Jump to content

Anyone Feel Like There Are Classification Problems With Autonomic Dysfunction?


Recommended Posts

I really think there needs to be more research and education in this area. To, me, it seems as though there are some serious classification issues with pots. There are people on here with pacemakers, ankylosing spondylitis, EDS, PAF, NCS, MVP, autonomic neuropathy, mast cell activation and immune issues including severe allergies, post pregnancy, teenagers, hyperpots, history of drug overdose, traumatic brain injury, etc. As far a patients, causes, and appropriate medication regimens, we are apples and oranges but we are all called one thing, pots. i blame this on the diagnostic criteria. A TTT only shows that your body behaves abnormally on standing and hardly reveals anything about cause or the appropriate medication for each patient. I feel that there needs to be more inclusive premises for a pots diagnosis that should look something like this:

EKG->Basic Metabolic Panel-> complete blood count-> cardiac enzymes-> caridac panel including troponin-> cortisol-> Testosterone-> Estradiol-> Thryroid tests(not just tsh)-> glucose tolerance test/fasting glucose-> Western Blot for lyme-> Eppstein Barr panel-> Vitamin D, Magnesium->echocardiogram->holter monitor-> event monitor-> ttt->brain mri-> EEG-> Plasma and Urine catecholamines-->urine metanephrine-> full allergy panel-> tyrptase levels-> mast cell tests-> Vasoactive Intestinal Peptide, angiotensin II levels--> QSART test--> Electromyography-->

Anyone know of other tests that should be on here?

Link to comment
Share on other sites

A lot of people have these problems, but many don't. I think the tests are not needed for all, but need to be determined based upon symptoms. It would be nice, tho, to have acknowledgement from drs that some of these conditions are related and to have drs test for them rather than having us figure it out for ourselves. It is ridiculous, for example, when someone learns several years after being diagnosed with POTS that they have EDS. Dr should check for that right away.

Edited by yogini
Link to comment
Share on other sites

I agree with you all. POTS is just a symptom. Docs should definitely be trained on how to recognize it and begin ruling out the most common etiologies.

Link to comment
Share on other sites

While researching my illness, I have learned several things which may help sort out the classification issue. The subspecialty of autonomic neurology is relatively new, and so the classification of autonomic disorders has evolved (from what I can tell at least three times) in the past 15 years, as the research drives new theories or identification of new disorders. The thought leaders then have to come together, come to consensus, and agree how to alter the existing classification system. Some classification models break down dysautonomia as POTS, Autonomic Neuroapthy, or variations of autonomic failure (related to many areas). Other classification models are much more involved due to the complexities to having impaired regulation and counter regulation to a host of involuntary functions. Then there are numerous terms to describe the same thing, making it even more confusing.

Since the autonomic nervous system is responsible for maintaining the bodies homeostasis by balancing the sympathetic and parasympathetic systems (torquing up verses relaxing) each of the bodies involuntary functions, there are unlimited variables to what can be messed up. Our body chemistry is broken. I call it "Metabolic Fubar". Many of the labels we are given describe the severity of our broken nervous systems, ie how bad we are screwed up (POTS, small fiber neuropathy, large fiber neuroapthy, etc) but not WHY.

The trick is to find out which pathways are fractured and why. To understand why, the best tool we have is to figure out our triggers and unravel our symptoms, which can point to a potential cause. I have sudomotor and cardiovascular autonomic neuropathy involving both the sympathetic and parasympathetic fibers. This translates to BP issues and sweating/temperature issues. Something is triggering me to be in sympathetic overdrive.

While conventional treatment of cardiovascular (syncope, OI, OH) involvement is to increase blood volume through volume expansion via hydration, salt and other non pharm tricks, the object is to get to get blood back up to the brain to alleviate symptoms. Meds may or may not work depending on what other pathways are broken or the impact of other systems on the nervous system. The autonomic nervous system intersects with the neuroendocrine and immune systems, as our symptoms often include issues with hormones and inflammation, adding even more variables. Mast cell disorders, Lyme's, viruses, autoimmune disorders, genetic disorders, tumors, chemicals, medications, diabetes, etc can all disrupt the normal pathways that allow our bodies to function.

