POTS Syndrome

POTS syndrome is also known as postural orthostatic tachycardia. It is one of a group of disorders which have orthostatic tolerance (OI) as their primary symptom. Orthostatic intolerance describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position, fainting. [https://www.inlifehealthcare.com]

Symptoms Include:
Fainting
Heart palpitations
Shaking & sweating
Weakness & fatigue
Dizziness or light-headedness
Headaches
Poor sleep
Chest pain
Feeling sick
Shortness of breath

3 Types of POTS

Neuropathic POTS
Hyperadrenergic POTS
Secondary POTS
Neuropathic POTS
This is essentially nerve disease. Here, the sympathetic nerve supply to lower limbs does not function properly and so there is pooling of the blood in the lower extremities rather than being returned back up to the heart. This leads to dizziness on standing and an increase in heart rate. This is the most common form of POTS.

Hyperadrenergic POTS
This is a case of high adrenaline. These patients have high levels of norepinephrine in their blood. This leads to increased heart-rate and blood pressure. While neuropathic POTS has lower blood pressure and higher heart rate when standing, hyperadrenergic POTS typically has both increased blood pressure and heart rate when standing.

Secondary POTS
This refers to POTS syndrome that is a result of another under-lying condition that leads to damage of the nerves that usually control the re-distribution of blood. These under-lying conditions can include diabetes, lupus, alcoholism and chemo. [https://myheart.net/pots-syndrome/types/]

Some Spoonies Worst Symptoms and Some Advice:

Stephanie shares: “Right now, I’m struggling most with temperature regulation and sweating. I’m always getting hot and cold at the same time! And I get so fatigued from standing it’s crazy!”

Adara shares: “I can’t stay standing for very long due to dizziness, drop in bp, heart rate and lips going blue. Hands and feet go red and purple and I get brain fog and fatigue. I use a wheel chair now. (I was once a badminton player) I was diagnosed after ten years- took a print our of POTs information to my doctor.”

Adara gives some advice to POTs patients: “Drink lots of water and salt (always carry emergency salty snacks, the way diabetics carry sweet stuff). Wear compression socks, stay cool, use a shower stool/seat and if you want to try physiotherapy/medication, then ask loudly and don’t be given no for an answer.”

A Brief Tale of Kristie’s POTS Experience:
I “spoke” to Kristie Johnson, of Migraine Mantras (Migraine Mantras), via Facebook messenger. She’s been dealing with POTS for eight years now, before doctor’s finally began looking into it and was finally diagnosed two years ago with it.
When I spoke to her about her most aggravating symptom’s she told me this:

“I have the most trouble with blood pressure drops. I get up slower, turn slower, anything I can do to avoid passing out. Gatorade and body armor are the only thing helping me right now. I know when I’m about to pass out, 90% of the time (ringing ears, dizzy, blurred vision or blacked out vision) and can sit or lay down before it happens. Sometimes I can’t catch myself. I’ve fallen down the stairs, fallen into things, washer, a dresser, etc.

When talking about her symptoms, length of time she’s been struggling with her symptoms and her recent diagnostics, she told me:

“Local docs won’t treat me, and I’m actually being sent to a hospital a few hours away to see an autonomic specialist for treatment. It’s 3-ish hours away in a Medical Center in Norwalk and I’m on disability so money isn’t something I have a lot of.”

I also asked her which POTS she was struggling with.

“Reading into it I mostly fir into the Secondary POTS category because I have under lying issues like Lupus and nerve damage.”

Sharing Stories Brings Awareness

Like so many others, Kristie is struggling with POTS and it is my hope, that through the sharing of these and so many other stories, we will bring more awareness to POTS and other chronic illness, to those who do not know or do not understand enough about them. We have begun to learn, the impact our voices have. I encourage everyone to share their story with people everywhere, because you don’t know whose life you will touch. When we are silent, we often feel we are alone. When talk and share these stories, we are suddenly catapulted into a community who can listen and support us.

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The Big (not so) Beautiful Lie

When you are first diagnosed with chronic illness/pain, you are very quickly acquainted with dread and fear which are inextricably linked, in addition to overwhelming anxiety. Chronic illness and pain are something which are uniquely foreign to that which we are accustom to. These are not the flu or a cold, or a twisted ankle from tripping on a dog toy. This is something long term (hence the chronic), for which there is no easy remedy or medicine to cure it. Once you’ve been able to process the diagnosis and conquer the dread, you become more optimistic, regardless if you are naturally pessimistic. I think there is a natural, human desire to want to look at the most positive outcome when you are sick and especially, if you are in pain.

