Tag: fatigue

Episode 14

Posted on by Michele

I have been absent lately. I haven’t published for awhile and several folks have reached out to me wondering where I have been. Honestly, the last few months have been rough for several reasons, but one thing I have learned is that sometimes you just need to step away and take care of yourself. For the first time, I listened to my body…and my soul…and I took some time for me. Sometimes life hits you hard and amidst it all you need to listen to the voice in your head that’s telling you to slow down. But I’m getting myself back into the mode of fighting for survivors and sharing my story.

It was February 21, 2020. I’ll never forget that date. My mom was lying in a hospital bed at home and we knew she didn’t have long. I was headed up to be by her side. We had already said our goodbyes privately by phone earlier in the week and she left me a voicemail so that I would always have her voice to listen to on tough days. I woke up that morning and steeled myself for the long days ahead. I knew this was going to be draining…physically and emotionally, but I needed to be there for my dad, my siblings, and her.

We left the house and stopped at Chik-fil-A to grab some breakfast before driving the three hours “home.” We had already been through this journey with my mother-in-law years before my aneurysm, but that was unexpected. My mom had fought lung cancer valiantly for two years and took a quick turn just in the last month. When we got to the restaurant, I stood in line and noticed I was feeling…off. My legs felt like concrete and rubber at the same time. My husband had to prod me forward to the counter to order. As I began to order, the words wouldn’t come out and things were slow and seemed to slur from my mouth. I just looked up at my husband terrified. He looked at me questioningly and ordered for me. The unspoken thought between us was that my brain was overwhelmed with the grief and stress that was coming. Add stress to brain trauma and things get even more challenging.

I recovered quickly and walked to a booth and sat down. Our food was brought over and we ate in relative silence. I sat staring out the window over my husband’s shoulder, watching the steady stream of cars go past. In a blink of an eye, he was a mile away as the wall behind him pushed away and his voice trailed off into a tunnel. Suddenly sound was distorted, I was shaking and nauseous, and I heard a voice come out of my body that was unrecognizable say “honey, honey, there’s something wrong” and in that moment, my head dropped back and I lost consciousness.

I regained consciousness in what felt like hours later, but what was actually mere seconds. My husband was asking if I was okay. My hands were still shaking pretty badly, but everything else was returning to normal. My vision seemed restored. My hearing was back to normal. I was no longer dizzy or nauseous, although I had no desire to finish my breakfast. My husband asked if I could walk and get to the car. I told him I could and I took his arm for stability. He got me loaded into the car and he got into the driver’s seat and he asked “where do you want to go?” I gave him a weird look and said “mom’s”…as if there was any other option. He looked at me as if I had two heads and said “we’re going to a hospital…which one? I’m sorry but you have to go get a brain scan”. I was furious…muttering under my breath like a teenager angry with a parent. I sat there in the passenger seat with my arms folded across my chest muttering under my breath something along the lines of “you and your damn brain scans.”

We arrived at urgent care and they took me back immediately because of my history. They did a brain scan before even getting me into a room. The scan came back normal but blood work showed an extremely low level of potassium. They were concerned about a possible heart attack and transported me by ambulance to a hospital for care. I kept asking if this is what caused the episode in the morning and everyone just kept saying it was concerning. After the entire day, several pills, and 4 bags of potassium infusions, they sent me home with orders to follow up with my family doctor. I ended up on prescription potassium pills because no matter what we did, my potassium just wouldn’t stay in the normal range.

I continued to have strange feelings. It seemed to be monthly that I’d have an episode like the one that day at Chik-fil-A. In between those big events, I’d have other issues like feeling I was floating as I was walking or, even more strangely, suddenly feeling like I didn’t fit inside the space I was occupying. I had mentioned to the doctors early on in my recovery about some of the unusual feelings but I never really pressed it and it was just assumed that this was just part of my recovery. So often, I kept these things to myself because I felt like a hypochondriac. It always seems like there is “one more thing” and I hated feeling like I was crazy…or that they thought I was. However, as time went, all of these things started to bother me more. I began to ask more questions. I began to press for answers.

When I pushed on my neurology team, they thought it might be my heart and wanted me to talk to my family doctor. But as they heard more of my symptoms, they decided the best course of action was to send me to an epilepsy specialist for evaluation and possible EEG. My epilepsy team worked quickly to find an answer. I was scheduled quickly for a five-day video EEG stay in the hospital. It’s funny that the moment it was scheduled, a wave of fear washed over me. Perhaps ignorance really was bliss. Maybe I was better off just staying completely unaware of any problems.