I hope that chronic illness will one day be recognized and categorized differently, which will lead to better diagnosis and treatments that focus on the causes/WHY and not only the symptoms.

Link to comment
Share on other sites

While conventional treatment of cardiovascular (syncope, OI, OH) involvement is to increase blood volume through volume expansion via hydration, salt and other non pharm tricks, the object is to get to get blood back up to the brain to alleviate symptoms. Meds may or may not work depending on what other pathways are broken or the impact of other systems on the nervous system.

The autonomic nervous system intersects with the neuroendocrine and immune systems, as our symptoms often include issues with hormones and inflammation, adding even more variables. Mast cell disorders, Lyme's, viruses, autoimmune disorders, genetic disorders, tumors, chemicals, medications, diabetes, etc can all disrupt the normal pathways that allow our bodies to function.

I hope that chronic illness will one day be recognized and categorized differently, which will lead to better diagnosis and treatments that focus on the causes/WHY and not only the symptoms.

Excellent post. I'd like to add toxic foods and chemicals to the list of causes. Imho, sadly, like me/cfs, pots is a wastebasket diagnosis. Tc .. D

Link to comment
Share on other sites

Dr. Grubb scratches the surface. His clinic at least tries to subdivide a little, but we really need to pool our own resources until they start taking Dysautonomia seriously. We need to have polls for where all members weigh in and say what type of Dyautonomia they have, and then divide those groups into what types of meds and treatments they've been given or tried on their own and the level of success.That info is on here but would take forever to compile since it's all over the place. It it was combined it would be a powerful tool for everyone.. Not as perfect as clinical research but a really good start..

Link to comment
Share on other sites

Currently working on my workups (autonomic testing later this month) to figure out what the causal factors are in my case.

Also, re: QSART, University of Washington Medical Center in Seattle does offer it as well; I'll be getting it on 2/23 along with various other things.

Link to comment
Share on other sites

I agree with Rama...The problem is that we are all pretty much trying to classify ourselves, because they don't know the answer to the "whys" yet, and we are asking for our own testing, trying to figure it out for ourselves, and not completely understanding what we are doing either :unsure: ...but it's all good, because we are our best advocates, and hopefully with all of us brainstorming, we can help one another in the process :) That's what it's all about; helping one another, and if nothing else, encouraging one another along the way!! There are a lot of intelligent people on this site, and we could actually come up with some answers, the more we converse with one another...Don't give up!!

Link to comment
Share on other sites

How are patients going to lead the reclassification issues? Can we test our hypothesis? Do we have access to medical equipment that might help us delineate patients? Are we all as up-to-date with the current research and unpublished data? Are we going to be open to possibilities that dont equate to our preconceived opinions about these illnesses or on past doctor comments?

I think the answer is probably no to all of these. The best thing you can do is actually read what gets published.

Link to comment
Share on other sites

we are asking for our own testing, trying to figure it out for ourselves, and not completely understanding what we are doing either :unsure: ...

LOL - I had to laugh at this. I am totally doing this! I was on the phone with two labs today trying to figure something out about a biopsy I had done and want re-done a different way. They're like who are you - the patient?? But they helped me figure it out and I was able to take that info to the Dr. who will now get me the proper testing. We do have to advocate for ourselves, but this is tough - I really DONT know what I'm doing!

Link to comment
Share on other sites

I am researching all the time, but my knowledge is limited, and even though the internet is a wealth of information, medically speaking, (I'm a retired RN), like Rama said, we really can't scientifically do the research needed for a hypothesis that we might have, and everyone does have preconceived opinions. It has helped me to respect physicians all the more, because I was trying to diagnose myself for years, and to be honest when I looked up dysautonomia, I didn't think I could have it, because of my high blood pressure, but I was wrong, so it is more complicated than we think!! I thought I had MS for years, because of all the neurological symptoms I was experiencing, or MG, because of my droopy eyelids, but after doing tests for these, there was no answer. My dad had a cerebral aneurysm, so they kept doing MRI's on me, too, because of stroke like symptoms. This is harder than we think...

