This month is Dysautonomia Month. I’m hoping while sharing my story I can spread awareness to invisible illnesses and to help my family and friends in understanding what I have, and why I may sometimes be the way I am. I want to try and make a positive impact on not only my own life by being more open, but my husbands, my family, my friends and all of you who are reading this.
Very few people in my life are aware that very shortly after our wedding I was admitted into the hospital. I had a few bizarre episodes happen that made me question my state of health leading up to it.
I later found out that I have a condition called Postural Orthostatic Tachycardia Syndrome, which often goes by POTS. So your probably thinking, what is POTS? It is a syndrome that is within the Autonomic Nervous System (ANS) branch. ANS is the part of your body that is in control of anything automatic. Examples of what the ANS helps to regulate and control are your pupils and saliva, gallbladder, bladder, digestion, breathing, kidney function, temperature control, heart rate, blood pressure, and more. People that are diagnosed with POTS often have many symptoms relating to the condition. And POTS affects every individual differently since the ANS controls so many aspects of the body. But something all people with POTS have in common is that their heart beats 30 bpm faster upon rising from being in a laying position for more than 10 minutes. When that happens blood pressure can often drop which can cause syncope. But surprisingly only about 40% of POTS patients faint. We will get more into depth about that in a future post.
Dysautonomia is a umbrella term that is used to describe any medical condition that causes a malfunction of the Autonomic Nervous System. Which is why I am sharing my story about Postural Orthostatic Tachycardia Syndrome for the month of Dysautonomia Awareness.
I have a slew of symptoms that trouble me. If your curious to know, I’ll list them here. Hopefully I didn’t forget anything. But I’m sure you’ll get the idea.
- Vibrating/ pins and needles in my hands and feet, that often radiates up my legs and travels throughout my whole body.
- Jaw tightness as if I’m clenching when I am not.
- Tremors that are usually only caused by episodes.
- Trouble to catch my breath.
- Extreme muscle weakness and shaking usually after over exertion.
- Hands and feet are either frozen like frostbite or hot like they are burning. I often experience cold during day and hot during the night.
- Veins in my calves often “vibrate” similar to a rubber band snapping.
- Brain fog, I often have times throughout the day where I feel slow to react, poor memory and sometimes I use the wrong words when I have others intended to be said.
- Chest pain, I often feel tightness, bruising, feels like a pulled muscle, pressure/weight and a stabbing sensation.
- Increase in heart rate without influencing it- episodes can be very high, or a drop which can feel like a last breath (tachycardia vs. bradycardia).
- Typically I get wheezing during the chest pain, but sometimes have wheezing without.
- Swelling and pooling in the lower extremities and blood sometimes pools in my hands and arms.
- Increase in sweating.
- Hot flashes.
- Purple feet, sometimes painful to walk on them.
- Achy body, sore muscles and joints.
- Chronic fatigue, exhaustion and burnout quite easily.
- Went from never burping to burping all the time.
- Sensitivity to light, often driving or sitting in the car, overhead lights, screens etc.
- Feeling like I’m drunk or tipsy.
- Disoriented, often trouble finding my words during this state, hard to focus, and often having visual disturbances.
- For any visual disturbances it can range from quick spurts or longer and using looks like the person in front of me is jolting or shaking (not migraine related).
- Trouble to regulate my body temperature.
- Lack of blood in my toes.
- Sensory overload (not associated with migraines).
- Migraines and headaches.
- Numbness, mostly in my hands and feet, but has happened to other areas of my body. Mostly limbs.
- Extreme weakness.
- Legs give out randomly, minor not enough to fall over usually. I just come across as clumsy.
- Excessive joint cracking.
- Back pain that I’m assuming is coat hanger, but also some lower that can get so bad it makes me want to vomit.
- Insomnia and sleep paralysis.
To clarify, I often do live with these symptoms everyday. Certain ones may be persistent and linger all day, for hours or be short spurts. Some days are great for me, and I’m less symptomatic then usual, somedays I’m living through a burnout and some days I may wake up feeling okay but have multiple episodes throughout my day. It’s unpredictable.
The Mayo Clinic recognized and named the condition only about fifteen years ago. And with the limited amount of time and patients who have had official diagnosis that makes it difficult to get a wide range of studies. POTS is a difficult condition for people to understand because of this, but also because it covers so much function for the body that in return causes so many symptoms.
My condition didn’t get recognized until I was seen by a cardiologist. Until then it seemed like a mystery. Growing up I had symptoms which were mild in comparison to how they are today but often due to my age I felt I wasn’t taken seriously. Over the years I slowly became less of an advocate for myself due to those feelings, but also because a lot of these symptoms were my normal. It may sound a bit bizarre but I really didn’t think a lot of my symptoms were… symptoms. How was I suppose to know when to question something if I felt this way? If otherwise, it either didn’t pass through my mind, or I would put the blame on something else.
Quite honestly it has been a long road for me to learn and comprehend myself. I am still learning and I may always be learning about it. But I’ve realized that is necessary. It’s important for me to be my own advocate given it went un-diagnosed for (what I assume) so long and I’ve learnt that it’s surprisingly not heavily taught within the medical field. It’s a shame that something so important like the Autonomic Nervous System is often overlooked when it controls so many important functions for your body.
I’ve realized over time that my chronic illness can’t be hidden, it affects my everyday life and it’s become evident that hiding my illness hasn’t done me any good. It only worsens my episodes trying to push through pain. But I’ve been working on being more open about it and to spread awareness that chronic illness and disabilities aren’t always visible. And even if someone with a disability or illness has a good day, that doesn’t mean their condition is any less real. We often push through pain and suffering silently to not disturb the people surrounding us or bring attention to us.
I hope that over time I can help anyone who is wanting to learn more about ANS and Dysautonomia, and to spread awareness to it and any other invisible illenesses. I feel I owe it to the people I share love with to teach them how and why I am who I am. I often worry I come across as uninterested in a conversation, like I’m avoiding someone or that I’m impolite. The truth is I’m often trying to battle my symptoms and can’t control when that will be.
Thank you for reading, and if you have any questions please don’t hesitate to ask. Being that the month of October is Dysautonomia Awareness I’ll be sharing a few upcoming posts talking more about what the Autonomic Nervous System, Dysautonomia and POTS is. I’ll also be sharing how I treat my condition my diagnosis story and some tips and resources I’ve learnt during my journey.