that *isn't* haywire in this body of mine?!'—the PITS"
;-)
Yeah, I would definitely keep in mind that some people do recover from POTS. It's just different from person to person. Then again, we can all relate in so many ways, because we all know how isolating this can be because so few people "get it." Plus we all know how ... well, crummy ... dysauto can make you feel. It's the pits, you know? Maybe we should stop calling it POTS and start calling it PITS. Then we could all have the same diagnosis.
"Darn it, my PITS is acting up again!!"
"PITS?? What's that?"
"Please Is There Something."
"Huh?"
"Oh, you know, 'Please Is There SOMETHING that *isn't* haywire in this body of mine?!'—the PITS"
;-)
Thank you thank you thank you!! Yes, that's exactly the chart I was referring to. You know, I had seen the Low chart before I think, but having first seen it in Grubb's article, I think I just glossed it over and never attended to it closely enough to realize it was different and had an extra category!!
LOL, thanks for breaking through my brain fog and pointing that one out, I might never have known otherwise!! It takes a village to raise a dysautonomia mind!!! :-p
LOL, thanks for breaking through my brain fog and pointing that one out, I might never have known otherwise!! It takes a village to raise a dysautonomia mind!!! :-p
Everyone did a Wonderful job with explanations :)
I will add my 2 cents if you don't mind.........I personally think that everyone's AD is specific to them. Just as my multiple Sclerosis is unique to me. Not everyone will have the same sx and some sx will wax and wane...
For me my Neuro, EP and Cardiologist believe that my AD is secondary to my MS or in other words.....a part or extension of it. Hope that makes sense. For me, I have a hard time walking through a store even w/ my cane w/ out either a PreSyncope episode or an all out Syncope episode......I just never know.
It makes it so hard for me to "Plan" things. And, it is certainly a big hindrence in my life. Another thing is that I can not stand for long periods of times nor sit for extended periods of time (legs hanging) w/ out either PreSyncope or a Syncope episode arising. bummer!
So in short, I believe that your AD is specific to you. That is not to say that yours is not bad just becasue you do not pass out...becasue in my opinion any AD is just plain Yucky!
Take Care,
~Tonya
Heiferly- wow! Thanks so much for clearing that up for me:) I totally understand now. I too sometimes have severe symptoms of nausea and dizziness and can't imagine having it 24/7. I can't speak for others but for me I don't find that your fainting stories make me feel out of place. I also love how you tell your stories! And this site is also somewhere that I feel I can come and talk to you guys about anything and you'll actually understand. *i hate explaining dysautonomia to people and they look at me like I have 15heads!* lol. Speaking of explaining .. When I was first diagnosed I was talking to my sons godmother about the condition and as soon as I said "dys" she said "dysautonomia" turns out she had it for 10 years! So when you said that for some it goes away I sure do have hope! Anyways thanks again for explaining! Hope you have a great night :)
I thought that I should have included the page -
Dr Grubb's article - p. 109 Table 1
Dr Low's article - p. 354 Table 2
Dr Grubb's article - p. 109 Table 1
Dr Low's article - p. 354 Table 2
You really have the knack at explaining difficult concepts in a very clear manner and style.
Good job! :-)
Personally I do not feel excluded when you joke about fainting (I "just" do pre-syncope).
I always read your jokes/stories with a smile, as you are such a good story teller!
I wish there was no such thing as fainting with dysautomia - The life of a "dysautonomic" is already difficult without adding that to the mixture.
:-)
Good job! :-)
Personally I do not feel excluded when you joke about fainting (I "just" do pre-syncope).
I always read your jokes/stories with a smile, as you are such a good story teller!
I wish there was no such thing as fainting with dysautomia - The life of a "dysautonomic" is already difficult without adding that to the mixture.
:-)
I think this is what Heiferly was refering to when she was talking about the "severity rating scale", but she can confirm it.
As she mentioned Dr Grubb used it in his paper - The Postural Tachycardia Syndrome: A Concise Guide to Diagnosis and Management -
http://www.iranep.org/Articles/POTS%20%20JCE%202006.pdf
I prefer the one in Dr Low's article - Postural Tachycardia Syndrome (POTS) - because it has an extra grade -
http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/pdf
Hope this help :-)
As she mentioned Dr Grubb used it in his paper - The Postural Tachycardia Syndrome: A Concise Guide to Diagnosis and Management -
http://www.iranep.org/Articles/POTS%20%20JCE%202006.pdf
I prefer the one in Dr Low's article - Postural Tachycardia Syndrome (POTS) - because it has an extra grade -
http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/pdf
Hope this help :-)
POTS isn't actually a disease, it's a syndrome. It's most likely that people who fall under the diagnosis of this syndrome actually have a variety of different problems that all ultimately result in this same cluster of signs and symptoms.
