Living with Autonomic Dysfunction

What My Life Is Like With Autonomic Dysfunction

September 1, 2017
Autonomic dysfunction. Those words probably don’t mean much to you. Three years ago they were gibberish to me. Chances are unless you’re a medical professional or a dysautonomia patient, you probably haven’t given much thought to your autonomic nervous system… so let’s lay down the basics.
Your autonomic nervous system (ANS) controls your body’s automatic functions – all the little things you don’t even have to consciously think about to keep your body functioning. It regulates things like your heart rate, blood pressure, body temperature, digestion, and much more. Inevitably, when this system fails to work properly, you’re going to end up with some serious consequences. Because your ANS controls so many different functions within your body, it can malfunction in many different ways. This is why dysautonomia is a blanket term for a variety of unique conditions associated with autonomic dysfunction.
What is life like for me with autonomic dysfunction? I’ll try to explain.
In the four times I’ve either nearly or fully passed out, I’ve found that there are two ways it tends to happen: either gradually or immediately. When it happens slowly, I can catch it in time and prevent it, but it feels a lot worse because I am fully aware of everything going wrong in my body. When it happens quickly, I have a matter of seconds to recognize it before I lose consciousness, but I’m out before the worst of the symptoms begin.
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I imagine this has something to do with how quickly my blood pressure drops. The first scenario is what happened during my tilt test recently, and it reminded me just how terrible that gradual drop is. Your legs feel heavy and tender, your arms cold and tingly. The churning in your head increases as your stomach starts to follow suit. Your chest gets tight and your heart races. Breathing gets a little more difficult. Your body is overwhelmed by a cold sweat that makes you shiver and your hearing starts to get muffled and distant. As your vision starts to go, they finally lay you back down. Then comes the head rush as your blood floods back into your upper body. Your head pounds with pain, but with each minute your symptoms slowly dissipate. You’re shaky and dizzy, but it feels a million times better than what you were feeling five minutes ago. Still, you know you’ll be useless for the rest of the day. It’s time for water, french fries, and Netflix. Note: this is still a relatively new area for me and many dysautonomia patients have passed out much more frequently.

When I woke up this morning I felt tired and sore as if I had spent yesterday incredibly active. But all I did yesterday was make dinner and write. I look at my phone and see that it’s nearly 11 a.m. I’m usually up by 8, but I’ve been sleeping a lot lately due to my current flare.
There’s a dull ache in my chest and my mind feels fuzzy. I lay in bed for about half an hour, allowing my body to fully wake up. If I get up too soon, it’ll throw off the rest of my day. It’s the perfect time for kitty snuggles.
When I finally do stand up, I take it slow. But even then my vision goes a little dark as my body adjusts to being vertical. It’s back within a few seconds and I make my way to the restroom. Looking down at my feet, I recognize the blood pooling in my legs that makes them appear darker than usual. I get my breakfast, fill up my bottle of water, and sit down on the couch, already winded from my short excursion. I listen to a sermon online as I eat my food and then dive into editor position.

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What is Dysautonomia?

By Paige Wyant
Staff
Dysautonomia

1.1k 20
Dysautonomia includes a range of conditions – such as postural orthostatic tachycardia syndrome (POTS) or neurocardiogenic syncope – in which the autonomic nervous system (ANS) does not function properly. This can affect major organs and bodily systems, as the ANS is responsible for activities such as regulating internal temperature, breathing patterns, blood pressure, heart rate, digestion, excretion and pupil dilation. The dysfunctioning of these systems can cause a number of symptoms that may have serious effects on your health if not properly managed.
While some symptoms of dysautonomia are clearly visible, such as blood pooling in your legs and feet, many others, such as a racing heart, lightheadedness or an upset stomach aren’t always apparent. To better understand the experiences of those with the condition, we asked our community to share photos that show what dysautonomia really looks like. Everyone may experience different symptoms and forms of the condition, but the following photos show that all are warriors.
Here’s what the community shared with us:
1. “I have to nap daily. Sometimes all I do is wake up, take my medicine and already need to nap. Even napping is exhausting! But having the purrfect nap buddy makes it a bit better!”
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2. “I have dysautonomia and was diagnosed with neurocardiogenic syncope, autoimmune disease, irritable bowel syndrome (IBS) and more. To help with my bradycardia I have a pacemaker. This picture was taken when I had my first change of pacemaker, after 10 years of being diagnosed. I’m smiling because this is how I fight back. I always try to have the best attitude towards my condition.”

