Wednesday, February 8, 2012

Decoding Hyperadrenergic POTS & How to Maintain a Functioning Lifestyle

***I am trying to find out what website this came from so I can link to it, it's circulating on Facebook right now, if you know please contact me.  I love this breakdown of what hyperPOTS patients go through (I'm in the process of nailing down this diagnosis).  ENJOY! 
My interpretation of the hyper POTS state.
Decoding Hyperadrenergic POTS & How to Maintain a Functioning Lifestyle.

by Kimberly ResilientSwan Swanson on Saturday, February 4, 2012 at 1:05pm ·


Decoding for Chronic Conditions in General

What do I mean by decoding? Decoding is a term that I use to describe the process of learning about your condition/body, developing and then adhering to a long term treatment plan. Let me more fully explain this process in general and then apply it to the Hyperadrenergic POTS patient. The first step to decoding a particular chronic health condition is to begin listening to your body. People who are healthy never listen to their bodies, because they never had to before. Everything functioned as it should, so what’s there to pay attention to? You may be thinking, “What does a person need to listen for?” When a person begins to notice a particular symptom or groups of symptoms they need to become an investigator by making some observations about their condition. When do their symptoms begin? What triggers them? What makes them better? What makes them worse?

The second step is go make an appointment with a medical professional to discuss these findings. Of course we all know what the arduous process of getting a diagnosis is like. It can take months or many times years to finally receive the right diagnosis. Often times during the diagnostic process, treatments will begin. This can be a very long and difficult road to travel down. Many times leading to drug reactions, ineffective medications, strenuous physical therapy that does more damage than good, endless doctor appointments, exposure to x-rays/MRI’’s/CAT Scans/PET Scans/Bone Density Scans/etc, IV’s/transfusions/bloodwork/etc, surgery and so much more. Our bodies go through war. The process is a necessary evil. The more information we can gather about our bodies, the better we will be able to understand them. Patients will endure many unpleasant tests, try different treatments, wait a long time for an appointment; and their spirit will remain strong. What makes this process hard is when they encounter uncompassionate medical professionals. Doctors, nurse practitioners, and physician assistants who look at their patients as if they were dollar signs or just a number (apposed to a real hurting person). When a patient is not given the time they need with their doctor, is not listened to by their doctor, is not taken seriously &/or tells that patient there’s nothing wrong with them – this is what crushes the spirit of a patient. There are superb doctors out there, but too many times the patient needs to sort through all the thorns to get the roses.

Once a patient finds the right treatment plan (medications, a particular therapy, etc); they have broken the disease code and now know how to manage their condition. If they do this and that; their health be relatively stable. If they do this or that; they will be in big trouble and their health will decline. The patient discovered the do’s and don’t of their condition and live by those “rules”. Now these rules can change over time a little bit, but remain fairly fixed.

Every person with a chronic condition goes through this process. Decoding can be applied to many diseases/conditions like: diabetes, arthritis, spinal problems, digestive issues, migraines, neuropathy, etc.

Decoding for Hyperadrenergic POTS Patients

After reading the above information one might think that was a long, tedious, frustrating journey patients need to take to stabilize their health. I would agree with that statement. It’s not for the faint of heart, but it is necessary to undergo if that person wants a life. The decoding process for patients who live with Hyperadrenergic Postural Tachycardia Syndrome is hundred times more difficult. Let me explain more about Hyperadrenergic POTS first and then explain why I believe these patients may possibly never find a “set code” to follow to control their condition. (Please read the tab entitled, “Types of POTS” before continuing, so that you are informed and will better understand the rest of the article – thank you)

As you have hopefully just read, people with Hyper POTS make too much norepinephrine (adrenaline) and they are missing either one or two enzymes that regulate the re-uptake process during neuron to neuron communication causing the excess norepinephrine to spill over into the blood stream where it travels to all the different body systems causing symptoms. I would like to talk about the overall nature of this syndrome and how it behaves. The excess norepinephrine travels to all the body systems disrupting lines of communication. For example: the message from the brain to the heart becomes scrambled and the heart is told to beat faster. Every body system is affected: thermoregularity, cardiovascular, digestive, brain function: cognitive ability/emotions, respiratory, urinary, sensory & motor control. Everything that your body does that’s automatically (meaning you don’t have to tell it to do); can be affected by the norepinephrine causing symptoms. There are about 39 different symptoms a patient can experience everyday (see symptom list for more details).