Since my episodes seemed to be monthly, my doctors weren’t really convinced that we would catch anything on the EEG. We would need to be extremely lucky to catch that monthly occurrence, but we were going to try. We were all just hopeful to get some answers so that I could get the treatment needed to improve my life.   

When I arrived at the hospital, they got me settled into my room and began to connect me to what felt like thousands of wires. I was beginning to understand why Frankenstein was so angry. Because I was in the epilepsy unit, I couldn’t get up on my own. I was considered a fall risk because of the seizures so anytime I needed to go to the bathroom I had to call for a nurse. Anytime I wanted to sit in the chair, I had to call for a nurse. I couldn’t even let my husband help me. It had to be the nurse.

Once I was all hooked up and the cameras were active, it was fascinating to see how the EEG reacted to the simplest tasks like me chewing, laughing, smiling, or rolling my eyes. Every task was captured on the monitor.  Each motion was emblazoned on the screen and captured for the doctors to review. It was fascinating and creepy. I felt like a baby who just discovered their toes. I kept making faces and talking and moving so that I could watch the machine react. I’m sure the technicians watching were wondering what was wrong with me. I’m apparently just easily entertained. The newness eventually wore off and I settled in and watched tv and played games on my phone to pass the time. It was going to be a long five days.

That first morning, the doctor came in and told me that they didn’t capture anything but not to give up hope…we were just at the beginning. Somehow that didn’t reassure me. I wasn’t feeling very optimistic. The days were long and boring. I couldn’t move around. I couldn’t have visitors because of COVID-19 so it was just me and my husband. He was able to work.  I was bored out of my mind. The doctors decided to try to encourage seizures through sleep deprivation so they asked me to stay up as late as possible, but at least until 2:00 AM and no napping during the day. So day 2 became an even longer test of my abilities to keep myself entertained.

I managed to stay up until after 3:00 AM before finally falling asleep and, as is always the case in any hospital stay, I was up early because of the constant barrage of interruptions. When the resident came in that morning he told me that although I didn’t have a seizure, I did have a “pre-seizure”. He told me that the doctor would be in later to discuss. I was so excited because I felt like maybe we were finally on the verge of getting answers and that’s all I wanted.

When the doctor arrived with an entourage of students, I mentioned what the resident said that morning and it turns out that isn’t really “a thing” but apparently what he meant was that there were some indications that a seizure was starting but never fully formed. They wanted to try another night of no sleep. They wanted me to go longer if possible…which meant my exhaustion from the night before was only going to get worse. I understood the point of this, but it certainly wasn’t making me happy. I was becoming irritable and annoyed. I didn’t like being a guinea pig anymore. I didn’t care if we got answers. I just wanted sleep and to be left alone. But I signed up for this.

That night I pushed myself to stay up later. As the hours ticked slowly by, my exhaustion hung in the air. I could barely keep my eyes open after the night before and staying awake all day. The neuro fatigue was brutal and I finally collapsed. I have no idea what time I finally gave up, I just knew I couldn’t go anymore. I swear I only slept for minutes before early morning came and my next neuro check.

The medical team began to trickle in and the doctor sat at the foot of my bed. His easy bedside manner put me at ease as we walked through a battery of questions. He wanted to understand my symptoms in the past. He pressed for every detail that we could remember. He explained that they have not been able to catch an actual seizure while I was there. They were able to catch several blips that could  indicate a seizure may be about to form, but never did. But, most importantly, everything I have been telling him and other doctors about my events, indicate frontal lobe seizures and it correlates with the location of my aneurysm. He wanted to try me on seizure medicine to see if my symptoms improved. Basically, it was our best opportunity to prove our suspicions without keeping me in the hospital indefinitely.

He also diagnosed me with Alice In Wonderland Syndrome (AIWS), which I swear he made up and was making fun of me…did he think I had a Cheshire Cat too? As I sat there waiting for the punch line, he explained. Essentially, it is a condition where your visual perception is altered from reality. At first none of this sounded familiar, but as we continued to think more about it, pieces started to fall into place. My husband remembered that while I was recovering in ICU, I asked multiple times if I was in a “normal sized” bed because it seemed like I was too big for it. There were also times when I would walk into a room in our house and feel like the ceiling was coming down on me. Or that I was floating when I was walking. Or that the walls would push a mile away. All of these were things I never mentioned to doctors because they seemed silly…or crazy. I was so afraid that the doctors would look at my never ending list of ailments and think I had to be making this stuff up. So I suffered silently. He said that the seizure medicine should help these episodes too. He warned me to be patient as it often takes time to get the right dosage for seizure management, but we’d get there.