Research mode, typically follows this period of distress and positivity, and when I say research, I mean research. Whatever the ailment maybe you are delving into books, diving down the rabbit hole of Google and looking for anything you can find that might help you battle whatever it is you are fighting. You search for groups on Face Book where you can meet people who are going through the same thing, in hopes of not only finding some comradery, but maybe some clue in how to battle this thing and win. You become a person, previously with no knowledge on the subject- maybe not even knowing it was a disease at all, to someone who might as well have an honorary PhD. However, after all that fervor for learning, what happens next is very anticlimactic; nothing. You may find some things that alleviate some of the symptoms; you may walk away with a few new friends who become an extension of your support system, but you find little in the way that makes a dent in how you feel from day to day. (This can vary from person-to-person.)

Weeks go by; months go by; and sadly, for many of us, years go by with little change. What began as a moderately optimistic journey toward recovery becomes a portrait of self-criticism. What I mean is, doubt creeps into our psyche. Did I do something to cause this? Should I have changed my diet? Become Vegan? Should I have switched all my commercial cleaning agents to essential oils? Stopped drinking soda? Drank more green tea? The questions posed in this self-interrogation are endless and the questioning can continue quite a while, covering your entire childhood through your adulthood. It is this idea that if you were just able to do something different, either through your diet or what you are exposing yourself to externally, that you could get better, or better yet, cure yourself. This is the big, not so beautiful lie. This is what many of us zone in on, trying to assign blame to something, not being able to accept it might be the luck of the draw and that sometimes we simply don’t have control over what makes us ill.

Part of the fall-out from this is when strangers or even extended family members issue us advice on how to get better. There is an inward clenching and mental eye roll as we try to maintain our manners. It’s not their fault that they don’t understand, right? I wish I could be more forgiving when someone advises me on the fine attributes of turmeric, but the fact is, if I haven’t already tried it, it’s likely I know about it, courtesy of my intense research. This isn’t an effort to bash those that mean well, rather, it’s an effort to help them understand and by changing the way they word something, come across less assuming and more genuinely interested to help. Example: “You should be taking turmeric. It will help you feel a lot better. I read…” Instead, “In case you haven’t heard, I read turmeric is really good for inflammation…” or “Have you heard about turmeric? I learned it might help bring down inflammation…”
Lastly, if you are struggling with chronic illness/pain, remember it’s not your fault. Stop telling yourself these big, not so beautiful, lies and be kinder to yourself. You are already going through a lot, and self-blame will not help you.

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When Calling the Doctor Feels Like You’re an Inconvenience

Scenario: It’s been roughly three weeks since you’ve seen your doctor. He/She prescribed new meds and you think you aren’t tolerating them well. The scenario could be anything you like, but how you question yourself remains the same just as your reluctance to call the doc up.

 

In my scenario I use the word think as a descriptor in how you are tolerating the medicine because in the grand scheme of the rainbow of symptoms, we, as chronic illness patients can sometimes feel, it is not always easy to determine the why of an onset of new symptoms. It is also difficult for me, to decide whether or not to call the doc and share with them the symptom, out of fear that it is all in my head or not really worth the docs time, and that it will go away in a couple of days. If you are like me there is a certain amount of agonizing before calling the doctor. You have a mental checklist that you have to mark off, nearly all the boxes, before it is deemed legitimate enough to call the doctor. Alright, maybe it’s more like guidelines, but ultimately, it’s a way that I feel my concern is serious enough to call the doctor.

But what is serious? What is serious to you and me are probably different, and what is serious to a doctor is definitely different. I’ve also seen enough doctors that I feel I can make the statement that, male and female doctors can see things differently. This isn’t a blanket statement, just an observation from the many doctors I’ve seen for myself and on behalf of my children. This confusion, as a result of differing bodies and differing doctors can make navigating what to do when something new crops up, very difficult. So difficult in fact, that I spend quite a deal of time stewing in my own anxiety, working myself up and probably making it worse. I wish all doctors made it easier for chronic illness and chronic pain patients to come to them when they had concerns. For example, my rheumatologist gave me her email. This is a great source of relief to me because I can bypass the staff and nurses, trying to explain what is going on and just  leave a message for her. Then, she can email me back advising me if I should come in for a visit, or something else I can do to ease the problem. This may not be something every doctor can do for every patient, but there should be some way bridge this difficulty. Life is already so difficult trying to manage chronic illness/pain. The majority of us come with comorbities that include a staggering number of symptoms that aren’t always there but fluctuate. It’s also pretty common to experience new symptoms that weren’t there before. For instance, I have developed an allergy to adhesive. Never had an issue before and I’ve had a lot of experience with them. It’s annoying.