This article does an excellent job of explaining the difference between a syndrome and a disease, which is rather critical to understanding the rest of what I'm going to say, so I highly recommend reading this over before you continue reading my explanation:
http://www.differencebetween.net/science/health/difference-between-syndrome-and-disease/
Alright, so ... experts in dysautonomia and POTS are starting to notice that they can sort of group together different subgroups within POTS patients that seem to have similarities within the groups. However, it gets a bit tricky, because different experts are drawing the lines between the groups in different places, giving different names to the subtypes, and setting different parameters for "diagnosing" the different subtypes. Which is to say, there isn't yet consensus among experts in the field about these subtypes. Nonetheless, there does seem to be consensus that there ARE different types of patients within the group of "POTS" patients, and that's what's really important for our discussion here.
Over time, it may come to pass that underlying disease processes will be found that explain how different subtypes of POTS patients end up with this same syndrome. One subtype has been clearly identified, but it is—so far as researchers can tell right now—EXTREMELY rare among POTS patients, so it doesn't explain many POTS cases at all. It does give an example, though, of how further research may provide answers for more POTS patients down the road. (For those curious, the example I'm referring to is the norepinephrine transporter stuff; if you've never heard of it, you can read more about it on our Further Reading health page.)
So, the reality is that, although we could get a conversation going with say 10 POTSies here in this thread, we don't really know if those 10 people actually have the same thing going on in their bodies. With the current state of medical knowledge, we can find out more about what's going on by doing the "comprehensive autonomic testing" we sometimes talk about here, because those tests give more insight than just a basic tilt, labwork, EKG, holter, echo, etc. Those who have been through that type of testing can probably tell you more about their POTS (or other form of dysauto) than those who haven't; for example, I can tell you the actual percentage of my blood that pools in a certain position (and on which of my meds). Whereas without that testing, a person might only know that they *do* have blood pooling but not *how much* or *where* ... if that makes sense. These things can definitely give insight into "severity" in a way, although I think most of us already know how severe our illness is without "proof," just from how our lives are being affected.
As for fainting, it is not a necessary condition in diagnosing POTS, and in fact the majority of POTS patients either do not faint or only faint on tilt table test but never "in real life." I don't think that fainting would be a sole measure of severity, though it certainly is a contributing factor for some. (And you'll have to excuse my "frequent fainter jokes. I hope it never seems to those who don't faint that I'm addressing an "in-club" that you're not a part of when I make these jokes. I guess it's just the type of thing where when there's something cruddy in your life, it's nice to commiserate with others who understand, and I feel like this is a safe place for me to do so. I sincerely hope that never comes off as exclusionary to anyone here who doesn't faint. Believe me, I know that dysautonomia is the pits, whether you're passing out or not.)
To give you an idea of what limits people's ability to function, it can be a multitude of things. For some people it is uncontrollable nausea/vomiting; you can't function normally in life if you're barely (or not) holding down food. Some people have extremely severe dizziness with their orthostatic intolerance to the point that they just aren't able to walk normally without holding on to walls, etc., to steady themselves; this can lead to frequent falls and may make a person wheelchair-bound; it can also be paired with headaches or nausea. Extreme fatigue can be a major issue. Heat intolerance or exercise intolerance can be so severe that a person might have pre-syncope or syncope anytime they're in temperatures over something as "reasonable" as 72 degrees or anytime they do anything as simple as sitting upright for too long or lifting their arms over their head whilst standing! Some people become bedridden because even sitting upright triggers the symptoms that for others would only be triggered by standing.
Another thing that complicates this is that even the diagnosis of POTS syndrome itself isn't very standardized. It's likely that some of the people who get diagnosed with POTS would be diagnosed with something different if they had more comprehensive testing done, or if they had testing repeated at a later date or even just interpreted by a different physician. This is probably true of IST, dysautonomia NOS, mitral valve dysauto, etc. Some of us *have* changed diagnoses either over time or from changing doctors or hospitals.
So, in summary, the answer to your question is basically that there isn't one "POTS." I think some of the conditions that lead to this syndrome just have a different prognosis than others. This would account for the fact that some people recover from POTS while others never do, and also for the vastly differing responses to treatments.
If you would like to know more about some of the different ways that POTS patients can be grouped together/sub-classified, I suggest reading the writings of Dr. Blair Grubb and Dr. Julian Stewart. You can find a good deal of material by both of them for free; google scholar provides an excellent search engine for these type of writings:
http://scholar.google.com/
There are other experts writing on these topics, but those two seem to be the most focused on defining systems of sub-classification. If you're interested in looking into other top experts on POTS, I've highlighted many of the top names in the field in this Health Page:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
I hope that helps to answer your question. It is WAY past my bedtime, so if I haven't been clear, please follow up in this thread or send me a PM, and let me know what I can clarify. There's a suggested severity rating scale by Dr. Grubb that I can probably locate for you if you can't find it by searching online (or someone else doesn't post a link to it first—hint, hint, LOL) ... let me know if you want me to dig for that.
Cheers,
-Heiferly.