I was near tears. It may have been the exhaustion, but it finally felt like maybe we were getting some answers. On the flip side, that also meant that there were more problems. It was something I continued to struggle with…before my aneurysm, I had no health issues. I took no medications. Since that fateful day, I have typed lists of medications and illnesses because there are now too many to remember. It’s amazing how drastically things can change in an instant.

Episode 13

Posted on by Michele

My migraines started in my early teen years. With me, they definitely seemed to be hereditary. My dad had them, as did his mother, his brother, and my cousins. I remember when I was little my dad would literally stand and bang his head on the wall when his got so bad. I never understood what he hoped to accomplish with that, but he did it. Mine were fairly tolerable and less frequent than my dad’s. As I got older, they got more intense. I remember my senior year in college, they had gotten somewhat debilitating. I was an English major with a minor in writing so I spent a lot of time writing papers that last year. I would sit at the computer, in tears, with a trash can on my lap, repeatedly taking breaks to vomit, then going back to typing my papers. Looking back, that was a miserable time, and really unhygienic.

I had migraines with an aura. Typically, before the pain would strike, I’d see a haze of color in my peripheral vision. It was usually purples and pinks, with traces of blue. Sometimes it was as if my horizontal hold would go out in my eyes and they would almost “flip down a page” like the world’s worst viewfinder. My headaches would send me cowering in a dark room, made as cold as possible with fans and air conditioning, where I could take refuge until it passed. I would lay in bed, in this cold room, buried under a pile of blankets, with the heating pad wrapped around my head, Vick’s on my forehead and under my nose, and a hot damp washcloth draped across my eyes. When the first injectable migraine medicine came on the market, I was beyond excited. My doctor was nervous for me to try it because I had a known heart condition and we had no idea how it would work. He wanted me in his office for my first injection. So there I was, in his office the next time a migraine struck, and he gave me the injection. I laid back on the table and waited. Twenty minutes passed and it felt like my throat was closing off. Apparently, that was a “normal” reaction. I’d rather live with the headaches!

My headaches got even worse after I got married…wait…there’s a joke in there somewhere, I’m sure of it. Anyway, it got to the point that my husband was taking me to the ER almost monthly for a headache cocktail. The hospital was beginning to suspect that I was a drug addict looking for a fix. They told my husband that we needed to find a better solution for my migraines. We went up to the Cleveland Clinic for an appointment with a neurologist. I don’t remember if they had done any scans of my brain or not, but I do remember they had put me on an anti-seizure medicine to prevent headaches. The doctor told us that migraines are cyclical and feed off of each other and that we just needed to break the cycle. After about six months, they took me off of the medication. Shortly after that, we moved from Ohio to Knoxville, Tennessee. My migraines were gone. For the next 15 years, I lived nearly migraine free. It was a delightful existence with only one migraine per year. In the grand scheme of things, that was an existence I could celebrate!

We had moved from Tennessee to south Florida to Dallas, Texas. Change of location didn’t seem to impact my headaches. I got terrible sinus headaches with storms, but they weren’t migraines. Weather patterns always seemed to play a role. By this point, I had learned to recognize the auras and would take a couple of over the counter migraine pills and I’d never get a full blown headache. I had learned to manage the situation and was rather pleased that I finally had a solution. Maybe I had grown out of the headaches. My dad had stopped getting his too, but they suspected that his stopped because of blood pressure medicine…another curse that runs on his side of the family.

In 2012, we moved back to Ohio and almost instantly, my migraines came roaring back to life. It felt has if they had been in hibernation this whole time and simply needed to recognize the landscape before they would spring back to life to torment me. I worked a stressful job as a project manager and the hours were long. I assumed that was the cause of the return. My doctor told me to manage the stress better. Oh, okay, that is a completely reasonable request…let me just add “relax” to my to do list.

The headaches continued getting worse until I finally went to see a neurologist locally. He suggested a different anti-seizure medicine from what I had used years before and for months, we played with dosing. Finally, we had gotten to the point where I was getting only 5-7 per month. I was actually pretty happy with that…it’s amazing how low your expectations drop when you feel like hell. The doctor wasn’t happy with the results and thought we could do better so he increased the medicine one last time. I say final time because that level of medication seemed to be a tipping point for me and I became suicidal. Backing off the dose and returning me to a lower dose didn’t help. The medication and my body were no longer compatible. We tried several other drugs in that class of medication to no avail. They all had the same effect.