MIGHTY PARTNER RESOURCES
What are dysautonomias?
What we do
Other resources
via Dysautonomia Advocacy Foundation

3. “This was at college orientation tonight (I’m the one on the right). I was having a great time, but when I started dancing I immediately felt my symptoms. My legs got tired and started hurting halfway through a song, and I was too tired to keep jumping. I couldn’t follow the instructions in another song (‘get low’) because I probably would have fallen over. I spent the rest of the night wishing I didn’t have dysautonomia.”
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4. “My 9-year-old diagnosed with dysautonomia, cyclic vomiting syndrome, anxiety and PANDAS. He has trouble controlling his body temperature and has low blood pressure. He is an amazing athlete, especially for all he deals with!”

5. “This day I was completely exhausted and my skin flushing was making me feel very hot. My blood pressure was super high, my heart rate was at 130 sitting and I was miserable.”

6. “I actually have an album in my phone titled ‘doctor.’ I try to take photos and videos of my symptoms, as they don’t always occur at my appointments. I also have a list I continually update so I don’t forget to mention things!”

7. “Weekly IV fluids… one to two liters along with daily Flecianide, fludrocortisone, metoprolol and amolodipine to treat my severe POTS. Cardiac rehab as well.”

8. “This is a photo of blood pooling in my legs because of POTS. It is especially prevalent on my right side because I have problems with muscle weakness on that side due to a traumatic brain injury. This photo was taken after an especially taxing day that exasperated my symptoms. I was experiencing dizziness, lightheadedness, tachycardia and other pre-syncope symptoms. In addition, I was extremely nauseous and had been dry heaving for a few hours prior to this.”

9. “Tilt table results.”

10. “This was the day I received my Master’s degree. My spirit is feeling accomplished and grateful and amazed; my mind is focused on pretense, on pretending I’m not afraid I won’t make it through the ceremony without vomiting, fainting or collapsing. The best part about this day was, of course, receiving my counseling degree; the worst part was wondering whether or not my body was going to allow me to use it.”

11. “I took this picture by accident, but when I realized it was exactly what my world looks like when my dysautonomia is flaring, I kept it.”

12. “This is what happens when I stand up too fast or too long. I have both Ehlers-Danlos syndrome (EDS) and dysautonomia so it takes me a while to get back up when I fall/pass out. I had accomplished school and three choir rehearsals the day this was taken. I was very overdone, but my sweet doggie was making sure I was OK.”

13. “This is me now.”

14. “This is me when a friend wanted to use me as a model for her photography. I was dizzy and lightheaded because it was way too hot outside for my POTS to handle. After this picture I spent 15 minutes laying on the concrete trying to get my heart rate to go down.”

15. “This is what the end of my day looks like and what freedom really looks like. Because I have more freedom attached to an IV pump then I ever did before.”

16. “[This was] last week after accessing my port for the very first time on my own! It will make it so much easier to get fluids this way, plus I can get them more often.”

17. “Lyme-induced POTS. Trying not to pass out when going downstairs. A daily occurrence – multiple times a day. Here I am getting tunnel vision and the “whump-whump” staticky sound in my ears. Time to grab the rail and get my head down.”

18. “I have a few diagnoses, like most of us do, and most of us have dealt with their fair share of testing as well. This was last month. I had to have an EKG to check my heart.”

19. “I can walk, but not long distances. [I can’t] stand up for long without getting dizzy, drop in blood pressure, pre-syncope/syncope, etc… This was on my way to be a volunteer at a summer camp and had a few hours of waiting for the other volunteers. When I am traveling by airplanes I order assistance and borrow a wheelchair at the airports. Borrowing a wheelchair makes travel and shopping easier to overcome. Yes, it is exhausting to use a wheelchair as well, but I don’t have the same big risk of falling because of syncope or seizure and I still use less energy sitting in the chair than walking. It is a solution to the bad days I need to get out or am going somewhere to travel, but am I able to go without I will.”

20. “I was in the middle of nowhere at camp and I got one of the dysautonomic events. I started vomiting. This is what I ate all day – a hummus sandwich and electrolyte water – while everyone else enjoyed juice and normal water.”