What we do know about this condition is that good &/or bad stress causes these symptoms to become worse. Did you realize that being “happy” can trigger a surge of norepinephrine and cause a patient symptoms? It’s true. Any change within the body’s moment of homeostasis could cause an influx of symptoms. This is one of the hardest, most challenging areas for the Hyper POTS patient; they are never able to achieve a lasting homeostasis within their bodies. Hyper POTS patients are very sensitive to their environment and to the stress around them. Any and every thing can affect their health and they have very little control to stop it from happening. It’s not mental; it’s physiological. Within a given day, most people would agree good and bad things occur throughout the day and most people have very little trouble with going with the flow. For example: Someone wakes up late. They rush to get out the door. Speed on their way to work. Get to work on time. The boss gives them a new project they’re in charge of. Their best friend calls for a long chat after work. Needs to cook dinner still. The dog needs a bath. Their spouse needs to talk to them about finances. Time for bed and then start another day. Now there are good, bad and normal everyday stressors in this example. This type of day would completely incapacitate someone with Hyper POTS. They would not be able to get out of bed for at least 3 days from the multiple adrenaline spikes throughout the day. One may think adrenaline would give a person energy; it actually does just the opposite. When the body is constantly on high alert 24/7; the body can’t sustain that intensity and it very quickly becomes exhausted. So the tiniest activity or mental stress can have devastating effects on a person’s health. Hyperadrenergic’s bodies are very reactive.

Change is the only permanent quality about Hyper POTS. There is no consistency to this syndrome. A patient may experiences an increase in symptoms (or one particular symptom) with or without being able to identity a cause (In my opinion, I believe there is always a trigger; but we are unable to discover it - which can be quite maddening). This is the first reason why decoding Hyperadrenergic POTS is almost impossible. How can a patient prevent a symptom from occurring if they can not uncover the trigger/cause? It’s not simply a matter of making more observations or studying their conditions more. This syndrome throws a lot of curve balls. It really is impossible to know the causes for certain epinephrine spikes. If someone unexpectedly honks their horn behind a Hyper POTS patient – their adrenaline will surge and it’s easy to see that cause and effect; but many times it’s not that easy. So the first strike against Hyper POTS patients for them being able to decode their syndrome is that they can not always know how to prevent norepinephrine surges from occurring. They appear to just happen at times.

The second strike against Hyper POTS patients is that a treatment for one particular symptom will work one day, but may not work in a week. A patient is CONSTANTLY in the “learn & observe” stage; because their bodies are always changing. Their bodies may tolerate a medication for a symptom for a week, a month, a year, etc – but then for no apparent reason their body changes and that treatment is no longer viable; and a new treatment must be found. This is constantly occurring for many symptoms these patients are experiencing. Let’s say, the patient has been able to find a way to get to sleep and stay asleep. The treatment works well for 3 months and then their body spontaneously changes and that treatment no longer works. The patient must find a completely new way of managing their sleep. A Hyperadrenergic is always plagued with constantly trying to understand their body, uncovering triggers and trying to come up with new ways to manage their symptoms.

The third strike against Hyper POTS patients is each POTS patient in general is so very different from the next. No matter if the patient has Partial Dysautonomia (PD), Combination (PD & Hyper) or Hyperadrenergic POTS; each patient is truly unique. To be fair to physicians, this makes their job so difficult to treat and help each patient. Many doctors try to just list off a series of things a patient should do and gives that speech to each patient that they see. One treatment plan for all will never work. A doctor needs to examine their patient, listen to their patient and study their lab/test results – then form a specialized plan tailored for that one patient. Very few doctors do this though, because it takes a lot of time, thought and patience to develop such a treatment. This specialized plan needs to be constantly modified too, because the patient’s body is always undergoing change.

Exercise is another very complex and difficult task for a Hyper POTS patient. A specific type of exercise may work for their body and they may be able to do it for a certain period of time. Then for unknown reasons, their bodies change again and they no longer tolerate that exercise. They then must find another type of exercise that doesn't increase their adrenaline production, but rather increase the re-uptake process of the adrenaline. Not an easy task.

I hope you are beginning to see how difficult life is living with Hyperadrenergic POTS. Patients can learn about triggers, medications, therapies and the norepinephrine re-uptake process; but unlike other conditions. Hyperadrenergic POTS can not be decoded at this time. Medical world does not yet know many of it’s mysterious to be able to help these patients solve these treatment problems. The medical world is still “in the dark” with this condition.

