Living with Episodes
May Log Weekend
May 16-18, 2015
The kids went to stay with Grandma and Grandpa for the long weekend which gave me a quiet transition back home. On Saturday, I spent much of the day sleeping in my own bed. I also enjoyed finally being allowed to have a bath in my nice tub.
On Sunday, my husband went outside to do some yard work. I thought I could water the school’s potato plants in our driveway. I got about halfway through watering when I felt my body getting heavy. I was able to get myself down before having an episode. My husband calmly mowed the front yard until a neighbour came running over and asked if she should call an ambulance. My husband assured her I was fine and told her not to worry. A few minutes later I was able to move again. I took a short break then finished watering the plants.
That night my husband and I decided to go to Costco to get some wings for dinner but I had another episode in the car so he decided to go to KFC and take it home instead, so he wouldn’t have to worry about me in the store.
On Monday, Mom and Dad brought the kids. home. It was so nice to see them. I forgot how much energy they had! I had to rest a lot, but it was great to spend time with them. I mostly stayed on the couch, but things were finally starting to feel more normal.
It was really nice having Mom and Dad around to help take care of the kids and myself. I am very lucky to be surrounded by amazing family and friends.
I have to share this!!!
I tried calling “Crazy Karen’s brother again and I left a message. I got a call back a couple hours later. As it turns out, she does have a brother who is very confused about her. Apparently he has tried to get in touch with her but the hospital won’t give him any information, nor did they pass along his messages. I told him what I knew about her and although he lives out in Mission, he will try to go out to the hospital to visit her.
I phoned the hospital and left a message for her nurse today (since I have a better idea now on how it works there). I also phoned Femida and passed along the message. I was happy to hear that as I was on the phone, the nurse came in and gave Karen the message.
Tonight, Tavis and I will return to the hospital for one last movie night with the girls. I will also let Karen use my phone to call her brother. He is expecting the call.
What a good day!
Daily Episodes
Symptoms:
Stiffness in my big toe from May 15 – July
The stiffness began to get worse as the days went on. What started as an ache in my big toe, spread to the ball of my foot the following week. By June, it sometimes got so bad that I had to limp after I had been sitting a while.
I also noticed that my fingers would sometime crack after doing anything that was physically straining, and they too would get stiff and sore.
I thought this might have been caused by my inactivity for so long while I was in the hospital.
“Should I call an ambulance”.
This is the phrase we hear most often when I have an episode in public. It is scary, so it makes sense. However, we have been clearly instructed not to go back unless I have severe pain or stop breathing.
Daily Episodes
Symptom:
Shortness of breath from May 21 – July
Today I noticed that I had shortness of breath all day. It wasn’t bad enough that I couldn’t breathe, but it was annoying. It seemed to last for weeks.
I could breathe, but I was never able to take a full deep breath.
The Last Regular Episode
Thursday May 21, 2015
Yesterday, Mom and Dad went home for Mom’s pre-op. This was my first day home alone. I got up at 7:00am to see my oldest son off to the school track meet. I was tired but tried to stay up and tidy the house.
Around 9:30am I had an episode that lasted about 10 minutes. I laid down in the hall then couldn’t get up. I couldn’t move my legs or wiggle my toes for about 10 minutes. Then I was able to get up and walk to the couch.
A friend stopped by for a visit which was great. We had tea and chatted for a while. I had another short episode while she was over. I slowly started to gain my energy back. My daughter came home at lunch, and after she went back to school my husband came home early so we could go see our son compete in his District Track Meet. We got there a bit late on a hot and sunny day. I had to walk very quickly to make it in time. When we arrived we saw friends at the gate so I stood at the fence with them.
A few moments later I had another episode. I laid down just in time. I was able to open my eyes after a few seconds and talk but it took about 5 minutes before I could move my toes again. My friend helped explain to people that I wasn’t dehydrated and that I was alright. Everyone nearby was very helpful.