As the years passed, the headaches continued to get worse…more frequent, more intense. We all know how this story turns out so I won’t bore you with a retelling of the day my brain tried to kill me. Instead, I want to share how this story has progressed. My brain started bleeding on March 13, 2018. It ruptured on April 14, 2018. And I have literally had a migraine every single day since that March day. I’ve had a headache for 912 days straight…I’m not counting or anything. There are very few things that I would like to do for 912 days straight. I can say with certainty that living with a migraine is NOT on that list. But, here we are.

This journey has been an interesting one and I am beyond grateful to have an amazing care team at the Cleveland Clinic who has worked with me through every experiment we have tried to find the right combination of drugs. We have tried old drugs, brand new drugs, drugs for blood pressure, anxiety, muscle relaxers. Oral drugs. Injectable drugs. Diet changes. Activities like meditation. And if I come to them with a natural remedy, they’ll investigate to make sure it isn’t going to interfere with any medications or with my brain. I cannot stress this enough…it is so important to find a doctor who will listen to you. One who will fight to find answers. That’s what I have found and it’s been a game changer for me. There was a moment where they wanted to try me on a different blood pressure medication and my BP skyrocketed. They were extremely quick to make adjustments and return me to my old medication, noting that some meds just don’t work well with some people.

As I said before, we’ve tried it all. We’ve tried brand new drugs to the market, which normally makes me nervous. I don’t like being the first to try things (I realize others tried them during the trials but still). But this ongoing headache has been so annoying that I’d try just about anything. Oh…meth works for headaches? Okay, so maybe I won’t try ANYTHING. Anyway, I had been doing Botox for a while, but it wasn’t really giving me any relief so I stopped that and started using a monthly injection of a new drug. It seemed to work great. I was getting almost 15 days per month that I would call “headache free” despite still having a dull, nagging pain. At least the headache was a 1-2 on the pain scale, rather than a 7-9. Then on month 5, the injection completely stopped working. We decided to try a different injection. This one seems to be holding steady after 5 months. I’m getting about 15-20 days of “headache free” days during some months. Some months are worse than others. I also have a selection of abortive medications for when I get breakthrough headaches. Depending on the severity, I can choose from any of 5 drugs to help me cope and get relief. It’s not ideal, but neither is living with a migraine for over 900 days straight.

One thing that has surprised me a great deal is that it was recommended that I try THC for my anxiety, PTSD, and chronic pain. So, I got my medical marijuana card and spoke with the pharmacist on site at the dispensary. Several combinations were recommended when I got my license in 2019. I tried multiple things…smoking, tinctures, gummies…but got no relief for the headaches. It did provide relief for the anxiety and the PTSD though. This year, when I went to the doctor to renew my card, we talked through how my pain was. He wasn’t happy that I was on so many medications. He told me the point is to get me away from pills…especially pain pills. He suggested I try transdermal THC patches. So, when I went to the dispensary, I got a small pack to try. Later that day, I felt the migraine getting worse and I asked my husband to put one at the base of my neck, between my shoulder blades. I could not believe it that I was headache free within 30 minutes. It wasn’t a 1-2. It was gone. My mind was blown. Let me tell you, I went back to the dispensary and bought a ton more! Some days they work, other days, not so much. In the last month since I’ve started this regimen, I’ve probably had 7-10 days completely headache free. I don’t automatically put on a patch…I wait until the headache really starts because I dream of a day when I won’t actually have a headache and I don’t want to waste a patch if I don’t need one…ever the optimist. These patches have truly changed my life for the better. Days without headaches? Is this what the rest of you feel like every day? Damn y’all are living the good life.

We still notice that weather plays a role in my headaches. The barometric pressure changes are easy to pinpoint. I can tell you within an hour when it’s going to start raining…it’s a great party trick. This week, we had tornadoes on Labor Day and I truly thought I was dying. I curled up in the fetal position and cried. It was hell. Nothing helped. I was willing to let the tornado take me to Oz so I could ask the wizard for a new head. Living in Ohio definitely doesn’t seem to agree with me.

My 30 year journey with migraines has taken a few detours that I never expected. I went down some pretty terrifying roads and totally ignored the “Road Closed” sign two years ago. This has been an exercise in patience and sometimes frustration. But like I said last week…there’s always someone worse off than you. There’s someone out there who would love to have your worst day. No matter what, I am going to keep pressing forward in hopes that I’ll once again have months where I have no headaches. I’m not aiming for hours, or days. I want to count the months. I’m greedy that way. And I’ll get it someday.

Episode 10

Posted on by Michele

I’m exhausted. Those two little words say so much and not nearly enough.