How to Maintain a Functional Lifestyle

As I have just discussed, Hyperadrenergic POTS can not be decoded at this time. So until then, the only thing the patient can do is to constantly participate in “the observe, learn and modified cycle”. So instead of discovering one semi-permanent code to treat Hyperadrenergic POTS; the patient must be continually be discovering “temporarily” (meaning anything only last a few days to a week to years) ways to control their symptoms. This is why so many people with this syndrome can not work, take care of their children without help, go to school, go out with friends, etc! Whenever someone mentions the word “functional” around a POTS patient; an instant sneer and a chuckle leaks out of their mouth. What does functional mean?? Functioning to one patient may mean: I am able to get out of my bed, shower and make myself a meal. Functioning may mean to someone else: I can drive and work part-time, but as soon as I get home….I collapse (unable to do ANYTHING) until I have to work again. For each of these examples: these patients work very hard at “Continual Decoding” process in order to do those things. The more “things” (work, school, family, etc) a POTS patient can do…..the more “continual decoding” and discipline they must undergo. Continual decoding is maddening. Here’s a silly analogy to better explain why. Let’s say you’re a mom. You just were cleaning up the living room. You went in the kitchen to make dinner and when you came back the living room was in shambles again. Then you’re told you can not use the vacuum, duster or broom to clean up room like last time. You must find a different way to clean the living room because those tools no longer work. Now apply this principle to the 39 daily symptoms a Hyper POTS patient can have. These patients are always thinking about the cause and effect of their actions and ways to control their symptoms. Most patients can not keep up such a demanding way of life over a long period of time. It’s too much to juggle managing this syndrome and the responsibilities of school, work, etc. The stress of this combination is hard to bare; although it is possible to do. A patient needs good doctors to help maintain their level of functioning, needs supportive/understanding friends and family around them, a goal to actively pursue and a determined spirit. Over time every person’s health waxes and wanes; and a Hyper POTS patient is no different. Our goal is to have more healthy days then the unhealthy ones; but we truly earn those “good times”.

If you know someone who is Hyperadrenergic, I hope you now see them in a different light. Sometimes POTS patients are not always easy to get along with, but there’s a reason for that and I hope you understand them a little better now. Simply listening to them and having an understanding spirit will greatly be of help to them.

If you are Hyperadrenergic; I hope this helps you understand your own body and the struggle to manage it a little better now. I know some POTS patients may disagree with the ways I have described things. Everyone’s experiences are different and unique. This article is written from my own experiences and the experiences I’ve seen in my friends with Hyperadrenergic POTS. Please feel free to respond to this article.

11 comments:

  1. I'm a HyperPOTS person and have to agree with the writer of this post. Life is so unpredictable with this dysfunction. We can take a med to lower our NE levels, but that causes other issues (fatigue, dizziness, edema) and let the medicine wear off and have the NE surges and anxiety that this flight or fight hormone causes and feelings of your heart beating out of your chest - the tiredness that goes along with it (like constantly running on a tread mill - although, probably de-conditioned because exercise itself triggers an NE release and then our already high heart rates and usually high blood pressures - go even higher.) It's a constant struggle to just deal with the wild swings our body does - not to mention what it does to our thought process. It's no wonder doctors tell us that we are the hardest subset type to treat. Then along with HyperPOTS many in this subset have MCAS and EDS - with possible autoimmune issues thrown into the mix. Now, you've really got a complicated body to figure out. And, like this poster stated - what will work one day - will not work the next - so you're constantly having to figure out what to do to have any quality of life. I do wish that doctors could figure this all out and narrow down more concrete treatments. Until then, we have to do a good bit of experimenting on ourselves - either with RX meds (because nothing is really formulated for HyperPOTS - everthing is an experiment) or with alternative "natural" supplements. It's great that we can put our heads together and figure out what things are helping and what things are not. Every little bit of information we can collect and compile will get us closer to an answer. Hoping for brighter days for us HyperPOTS people.

    Issie

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  2. Hello, i found this and it brought me to tears and also back out, ive been pretty much hiding for months now.MOre from ways i was treated once finally diagnosed by those i wuld have expected more from. One thinks that along woth a medical diploma comes, empthay, a natural curosity and beliefe in ones patient, its not a given anymore than that comes with ones own gene pool. Isoltaion and Ignorance is as defeating and debilitating as this condtion. I ask of those reading these wonderful, articles to spread the word that simplest acts of kndness, belief and empathy can do incredible things for those of us whom have to deal with frustrations hard to imagine in our every day life. Blessings anad gentle hugs to all my dysta systas and brothers....i have missed you so but always in my prayers., shalom

    Sue,3 months prior to 60 bday FINALLY diagnosed by the Big Guns hyperpots primamry form, enjoy all that can bring lol, my case, FMS, CFS, MPS,GP and decades of being told it was all in my head.. . Thank you Lord for two Local cardiac drs who saw thru that and didnt stop searaching for me... Now work on those others, Amen.

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  3. As a hyperadrenergic POTS patient, I love this! Thank you for sharing it.

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  4. Hi how do you get tested for Hyper POTS? Thanx

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  5. You will need to find an immunologist /Allergy specialist

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  6. I'm am currently undiagnosed but these are my symptoms exactly. It's so hard to maintain my life. I also have a blog about my constant struggle.

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  7. Thank you... That was the best explanation of what I have dealt with much of my life. It brought tears to my eyes.

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  8. I am having trouble navigating the page. Where is the symptoms list for hyperadrenergic POTS? I am so interested, thank you.

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  9. I thought you explained wonderfully! Thank you.
    God Bless,
    Fellow hPOTSie
    Audra

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  10. Did you find the website this came from and can you link to it if you did? I cannot find the symptoms list for hyperPOTS either? I am interested as well , thanks!

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