Royal Columbian Hospital
Room 327 Bed 3
Tuesday May 5, 2015
At 5:00am a nurse came in and gave me liquid potassium in apple juice. At 7:00am I woke up to a nurse, taking my vitals. I also had more blood work done. Everything was normal.
Around 8:30am I had another episode just before my husband arrived. Shortly after he arrived our nurse informed us that the MRI department scheduled us in a 2:00pm but there was confusion. As an outpatient a scan of the brain was requested, but as an inpatient a scan of the spine was requested. They would not combine the two requests. Our nurse spent the morning trying to contact a doctor so both scans could be done at the same time. It took her quite a while but she finally got a hold of a hospitalist who authorized the request.
Just before 1:00pm I got up to go to the bathroom. When I got back I felt really tired and had an episode. I tried to stay awake and became dizzy trying to open my eyes. I eventually just let myself relax. About 10 minutes later I started to come out of it. A minute later I could move my hands and I whispered “I’m scared”. I had tears in my eyes. It took 30 minutes before I could move my legs and arms but I was physically exhausted. My fingers could move but they were weak.
I went for the MRI at 2:00pm. There was a 97 year old lady who had been waiting for 3 years to get her MRI to investigate an ear problem. After waiting 30 minutes I was brought into a second room with an MRI and it took approximately 45 minutes. I only moved once when I fell asleep but I didn’t have any episodes. They were able to get all the images they needed.
I did have a small episode around 5:00, which lasted about 5 minutes. Then at 6:30 I had one that lasted only 2 minutes. At 9:30pm I had one last episode that lasted 20 minutes. When I came out of it my husband came into the bed with me and did not leave my side all night.
I had a whiteboard in my room that wasn’t being used. Tavis decided to use it to count the days we would be in the hospital. I arrived on Cinco de Mayo, so he used that as our starting point.
Daily Episodes
Tests & Lab Results:
- Potassium Blood Test: Normal
- ECG: Normal
- MRI of brain and Spine: Normal
Possible Diagnosis:
- Hypokalemic Periodic Paralysis
- Multiple Sclerosis
- Viral Infection
- Stress
All tests are coming back normal.
Daily Episodes
Symptoms:
- extreme tiredness
- little to no energy
- ability to speak within a minute
- ability to open eyes
- episodes lasting from 5-20 minutes
- happening more frequently
Diagnosis:
- unknown
Medication:
- none
Tests & Lab Results:
- EEG: Normal
- CT with contrast: Normal
- Alkalines: Normal
- Calcium: Normal
- Magnesium: Normal
- Phosphorus: Normal
- Thyroid: Normal
The episodes are now lasting approximately 5 minutes. I had another at 5:00, 5:10, 5:40, 5:45 (lasted 15 minutes), 7:10, 7:20, 8:10, 8:40, 9:00, and 9:15.
Cinco de Mayo +1
Tuesday May 5, 2015
We woke up at 6:30am. I didn’t think I had any episodes through the night but shortly after I fell into one that lasted almost 15 minutes.
Just before 8:30am I felt another one coming on. I called my husband and he observed me. I could still speak lightly and move for another 3 or 4 minutes before I fell into a full episode. About 5 minutes later I could speak again but when the nurse came in I still couldn’t move. She took my vitals. About 15 minutes later I was able to move again. I had an annoying cough that scared me because I was worried I wouldn’t be able to breathe with the phlegm in my throat.
I had another episode at 10:20am when my youngest son came to visit. He lied down next to me and lowered my bed. I was able to speak after 2 minutes but it took another 10 minutes before I could move my arms and legs.
My husband went home around noon to get some sleep and returned around 3:30. While he was gone I had a 10-minute episode around 12:30. I had another one around 2:00 and then went in for my EEG around 2:15. During the EEG I had a complete episode which lasted around 5-10 minutes. Shortly after I got back my husband was there with coffee for two of my roommates.
At 3:15 we had just finished playing a board game on the tablet and I had another 2 episodes back to back. The first one lasted only a few minutes and I could move after 10 minutes. Then I went back out and was able to move again after 5 minutes.
An hour later I was told I was going for a CT of my organs (this time with contrast). The nurse tried to put a second IV in me but failed. I ended up having a panic attack (sweating, nausea, shaking). It could have been due to the tensor on my arm being too tight. In the end we did not get another one in and the CT technician said the small one already in was sufficient.
The episodes are now lasting approximately 5 minutes. I had another at 5:00, 5:10, 5:40, 5:45 (lasted 15 minutes), 7:10, 7:20, 8:10, 8:40, 9:00, and 9:15.