This was my last daily episode. Throughout June and most of July I had very few episodes and was able to get back into normal routines. I took the kids on bike rides, spent time at the lake, went swimming and hiking. The only thing I did not do was drive.
Daily Episodes
Trip to Prince George
June 12-14, 2015
We went to Prince George for my Grandma and Grandpa’s anniversary celebration.
Last night I slept right through without getting up even once. I had a good sleep but I still did not want to get out of bed. An hour later I had a blueberry muffin and hot chocolate from tim Hortons. In the car my husband noticed my eyes were getting heavy. Then I went into a full episode that lasted 5-10 minutes.
A couple hours later we were getting family photos at my Grandparents’ anniversary event. I had another episode between photos that lasted a couple minutes. Later that day I was tired but I did not have any more episodes.
No longer tracking episodes
No one seems to be interested in my episodes, so I have decided to stop tracking them. They are no longer happening on a daily basis. We know that I am not in danger. When my episodes happen, I need to relax and wait it out.
I eventually created a laminated card that I carried with me anytime I left the house alone. It had my name, a description of my condition, and my emergency contact information. It came in handy a few times, but even though it said I was fine and not to panic, people still wanted to call an ambulance.
Eventually, Tavis decided to purcahse a treadmill so I could still get exercise without leaving the house.
Thus began my “new normal”.
Episodes Return
October 2016
In October, my episodes returned and it began happening multiple times a day. I was still not recording them, but after a few days, it got so bad I barely had energy to get up in the morning. I had very little energy and spent a few days in bed. By this time, I had been on anti-depressants for several months and was very deflated that I seemed to back at square 1.
I began seeking alternative solutions. After a few days, the episodes became less frequent, but were still happening. My neurologist increased my dose of antidepressants.
I started taking Serrepeptase in November, and 2 weeks later, the episodes seemed to stop again. I am not sure if it was the increased dose of Venlafaxine, Serrapeptase, or just time.
Over the next 6 years, the episodes were still present, but they only ocurred a couple times a year.
In late 2017, I slowly reduced my dose of Venlafaxine. By the end of the year I was completely off. There seemed to be no change in my episodes.
In 2018, my episodes seemed to disappear completely. I stopped taking Serrepeptase. Even after I stopped taking it, the episodes seemed to have stopped for good. I continued to follow up with my neurologist because I still never received a diagnosis that made sense to me and I wasn’t to make sure I had support if they ever returned.
Episodes Return
June 3, 2022
Over the past 2 years, I almost forgot about my episodes. Today was a reminder that they are still a part of my life.
At Costco, as were walking back to the car, I realized I was exhausted. It took every bit of energy I had just to open the car door. I didn’t go totally out but after getting in the car I couldn’t move my legs or lift my eyes more than half way. My body was limp and I could not put my seatbelt on or scooch up in my seat into a more comfortable position. I was focussing on taking deep breaths while Tavis was loading thte groceries in the car. My speech was slurred but mostly just a moan.
The past few days, I have been getting sick. I felt like my body was fighting something, my stomach has been upset, and I have had low energy. I have still been running on the treadmill and doing workouts. There haven’t been any major changes in my diet or my daily activities. I ate a protein bar before we left for Costco, approximately 30 minutes before.
Late Night Episode
January 12, 2023
I spent the evening sitting on the couch with my ipad, cleaning up my photo albums. I got up to go to bed and met Addison in the hallway. I was showing him some photos when I suddenly got dizzy and felt sick to my stomach. I could feel my skin getting hot.
I went into the bedroom and laid down on my bed. The dizziness went away but I had an episode where I couldn’t move or say anything. I felt completely drained. When concentrating, I was able to wiggle my toes after about 30 seconds. Less than a minute later it passed. My energy returned and I had no nausea or dizziness. I felt as though nothing happened. I went downstairs and finished showing Addison the photos.
This was the first time that I had dizziness and nausea.
Ping Pong
January 21, 2023
In the middle of a ping pong game my ear got itchy. Then I had a cramp and got dizzy.
