Living With Overstimulation and Hypersensitivity

When I was little I could only wear my socks inside out because I couldn’t stand the feeling of the seam rubbing on my toes. We tried buying “seamless” socks, but let me warn you, they still have seams, they’re just really, really thin. I would fuss and cry and refuse to put on tennis shoes because the feeling of that seam rubbing on my foot caused me extreme discomfort, if not true pain. Back then, my family thought I was just a crazy kid who hated socks and couldn’t have any bumps in her hair for a ponytail, but none of us had a clue what was really going on.

You may wonder why the heck it matters that I hated socks as a child, but I’m getting to that. “Overstimulation” is a term that most people don’t often think of in reference to adults, but its something that greatly affects me in my every day life. No, I don’t have ADHD and I don’t have autism, but my Dysautonomia functions in the same area of the brain as ADHD and Autism and can affect the same nerves in my frontal lobes that would be affected if I did have ADHD or Autism.

Because I have both Dysautonomia (dysfunction of the autonomic nervous system) AND chronic migraines, plus both chronic joint pain and fibromyalgia, my sensitivities have just kept growing and growing. It started with socks and small sounds that I just could not get over—people chewing loudly, my window fan making the smallest clicking or rattling noises that no one else could pick out, or birds waking me up by cheeping outside of my window, giving me headaches and starting my day out in a funk on beautiful spring mornings. Now, I hear everything, and it echoes in my head making not only my migraine worse, but causing me pain throughout my whole body.

I’ve had headaches for as long as I can remember; in 5th grade I was complaining to my parents and my doctors about painful, daily headaches, but since I was around the time of hitting puberty they figured my hormones were starting to change and it was due to that. It wouldn’t be until about 5 years later that I saw my first neurologist and finally started making some progress towards figuring out exactly why sounds and lights and touch could be so hard for me.

I was diagnosed with Dysautonomia/POTS and chronic migraines. They called me their guinea pig because I was their youngest patient to date and they just couldn’t figure out all of the pieces, but my neurologist helped get me on a good migraine medication that helped minimize symptoms for awhile, until I started building up tolerances and developing new symptoms. It only took about a year to be sent to new specialists at a different hospital, and eventually higher level specialists in a new state, and then even higher level doctors in a specialty clinic over 7 hours away.

Six years later and my migraines are still not managed and my sensitivities to sound, noise, touch, and even smell are more sensitive than ever. When you hear someone say, “migraines are more than just a headache,” it’s no joke. Just my family members eating cereal or soup and having spoons hitting bowls repeatedly is enough to send me into full body pain. Having the TV on and conversations going overwhelms me so much that I end up fully zoning out and having no clue what the person is saying to me. I can’t be in the same room with my own family when there are certain noises or activities and that is extremely upsetting both for me and for them. It’s taken time for them to realize it’s a real, explained symptom for me and it is still hard for me to grip without feeling a lot of guilt and sadness.

Today, my nerve pain and sensitivity keeps me from wearing jewelry on my wrists or neck. On bad days, I can’t stand to have my hair touching my neck or the cord of my heating pad rubbing against my leg in bed. On worse days, I don’t want to be touched or even touch my own skin because my body feels like one giant bruise. I can’t put lotion on, get dressed, take a shower, or do any daily self-care tasks without being in pain on these days.

I carry earplugs and have a noise machine to try to block out the sounds that cause me distress or pain. I hate these sensitivities because they steal so many moments, so many memories from me. They cause my family anxiety and stress and they cause me frustration, pain, guilt.

Overstimulation and hypersensitivity aren’t anything to take lightly or shrug off if someone opens up to you about their struggles with either/both, try to listen and understand and if there’s something you can do to help make that person comfortable, try to do it. Changing something small like how loud your music is or whether you eat with a metal spoon or a plastic spoon doesn’t matter in the big picture, but being able to share that extra moment with a loved one or a friend because of that small effort can mean so much more than you may realize.

A Day with Dysautonomia

I’ve been dealing with dysautonomia since I was a teenager, really even longer before my diagnosis in high school. It started out with shortness of breath and heart palpitations before moving into full on syncopy and fainting spells and eventually complete autonomic dysfunction. Today, although my dysautonomia is in many ways managed better than it has been before, it still affects my body and routine every day.

Although my fainting spells have been minimized by doing twice-daily saline infusions, if you look deeper you find that my dysautonomia is still very much present. I struggle daily with common symptoms like dizziness, accelerated heart rate, and fatigue, but I also have symptoms that are less talked about.

I struggle with temperature regulation, being unable to stay warm if I go anywhere with a temp under 65-70 degrees, even if I’m bundled up and only there for a couple of minutes; this includes grocery stores, cars, outdoors, and my own house during the winter. Something as simple as changing my clothes can send my body temperature drops as low as 91 degrees F – hypothermia is 95 and below. I joke about my “hibernation” during winter, but it’s partially true, being that cold and unable to warm up is not a fun –or safe– feeling. On the other hand, if I’m fatigued or talk too much (no joke), I run low grade fevers and have to put myself in a “time out” to let my body rest and recover.