I wish there was a way to improve the doctor/patient relationship so that the patient doesn’t feel like they are bothering the doctor and the doctor doesn’t feel like the patient is calling all the time. I do understand the need for a doctor to have some off time where they aren’t on call every day and every hour. I also think it is important that the patient feels they can come to their doctor with issues and not feel like they are troubling them. I don’t mind waiting until the end of business hours when they are not busy caring for other patients to get a call back. I don’t even mind if they just leave me a message. But I’ve had doctors not return my call for days, after which I had to take myself to the clinic, where I ended up needing additional meds. I’m not saying I know how to fix this issue, but I think it would be great to open up a discourse with the input of patients, to see how it could be fixed.

 

Chronically Seeking

I began the day writing about one thing and after a doctor appointment, decided to take a different route and write about something else. Something that I think many of my Spoonie friends out there understand. I am sitting here feeling frustrated and angry and like I am not being taken seriously. I feel like I have little in the way of choices and I wonder how many of you feel the same way I do. I am talking about our doctors.

Don’t get me wrong, I am not on a doctor witch hunt. I have and have had, excellent doctors. In fact, if it wasn’t for a few doctors I have had, I might not be here writing about this. So this is not a hate filled rant against doctors; this is, instead, something inspired by frustration and feeling very much like I am caught between a rock and a hard place.

This doctor that I speak of has not been terrible, either. In fact, for the most part, has been very good and very helpful. However, I feel that we haven’t been on the same page for a long time and in recent months, I’ve felt our paths diverging even more and also feeling as though they, too, are feeling the frustration of a patient with no clear “fix.” There is also a sense that they are focusing on me in parts and not as a whole and the problem with this view, in my opinion, is that these parts cannot be fixed because they are part and parcel to a much broader issue- Chronic illness, which, the majority of doctors do not know enough about. Instead, they look at parts. I can’t tell you how many surgeries I have had that were needless, because no one was seeing the broader issue. While I do have a doctor treating me for the broader issue, I still have other doctors who are integral to my treatment who don’t always have the same opinion.

This is my question and why I am writing this: if you don’t agree, how do you go about getting a second opinion, or looking for another doctor completely? For me, the first place I look is always my insurance. Are they on my insurance? Then, I typically look at where the doctor is located, because I am relying (most days) on my two eldest to drive me. It can be complicated with kids who are working and going to school to find an appointment, but I manage. The next thing I will look at is if there is any kind of feedback on Yelp or other doctor rating sites, because they help in deciding whether or not this might be the right doc for me. I understand that not all the reviews are honest or fair, but I try to come to my own conclusion. After considering all these things, I am not left with many choices. Using this as an example, only three. Two of which I have already seen and have proven to be as horrible as their reviews, and then my doctor. So, what is a patient left to do? Grin and bear it? That seems to be the motto among chronic patients everywhere because I think besides being limited in who we can see, there is also an overwhelming feeling of exhaustion because we have had to see so many doctors. We’ve had to weed out the good from the bad, sometimes after extensive testing, only to have to start from the beginning again. It’s tiring and emotionally exhausting.

What to do about it? I was sitting here brainstorming what I could do and then something funny struck me. Want ads. They should have want-ads or maybe a website catering to the chronically ill who are seeking physicians. I can write a great one. It would go something like this:

I am a 44-year-old, chronic pain and chronic illness patient. I am looking for a kind, empathetic physician who understands my plight and who can think outside the box. Moreover, I am looking for someone who isn’t afraid that I know more about my illnesses than they do, who will integrate a holistic approach, meaning looking at me as a whole person and not just parts that might be damaged. An added bonus would be someone who isn’t offended that I want to be a part of my care and not just simply follow directions based on their advice because I understand my body and how I am feeling better than anyone.

I think that is a brilliant ad, if I do say so myself, but I am not sure there would be any takers. Still, if anyone is considering an app that pairs up doctors to their patients and vice-versa, I’m all in. Until then, I remain, chronically seeking.

 

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