I decided to lay down on the couch. I could still speak but my body felt limp and Ari said my forehead was hot. He took my temperature but it was cool. I rested for a few minutes. The dizziness went away. I could feel the enrgy returning.
As soon as I was able to move my feet, we resumed our ping pong game.
On the Ferry
April 23, 2023
We had just spent the weekend on Vancouver Island. We were on teh late ferry home.
I had been feeling nauseous for the past hour. I went to get tea. Then walked Shadow along the upper car deck on the ferry. We did 1.5 laps and I started getting tired. I made my way back to the car. I went to open the door and it took several tries for me to get enough strength to open the door. Tavis saw me struggling and opened it from the inside and swung it open. I barely made it inside before I lost all my energy. My heart rate was 87 and went down to 67. My eyes were tearing and nose was running.
Yesterday Larissa was telling me about Meniere’s disease. I should look into that.
Alaska Cruise
October 21, 2023
I had just spent the past 6 days on a Norwegian cruise ship with my Mom, sister, and her family. We had an amazing time, but one of the kids was sick when we left. By day 4, everyone was sick (with a head cold) except me and my brother in law.
We were having our last buffet dinner on our Alaska cruise. It was an amazing time, despite everyone getting sick. I was full of energy as I went to get a plate of food. I actually felt like dancing. As I was walking back to the table I started to feel exhausted. I could feel my eyes getting heavy, and my feet were starting to drag. By the time I reached the table, I was completely spent and had barely enough energy to put my plate on the table.
I couldn’t get to my seat so I tried to sit down against a wall. I misjudged and crashed down into the railing with my hip. It only lasted less than a minute, but my sister and her husband were there and reassured those around that I was ok. As I came out, my energy returned and I felt as full of energy as I did before.
My hip hurt quite a bit, but I didn’t realize how hard I hit until the next day when I found a huge bruise while I was in the shower.
I am normally better at getting myself down, but it had been so long since my last episode that I really didn’t think it was going to happen.
Mexico Vacation
November 4, 2023
Tonight we decided to eat at one of the restaurants on the resort. There were large groups sitting around the large grill. The chef cooked the food in front of us. There was a lot of heat on the grill and the stools were very high. I noticed part way through dinner that my legs were falling asleep. I thought it was from dangling so long. I got up a few times to walk around. I was quite exhausted and didn’t have a lot of energy. I also didn’t eat much because there wasn’t a lot at the restaurant that I wanted to eat.
After dinner, we decided to walk down to the buffet to check out desserts. As se were walking down the stairs, I grabbed Tavis’ hand and told him I had no energy. By the time we reached the bottom of the stairs, I could barely hold myself up. Luckily there was a chair and tavis sat me down. We all just sat there waiting for me to wiggle my toes.
Once I felt the energy returning and I could wiggle my toes, we carried on with the evening. I was still a bit tires, but it was manageable.
Mexico Vacation 2
November 8, 2023
We have spent the last couple days relaxing at our resort in Mexico. We are on a work trip.
We were walking back to our room from the buffet. It was about a 10 minute walk. I started to feel tired as we passed another buffet just outside our building. I thought it was a good thing we were going to the room. As soon as we turned the corner to the stairs I tried to go up the stairs and I realized I couldn’t lift my feet high enough for the stairs. Tavis noticed me struggling and sat me down. It only lasted about 30 seconds and then I started to feel better. I got up and walked the rest of the way.
Walking the Dog
November 12, 2023
As I was walking Shadow. I felt really good. I walked up the hill across Como Lake and as i was going through an alley, I felt my eyes glaze over and I couldn’t focus on anything. I knew I had to find a place to sit. I sat on someone’s driveway, propped against a basketball hoop. It only lasted about 30 seconds. My nostrils started to run and my eyes watered. Then I could feel it lifting and I was able to continue my walk with renewed energy.
Lastnight, we flew in from Mexico and arrived in YVR around 1:00am. I was in bed by 2:00am and woke up at 8:00am to drive Addison to UBC.