21. “For me, life with dysautonomia means running IV fluids every day. Even before a birthday party, just so I can stay upright!”

22. “I have POTS. This was taken right after I had a bad syncopal episode in a grocery store. As you can see, my feet are bright red because of the blood pooling in my legs. I had to lay on the grocery store floor until it passed. This happens often enough that I now get one to two liters of IV fluid daily to increase my blood volume, and now use a wheelchair for shopping and community mobility so I don’t pass out and hit my head!”

23. “After pacemaker surgery for gastroparesis and POTS.”

24. “One of the worst POTS episodes I caught – well, before I was diagnosed. This was my norm for most of my life. My heart rate could spike as high as 150 – just standing. I felt like I was going to die when this picture was taken. I could barely stand, barely breathe. I was shaking all over and weak. I had to fight every second to get my diagnosis. I’m doing better now, but it’s only barely controlled by several medications (I’m one for whom water and electrolytes and salt do nothing, whee). I also have esophageal and intestinal dysmotility and possibly mild gastroparesis, which my GI says is probably caused by my dysautonomia.”

25. “This is a photo of what people see almost every day. I work so hard to try and look OK. Whether it’s with makeup or other things to distract from the fact that I really feel completely awful. My friend took this picture and while I look perfectly fine, I could feel my heart beating in my chest. My legs were turning purple, I was dizzy and nauseous. All I wanted to do was lie down and take a nap. But if I were to do that every time I felt this way I would never leave bed. So I put on this face. This is the face of dysautonomia.”

26. “I felt the lowest in this picture. I had been in the hospital for about a week and it had taken a toll on me. I used music to help soothe me and my mom sat there and sang with me. Dysautonomia can be extremely difficult to live with at times but I just keep reminding myself that there are better days ahead!”

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Most Toxic Sunscreens!

Most Toxic Sunscreens
Well at Walgreens Sport Continuous Spray Sunscreen, SPF 30, 50, and 90
Well at Walgreens Sheer Dry-Touch Sunscreen Lotion, SPF 55 and 100
Vichy Capital Soleil Soft Sheer Sunscreen Lotion, SPF 60
up & up Sport Sunscreen Lotion, SPF 30 and 50
up & up Sport Sunscreen Continuous Spray, SPF 15 and 30
up & up Kids’ Sunscreen Sun Stick, SPF 55
up & up Sport Continuous Spray Sunscreen, SPF 30
up & up Kids’ Sunscreen Continuous Spray, SPF 50
Trader Joe’s Nourish Spray Sunscreen, SPF 50+
RoC Retinol Correxion Deep Wrinkle Daily Moisturizer, SPF 30
Rite Aid Wet Skin Kids Continuous Spray Sunscreen, SPF 70
Rite Aid Ultimate Sheer Dry-Touch Sunscreen, SPF 55, 70, and 85
Rite Aid Tugaboos Baby Continuous Spray Sunscreen, SPF 50
Rite Aid Renewal Wet Skin Continuous Spray Sunscreen, SPF 30 and 70
Rite Aid Renewal Sport Continuous Spray Sunscreen, SPF 30 and 50
Rite Aid Baby Sunscreen Lotion, SPF 60, plus other Rite Aid sunscreen products
Philosophy miracle worker anti-aging lotion, SPF 50
Neutrogena Wet Skin Spray Sunscreen, SPF 30, 50, and 85+
Palmer’s Cocoa Butter Formula Daily Facial Lotion, SPF 15
Neutrogena Ultra Sheer Dry-Touch Sunscreen, SPF 55, 70, 85
L’Oreal Invisible Protect Dry Oil Spray Sunscreen, SPF 50+
Hawaiian Tropic Silk Hydration Clear Mist Spray Sunscreen, SPF 15 and 30
Coppertone Water Babies Sunscreen Lotion, SPF 70+
CVS Age Renewal Firming & Hydrating Moisturizer, SPF 30
Check out EWG’s 2014 Guide to Sunscreens to see a complete list of the safest sunscreens (the lower the number rating, the better) and the most toxic sunscreens (the higher the rating, the more toxic).