I have to admit, though, that I have asked for my doctor to do certain testing on me to rule things out, and they respect my opinion on things, knowing I have some knowledge, and am always trying to figure this out with them. So I do have an advantage in that way :)

Link to comment
Share on other sites

I disagree with you rama. There is more to life and medicine than numbers and letters. I think that having discourse over possibilities evokes a creative approach to the situation. Furthermore, doctors can sit and measure norepinephrine, NO, and angiotensin all day but, as we have seen, these quantitative data reveal little information about the cause in a manner that leads to prevention or a cure. Quantitative data is a static approach to a dynamic problem. As per classification, one would not treat a patient with lung cancer the same way that they would treat a patient with asthma. In the pots mindset, it would be: well they both have breathing problems. Tachycardia is vague and indiscriminate. The reality is that there clearly are mechanisms within each of us that are causing this that are being overlooked. Otherwise, there would be a cure by now. By offering a critique of medical behaviors, it brings to light areas to be improved upon.

Link to comment
Share on other sites

I see where your coming from. The views of patients might very well suggest directions that doctors havent thought of, but often they might be based more on subjective experience rather than an understanding of physiology. And sure I agree that the general treatment that POTS patients receive is fairly conservative and rarely takes into account the more recent research.

The reality is that there clearly are mechanisms within each of us that are causing this that are being overlooked

There is research being published in the last few years that seems to be clearly showing what the mechanims are in POTS and NCS. The docs involved arent fantastically funded and have to do their best which unfortunately takes time. And understanding the mechanisms doesnt automatically result in a cure - it hasnt for parkinsons, ankylosing spondylitis and many other illnesses. But it might translate to better treatments ofcourse and I think the research is close to getting those down. But ofcourse, there needs to be consensus as well which in medicine can take a while.

But if someone does work out POTS on these forums and it translates to a cure I will mow their lawns for life!

Link to comment
Share on other sites

Great post. Unfortunately one thing I have learnt over the years is when you have specific symptoms that are unique and personal to your Dysautonomia then no doctor wants to bother investigating further. I've written to so many specialists and research scientist when I first developed POTS and I was overheating with severe fevers everyday and experiencing very odd symptoms like spasms and hyperthermia from sexual arousal and a whole list of other weird symptoms but none of the doctors were interested in investigating further to figure out why my body was reacting in such an unusual way.

I thought having such unique symptoms unlike anyone else in the world would gain the interest of the scientific community but it did not. All the reserach is going into common illnesses. No one seems to care in wasting time or funds on people with rare and bizarre conditions.

Link to comment
Share on other sites

I think that it's not a matter of patients leading the research, it's a matter of patients being the research. There are research medical PHD's trained better than anyone on how to research issues causing symptoms in illnesses. They are make strides in that there is even now two journals that I know of on Dysautonomia that I will post.

What I see that is still missing is an international conference that brings these specialists together with tons of patients and we are missing any kind of pharmacological company testing coming from all of this great research. Major autonomic clinics like Mayo and Vandy would have to lead this effort. Since I haven't to been to any myself I can't say why pharma trials have been slow to start. Very small studies like Dr. Grubb has published have been leading the way in treatment options, but with an estimate of 500,000 - 1,000,000 patients with Dysautonomia in America alone, I would think that we should have had large studies easily organized by now. Maybe there just isn't enough awareness out there, which could be an issue..

As a patient I think our experiences do count for a lot and when we have positive diagnosis and we have been to clinics who have classified us, then our experience account even more. I've read 100's of clinical studies and a lot of the time the researching PHD quotes the patient about their experiences. So while patient experiences can't replace controlled clinic studies it has a lot of value especially from a very large group of patients.

I for one wish that I didn't have to do any research and when I walked into my specialist office they could tell me exactly what type of POTS I had and the possibilities that some medicines will work better than others because of such and such. Why should I have to learn more about medicines from a forum website than my own doctor, but sadly that's been the case for me..

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...