Side Note:
Earlier yesterday morning, the walkways were wet and I slipped down the stairs in our resort in Mexico. I shredded my elbow and have some bruising on my back. I have been falling a lot more lately. I have been noticing bruises on my arms and legs from running into a doorways, or tripping on silly things. I have a bruised knee from tripping when taking the trampoline down. I also had a bruised hip from the first episode in October. Not sure if I am bruising easier or if I am just more clumsy.
This afternoon I purchased a bottle of Serrepeptase to see if it will make a difference.
Strange Leg Pain
November 17, 2023
I climbed into bed and within minute, I felt a strange shooting pain in my right leg. It seemed to be happening every 10 seconds or so. at first, it was just annoying. It started behind my knee and shot up into my thigh. I didn’t want to keep Tavis up so I went to sleep on the couch.
Within 10 miinutes, the pain got worse. I went to the medicine cabinet and took an Aleve for the pain. I noticed I was limping. The pain started to become so painful, I could barely put weight on my right leg. By the time I reached the bathroom, the pain was so bad I had tears streaming down my face and I was leaning over the sink because I felt sick to my stomach.
After a few minutes, the pain started to lessen so I sat on the ground. I realized moments later that I couldn’t move my toes on my right leg only/ I waited for it to come back but after a few minutes there was no change. I woke up Tavis, and he helped me to bed. Along the way, I bumped my elbow which caused a lot of blood. By the time we got that under control, I started to get movement back into my toes and eventually my leg.
I was able to limp around the bed and climb in. I fell asleep and when I woke up my leg was totally normal. I just had a sore elbow.
A Busy Day
December 20, 2023
I was very busy today with work, then getting Christmas gifts organized. I picked up kids from school and realized we had a meeting at the school at 7:00pm.
I was making lasagna for an early dinner. As I started, I felt very tired. I realized that had forgotten to eat today. It took all my energy to open 2 cans of tomato soup so I decided to lay down for a minute on the floor in the kitchen. I didn’t actually go out fully but I was laying down for over 5 minutes. My energy never fully returned. I was tired the test of the day.
Christmas Dinner
December 27, 2023
While making Christmas dinner, I went to mash the potatoes. I barely had the strength to drain the pot. I was out of breath which normally doesn’t happen while making dinner. When I went to mash them I didn’t even have the strength to do get the potato masher through the soft potatoes. I quietly put the masher on the counter and walked to the couch.
I laid down for a minute but I didn’t go totally out. I closed my eyes and took a few breaths. I could feel the energy returning after a few more breaths. When I got up I grabbed the potato masher and was easily able to mash the potatoes. A few minutes later we served our plates.
I got my food and went to the table. My plate seemed quite heavy on my way to the table. I put the plate down and walked back to the couch to lay down again. I took some deep breaths and seemed to get my energy up. I went back to the table and ate my food.
After dinner I took the kitchen waste bin out. When I got back up stairs I was completely out of breath. I started to get dizzy and I had to sit down. I checked my heart rate on my apple watch and it was 63bpm. I felt like I had just run 5km but my heart rate was low. When I caught my breath I went into the kitchen and started loading the dishwasher. I felt the energy draining again. I laid down and my heart rate was down to 60. I decided to lay down and take a nap. About 3o minutes later I seemed to be back to normal.
I have eaten a lot of baked goods and very little protein the last few days. I also stopped taking the Serrepeptase on Christmas.
Visiting Family in Louisiana
February 6, 2024
I am in Louisiana visiting my cousin.
Yesterday I was up at 4:30am to travel to Houston. My flight was delayed 5 hours. Then I missed my connecting flight and my cousin drove to Houston to pick my up. it was a 3 hour drive to DeRidder, LA. We arrived around 11:00pm.
I was up at 7:30am this morning for my cousin’s doctor appointment. Considering the time change, it was an early morning). Yesterday I ate chicken strips. Today I ate a cinnamon bun. Around 1:00pm we went to Walmart to get groceries. While at the checkout I had an episode.