Fatigue is a major issue that a lot of brain trauma patients deal with. It isn’t the “normal” tired. It is a chronic and overwhelming exhaustion that is debilitating. One of the best analogies I’ve seen is a battery. Before the trauma, your battery could fully charge. Every night, you’d go to sleep and wake up in the morning with that battery charged for your day ahead. After the trauma, your battery no longer fully charges. It’s like a 3 year old cell phone that can only hold a 50% charge. On top of that, every activity takes more energy than before, so that battery depletes a lot quicker than it used to. That battery now runs out early in the day, unless you can recharge it. That makes doing anything a challenge. Simple things like focusing on a meeting at work will zap that battery and trigger something called neuro-fatigue. Although the battery example provides a great visual to people, my go-to is that it is a tiredness that goes deep into my bones.

Before my aneurysm, I worked in demanding and stressful jobs. I often worked extremely long hours and traveled a lot for work throughout my career. My weekends were spent either working or doing things around the house. I would spend an entire day cooking and by the time the day was done, I’d be tired, but it was manageable. It was a good tired. A tired that comes with the feeling of accomplishment. My husband and I would often go on hikes, camera gear packed, and spend a day out taking pictures and enjoying nature. Those days were tiring but my battery would always replenish.

After my rupture, I didn’t sleep. I was exhausted all the time. I told my doctors that I would only sleep for an hour at a time. They explained that fatigue was common and normal. But they also told me that I needed to sleep so that my brain could heal. They prescribed a variety of sleeping meds and one after another failed to work. I’d still only sleep for an hour at a time. The pills made me feel tired, but sleep never came. I became a zombie and continued to express concern. Eighteen months after my rupture, I went to a neurologist who specializes in sleep issues. After two sleep studies, they discovered that I cannot reach REM sleep anymore because of the damage from the rupture. My brain wasn’t healing because I could never get to a deep restorative sleep.

We finally found a treatment plan that gets me to REM sleep about 4 nights per week, so that took care of part of my exhaustion. The neuro-fatigue was still a challenge. Part of my recovery has been weekly appointments with a vestibular therapist, speech therapist, and occupational therapist. It became apparent that part of the issue was that I was still trying to live my life the same way I always had, rather than considering my new limitations. As I worked on my speech, balance, and vision issues, all three therapists had the same advice…slow down.

I struggled to understand the neuro-fatigue. I looked for causes, patterns. It never seemed to make sense. Things I did yesterday without issue, I couldn’t do today. Things as simple as baking a boxed cake mix would knock me down for 3 hours. Trying to read a book for longer than 15 minutes would trigger intense pain and wipe me out for the rest of the day. My therapists told me that I now had to break things up throughout the day. I could no longer spend the morning cleaning the house. Instead, I was told to work for 30-60 minutes at a time, depending on the task, then rest for an hour or two before starting something new. My nature is to “power through” and finish my work. It’s who I am…or was.

As a brain trauma survivor, my energy stores are depleted quickly because the brain is trying to do things on a different path. It’s like your commute to work being blocked by an accident so you take an alternate route. You aren’t familiar with that road, but you know it leads to your destination. Your brain is sucking up your energy trying to do things differently. My brain is trying to rebuild pathways that were destroyed by the rupture and the processing takes more energy and time now. When I push myself too hard, the recovery can take up to three days. I am functionally useless during this period. It starts with me slurring my speech, stumbling, and completely unable to form a coherent sentence. I will collapse into bed and sleep as much as possible. There is no cure besides rest.

Along with so many other things post-rupture, this was a new obstacle to navigate. The challenge was frustrating…it IS frustrating. I’m still learning to cope with this. It is honestly one of my constant struggles and the thing that sends me into the “why me” mode. I hate not being able to function like I used to. I hate not being able to go non-stop all day. I miss the me that used to not think about where I would be when I got tired.

The good news is, I’m learning to recognize the signs before it gets to the point of complete exhaustion. I started to notice that as my battery runs down, I become more irritable, I struggle to concentrate and focus, noise becomes more intense, and I feel “heavy.” It’s as if my blood turns to lead and my feet are encased in cement. I’ve become more in tune with my body. I now pay attention to all the cues my body shows me. At the first appearance of any of these signs, I stop what I’m doing and lie down. Well…most of the time. I still have my moments when I think I’m invincible and I keep pushing myself, but I’m learning.

Like everything on this journey, it makes me appreciate my blessings. I’m grateful to be alive to feel tired. But I’m definitely going to take a nap.