Safer Sunscreen Tips: Protect Yourself From Toxic or Ineffective Sunscreen
Avoid spray sunscreen. These popular, aerosolized sunscreens may seem convenient, but they may pose serious inhalation risks.
Don’t trust sky-high SPF claims. SPF stands for “sun protection factor,” referring only to UVB radiation protection. Since UVA rays penetrate deep into the skin, increasing your risk of wrinkles and skin cancer, super-high SPF claims could leave you with a false sense of protection. EWG recommends that consumers avoid products labeled with anything higher than SPF 50 and reapply sunscreen often, regardless of SPF.
Avoid oxybenzone. This chemical messes with your hormones—and not in a good way. It could also trigger allergic reactions. One study even linked oxybenzone to endometriosis in older women!
Don’t rock retinyl palmitate. This anti-aging cream ingredient may react with the sun and speed the development of skin tumors and lesions, according to government studies.
Don’t do double duty. Avoid combined sunscreen/bug repellent products. Since you don’t need to apply bug repellent as often as sunscreen, you could be slathering yourself in unsafe levels of bug-repelling chemicals.
Avoid towelettes and powders. Some online retailers still stock and sell towelette and powder sunscreens despite FDA sunscreen rules barring the sale of these products. Powders increase your risk of lung damage through inhalation, too.
Say “no” to tanning oils. EWG says even if the oils contain sun protection, it’s often inadequate or toxic.

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Why and How to be Mentally Healthy

Why and How to be Mentally Healthy
Society puts an incredible amount of focus on physical health. Losing weight and building muscle are goals the world obsesses over. This obsession causes individuals to forget about something just as important – the brain. Being in perfect physical health, however, will only get a person so far if their brain is in shambles. If you are someone who truly cares about your health, it is vital to know both the benefits of being mentally healthy and how to accomplish it.
Avoid Drugs and/or Seek Rehab
In a perfect world, the key to being mentally healthy is avoiding any type of medically unsupervised drug use. It, however, doesn’t take a rocket scientist to figure out the world is far from perfect. Truthfully, people get involved in drug use for many different reasons.
If you are someone who wasn’t fortunate enough to avoid drugs completely, there’s nothing to be ashamed of. Just reach out to an alcohol, drug, or marijuana rehab center to get the assistance you need.
Manage Your Stress
Ideally, a person in pristine mental health will avoid stress completely. However, avoiding stress is not realistic. Instead, a person must learn how to face stress head on. Basically, you must find ways to cope with and manage your stress. When your stress levels are through the roof, you do whatever calms you down.
For starters, participate in relaxing activities. This could be listening to music, writing, coloring, or even taking a nap. You could also opt for an activity you find enjoyable. Watching a movie, playing a video game, or reading a book are all great options.
The key to managing your stress is not sacrificing your mental health via your coping methods. Namely, this means don’t turn to drug use  or stress eating to calm your nerves or try to eat away your emotions.

Eat the Right Foods
Again, the brain isn’t the first thing that comes to mind when a person is picking and choosing what they want to have for dinner. This is unfortunate because there are tons of food that can improve your mental health.
Connect with Friends and Family
Strong relationships can make it easier to cope with the daily stresses of life. Having a relationship with friends and/or family members will help you feel loved and included. These strong relationships provide you with a purpose. It is easy to get lost in your own head and experience unpleasant emotions when you are alone. Avoid disconnecting from people.
Ask for Help
While it seems like a redundant piece of advice to give, it is common for people to try to do everything by themselves. There is nothing wrong with needing help. Whether you just need someone to talk to or you need the physical assistance of someone to complete a task, just ask for help. Struggling and suffering on your own isn’t good for your mentality.
When a person isn’t of seamless mental health, their brain becomes cloudy or dry. Suddenly, this person will feel as though they are living in a fog and good decisions will be harder and harder to make. A happy and healthy brain, on the other hand, will result in a happy and healthy life. To continue reading this article click on Healthlisted.

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How old is your soul?

If souls are eternal, how is it possible for them to be “young,” “mature,” or “old”? The answer is that souls can’t literally be given an age, however, figuratively we all possess different levels of soulful maturity. Soulful maturity is basically our ability to connect with the essence of who we are beyond our socially conditioned identities, and while some of us possess a very strong bond with the truth of “us,” others of us are still working on connecting with our essential nature. This is where the terms Infant Soul, Baby Soul, Young Soul, Mature Soul and Old Soul stem from: all represent different levels and points of our soul’s journey to wholeness.

To find out how old your soul is click on lonerwolf on left side of the column and take your test!!!!

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Supporting people with invisible illnesses