This article does an excellent job of explaining the difference between a syndrome and a disease, which is rather critical to understanding the rest of what I'm going to say, so I highly recommend reading this over before you continue reading my explanation:
http://www.differencebetween.net/science/health/difference-between-syndrome-and-disease/
Alright, so ... experts in dysautonomia and POTS are starting to notice that they can sort of group together different subgroups within POTS patients that seem to have similarities within the groups. However, it gets a bit tricky, because different experts are drawing the lines between the groups in different places, giving different names to the subtypes, and setting different parameters for "diagnosing" the different subtypes. Which is to say, there isn't yet consensus among experts in the field about these subtypes. Nonetheless, there does seem to be consensus that there ARE different types of patients within the group of "POTS" patients, and that's what's really important for our discussion here.
Over time, it may come to pass that underlying disease processes will be found that explain how different subtypes of POTS patients end up with this same syndrome. One subtype has been clearly identified, but it is—so far as researchers can tell right now—EXTREMELY rare among POTS patients, so it doesn't explain many POTS cases at all. It does give an example, though, of how further research may provide answers for more POTS patients down the road. (For those curious, the example I'm referring to is the norepinephrine transporter stuff; if you've never heard of it, you can read more about it on our Further Reading health page.)
So, the reality is that, although we could get a conversation going with say 10 POTSies here in this thread, we don't really know if those 10 people actually have the same thing going on in their bodies. With the current state of medical knowledge, we can find out more about what's going on by doing the "comprehensive autonomic testing" we sometimes talk about here, because those tests give more insight than just a basic tilt, labwork, EKG, holter, echo, etc. Those who have been through that type of testing can probably tell you more about their POTS (or other form of dysauto) than those who haven't; for example, I can tell you the actual percentage of my blood that pools in a certain position (and on which of my meds). Whereas without that testing, a person might only know that they *do* have blood pooling but not *how much* or *where* ... if that makes sense. These things can definitely give insight into "severity" in a way, although I think most of us already know how severe our illness is without "proof," just from how our lives are being affected.
As for fainting, it is not a necessary condition in diagnosing POTS, and in fact the majority of POTS patients either do not faint or only faint on tilt table test but never "in real life." I don't think that fainting would be a sole measure of severity, though it certainly is a contributing factor for some. (And you'll have to excuse my "frequent fainter jokes. I hope it never seems to those who don't faint that I'm addressing an "in-club" that you're not a part of when I make these jokes. I guess it's just the type of thing where when there's something cruddy in your life, it's nice to commiserate with others who understand, and I feel like this is a safe place for me to do so. I sincerely hope that never comes off as exclusionary to anyone here who doesn't faint. Believe me, I know that dysautonomia is the pits, whether you're passing out or not.)
To give you an idea of what limits people's ability to function, it can be a multitude of things. For some people it is uncontrollable nausea/vomiting; you can't function normally in life if you're barely (or not) holding down food. Some people have extremely severe dizziness with their orthostatic intolerance to the point that they just aren't able to walk normally without holding on to walls, etc., to steady themselves; this can lead to frequent falls and may make a person wheelchair-bound; it can also be paired with headaches or nausea. Extreme fatigue can be a major issue. Heat intolerance or exercise intolerance can be so severe that a person might have pre-syncope or syncope anytime they're in temperatures over something as "reasonable" as 72 degrees or anytime they do anything as simple as sitting upright for too long or lifting their arms over their head whilst standing! Some people become bedridden because even sitting upright triggers the symptoms that for others would only be triggered by standing.
Another thing that complicates this is that even the diagnosis of POTS syndrome itself isn't very standardized. It's likely that some of the people who get diagnosed with POTS would be diagnosed with something different if they had more comprehensive testing done, or if they had testing repeated at a later date or even just interpreted by a different physician. This is probably true of IST, dysautonomia NOS, mitral valve dysauto, etc. Some of us *have* changed diagnoses either over time or from changing doctors or hospitals.
So, in summary, the answer to your question is basically that there isn't one "POTS." I think some of the conditions that lead to this syndrome just have a different prognosis than others. This would account for the fact that some people recover from POTS while others never do, and also for the vastly differing responses to treatments.
If you would like to know more about some of the different ways that POTS patients can be grouped together/sub-classified, I suggest reading the writings of Dr. Blair Grubb and Dr. Julian Stewart. You can find a good deal of material by both of them for free; google scholar provides an excellent search engine for these type of writings:
http://scholar.google.com/
There are other experts writing on these topics, but those two seem to be the most focused on defining systems of sub-classification. If you're interested in looking into other top experts on POTS, I've highlighted many of the top names in the field in this Health Page:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
I hope that helps to answer your question. It is WAY past my bedtime, so if I haven't been clear, please follow up in this thread or send me a PM, and let me know what I can clarify. There's a suggested severity rating scale by Dr. Grubb that I can probably locate for you if you can't find it by searching online (or someone else doesn't post a link to it first—hint, hint, LOL) ... let me know if you want me to dig for that.
Cheers,
-Heiferly.
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