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I also struggle from severe adrenaline rushes. My blood work shows high norepinephrine and dopamine levels which you would expect from someone who is overly excited or even scared, maybe from sky diving or being in a high speed car chase? Well, I get them from standing up or over exerting myself. When your body has to work extremely hard just to keep you on your feet, it sometimes goes into overdrive. These adrenaline rushes either leave me hyper during the day or up all night, but either way, I’m exhausted and weak when they’re over.

My dysautonomia has also contributed to my digestive tract failure and my chronic pain. Although I have other conditions as well, these are all comorbid and interact with one another making it harder to treat. I’m on 24/7 nausea medication and daily pain medication as well. I struggle with daily migraines and occipital neuralgia. I rely on tube feeds and IV fluids to keep me nourished, hydrated, and able to stand up without passing out.

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Although there are many other symptoms I struggle with, these are just a couple that are currently having a big impact on my life.

Dysautonomia is an umbrella term for a multitude of conditions and needs more research and awareness. There are way too many people suffering from this condition who deserve treatments and a cure, but we have none.

To each of you reading this, thank you. Please continue to read, share, and educate others on these conditions so that one year we can write about the cure.

Brain Fog

So I haven’t posted a blog in a couple of weeks and although I’m sure in this busy season of life most of you haven’t even noticed, I decided to give you an idea as to why it is that I haven’t been posting.

The last few weeks – or really the last couple of months—have been really challenging for me health wise. Winter has always been my worst season, especially for my gastroparesis. I’ve been spending anywhere from 16-22 hours in bed every day, my pain and nausea levels have been through the roof, and I’ve been having migraines literally every day.

Aside from being in a major flare up of all of my physical symptoms, I’ve been struggling big time with my brain fog; that’s what I want to talk about today. When I tell people I have this elusive symptom called “brain fog,” they often just blow it off and think I simply mean I’m tired, lazy, or forgetful. But brain fog is a real symptom of my condition(s) and it has seriously affected my life since getting sick.

The medical term for brain fog is cognitive impairment. The most common symptom, and the one I struggle with the most, is difficulty with word finding. Essentially, I know exactly what I want to say but I have no idea what words to use to say it. I forget simple words used to form sentences, names of objects, places, and even names of people. I often have trouble forming sentences and finishing thoughts. This makes holding a conversation — or writing a blog! — very difficult at times.

Other symptoms of brain fog include short-term memory loss, decreased concentration, and fatigue especially after mental exertion. For example, when I am reading a book I often find that I have no idea what the page I just read said. Although I’m sure that many people find they have this problem, its not because I was day dreaming or because I don’t like my book, its just because my fatigue and my fuzzy brain can’t keep up. I also couldn’t tell you the name of the book I’m reading right now if my life depended on it nor could I tell you the names of my favorite movies, books, or often even my favorite actors or authors.

These symptoms make school extremely difficult for me and for many other patients who live with POTS and other conditions that cause brain fog. Imagine trying to write an essay (hopefully you can find words in your fuzzy head) on a book you can hardly even remember reading. It again also makes conversations hard because when people ask me simple questions like, “Who’s your favorite actor?” or “What movies have you watched recently?” I often have no good answer for them when I’m put on the spot.

A few of the other symptoms of brain fog include difficulty multitasking, blurred vision, headaches, and difficulty working with numbers. Not everyone has all of the symptoms and there are others I didn’t mention, but now you have a general idea! Research states that up to 96% of patients with my form of Dysautonomia have brain fog.

My brain fog gets worse on days when I’m more fatigued or have over exerted myself (which doesn’t take much!). It is also made worse by certain medications that have side effects like drowsiness or lightheadedness. When I’m tired and having a conversation with someone who doesn’t know about my condition and how it affects my ability to find words, I can get extremely flustered and overwhelmed.

I used to be extremely articulate and I had a great vocabulary so it can be weird for me to talk to someone who knew me before I got sick because they often aren’t aware of how my condition affects that part of my brain. Brain fog is an extremely frustrating symptom of Dysautonomia and it is so much more debilitating than one might think. I know my brain function is in there somewhere, but it often hides and doesn’t work as well as I’d like it to.

I’ve learned to cope with brain fog, but it has taught me that you can be robbed of any part of yourself at any point in life, whether it be your vocabulary, your ability to form sentences, your memory, your ability to consume food, your ability to walk, your ability to see, etc. There are a million things we take for granted each day, and the only time you will truly start to look back on it is when you lose one of these things.

I know I say it all the time, but I continue to encourage you to take nothing for granted and love others unconditionally. Don’t judge someone before you know their story. Brain fog is a real symptom and it affects me every day. Many people don’t believe that, but that’s just because they’ve never walked a day in the life of someone living with it.