I started to get tired as we were walking toward the checkout. Normally I am full of energy, but I just leaned my weight on the buggy, hoping to get my energy back before my cousin finished checking through the groceries. I didn’t totally lose movement but my my eyes were watering and my legs were both too weak to move.
When my cousin finished, she pulled the buggy forward to go. I tried to walk but my legs just gave way and I gently fell to the floor. My cousin explained to those nearby that I was fine, just having an episode. I had use of my arms. About 20 seconds later I was able to wiggle my toes. As soon as I could, I jumped to my feet and we walked to the vehicle.
RV Show in Houston
February 10, 2024
Today we went to an RV show in Houston. I felt a little off balance the whole time we were in the stadium. The lighting really bothered me. We spent a couple hours climbing in and out of various RVs.
While climbing up into an RV I lost my balance and my strength. It was a struggle to get inside so I immediately sat down on the couch and waited for the episode to pass. My cousin thought I was going to pass out. She commented that I went very pale before I sat down. I never did pass out, but later that night we were in another store and got dizzy. I lost my balance and fell backwards flat on my back. I immediately got up and was ok. I did not have an episode, just a little dizziness.
Visiting Family in Louisiana
March 16, 2024
I was raking the leaves in the back yard and filling the yard waste bins. After about an hour I suddenly felt myself getting very tired. It took all my strength to lift the leaves into the bin.
I squatted for a few seconds next to the bin to catch my breathe. Then I laid down on the grass and let myself rest a few more minutes. Ayva brought me some water and once I regained my strength, I finished filling the bins.
Washing Dishes
March 19, 2024
I was cleaning the kitchen and washing dishes after dinner. I almost finished, but the cup I was drying felt heavier than it should have. I immediately put the cup on the counter and walked to my bedroom. I laid down on the bed.
It took less than a minute before I could feel the energy returning. I went back and finished drying g the dishes.
In the Car
April 10, 2024
I was busy today and didn’t eat lunch. I had some ritz crackers and a protein bar before walking the dog. Then I went to Costco with Tavis. I was tired while we were shopping but didn’t think much of it.
Tavis was driving, and as we were on our way home I could feel myself getting more tires. About half way home, I felt so tired I closed my eyes. I didn’t attempt to move my feet until we got home and I realized I couldn’t.
Slowly, I could feel the weight being lifted off me. I waited in the car for my legs to move before I got out. A few minutes later I had most of my energy but I was still a bit sluggish the rest of the evening.
At the School
April 11, 2024
Last night, I was extremely tired and fell asleep at 10:30pm, which is quite early for me. I slept through until 7:30am but I was so tired I felt like I didn’t sleep at all.
I felt exhausted all morning. I ate cereal for breakfast, caffeinated tea after, then soup for lunch. At 1:30 I went for a 10k run on the treadmill. I showered and went to the school at 3:00 to help setup for the PAC fundraiser. While setting up, I was helping a parent move tables. I noticed that it took all of the energy I had and I was barely able to lift the table off the ground. There were many student and parent volunteers in the gym so I went into the hall and sat down behind the door so I would be out of the way.
I don’t know how long I was out, but it was much longer than the previous episodes. The custodian walked by me a couple times, as well as a student, and a few other staff members. A few minutes later, there was a small group around me discussing the idea of calling 9-1-1. I tried to communicate but my eyes just started to water. One of the parents who knew of my condition came over and informed the others that she thought I was okay. Before long, someone found my daughter and everyone seemed to be quite relieved when she arrived and informed them that this was “normal”.
Shortly after, I felt myself coming out of it. I was able to take a few deep breathes, then I was able to speak. It took a bit longer before I was able to to move my feet. Once I had my energy back, I got up and went right back to work helping sort the donations.
It is embarrassing when these episodes happen in public. I forget how scary it can be for those who are not aware of my condition. Even those who know of it can feel uneasy until they have seen me in an episode and know what to expect.
The Early Stages
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The First Episode
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Royal Columbian Hospital
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Searching for a Diagnosis
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Living with Episodes
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