At 9:30 I got up to go to the bathroom and collapsed just outside the door. My husband caught me and I was able to get up after a few minutes, go pee, then went to bed and fell asleep for the night.
My husband crawled into bed with me and slept by my side all night again.
Cinco de Mayo +2
Thursday May 7, 2015
My first episode of the day was around 8:30am when I tried to sit up. I went out but was able to talk and move almost immediately. I went out again 2 minutes later but was able to move again within minutes. After 5 minutes I had full control of my body again. We were starting to think that movement was causing the episodes.
At 11:00am I was talking to the school Secretary to let the kids teachers know that I was okay but still in the hospital. Part way through the conversation I went out. It took 3 minutes before I could open my eyes or speak. I tried to fight it again and it took 10 minutes to regain full movement.
My husband went home to rest around noon and my Mom stayed with me. I had another short episode at 2:15. The doctor came at 2:30 with CT results and all tests so far have come back normal. I have 2 stones in my gall bladder but that is all that was found.
Around 3:00pm I had the holter monitor strapped to me. It is like the ECG but monitors over 24 hour period. At 3:10 I had an episode and another one at 3:15 that lasted 10 minutes. At 3:50 I had another episode that lasted less than a minute and then went out again for 5 minutes. I had another episode at 3:55 which lasted 20 minutes. As I was coming out of it I had more blood work done to test electrolytes.
My brother came for a visit today as well. It was great to see him even though it was a short visit.
At 6:30 I had 2 five-minute episodes and again at 7:20. At 8:30 we were playing another game on the tablet when I had another 2 episodes lasting about 5 minutes each. My husband stayed until 9:00pm and then decided to go home and get some sleep. My roommates said they would look after me while while my husband was away.
Daily Episodes
Tests & Lab Results:
- 24hr Holter Test: Normal
- Electrolytes blood work: Normal
Possible Diagnosis:
- Hypokalemic Periodic Paralysis
- Multiple Sclerosis
- Electrolyte imbalance
- Lyme Disease
- Mold
- Viral Infection
- Stress
- Sleep Paralysis
- Cataplexy
- Conversion Disorder
We were starting to think that movement was causing the episodes.
Daily Episodes
Symptoms:
- extreme tiredness
- little to no energy
- ability to speak within a minute
- ability to open eyes
- episodes lasting from 5-20 minutes
- happening more frequently
Diagnosis:
- unknown
Medication:
- sleeping pills
Tests & Lab Results:
- Sleeping Pill: Made me worse
- Waiting for Spinal Tap
“All test results have come back normal. I recommend seeing a psychiatrist. The only test really left from a medical point is the lumbar puncture to rule out any infections.”
Cinco de Mayo +3
Friday May 8, 2015
This morning the hospitalist came to check on me. He reported that all test results from the hospital have come back normal. He let me know that I would see a psychiatrist and that the only test really left from a medical point is the lumbar puncture to rule out any infections in my body. We stopped recording every episode since the doctors didn’t seem too interested in them.
Later that morning my husband came to visit. While he was in the room a psychiatrist came to see us. She went over my history and looked for any signs of Depression or Stress to report to her team. She said there really wasn’t much that she could tell but another thing they are looking at is Cataplexy which is a sleep related disorder.
After school the kids came to visit briefly on their way to Vancouver Island. It was great to see them. I had an episode while they were at the hospital but by now we had determined that by resting I was able to minimize the number of episodes I was having.
Our neurologist came out to visit after 8:00pm. He told me he wanted to do a lumbar puncture to rule out infection. We were hoping to have the test early next week.
That night I took 1/2 a sleeping pill to help rule out sleep disorders. The next morning I woke up at 6:30, then 7:30, then 9:30. I was extremely tired all morning and which was most likely due to the sleeping pill.
I had a new nurse who helped me get out of bed on my own and she stayed with me for 30 minutes while I waited through the episodes. It was the first time a nurse asked me what I wanted to do and helped me do it. I walked to the bathroom to brush my teeth and clean up. After I sat by the window to try and keep myself upright. I had several episodes but I pushed through.
Hi everyone, I’ve had a lot of text messages and calls. I figured its time for a Facebook message. I am totally fine and in great hands. I have had about a hundred tests done to me over the past 5 days and so far everything is coming back normal. I am totally healthy and fit. My heart, lungs, and brain are perfectly normal. I am in absolutely no pain and have no memory loss. I just fall into a state of paralysis which tends to happen if I move too much but i am fully aware, awake, and my vitals are totally normal during it. I just can’t open my eyes, move, or talk for a few minutes. They tend to only last a few minutes and after about 20 minutes I have full use of my arms and legs again. I promise once I have been diagnosed I will post here so you don’t have to call my family looking for answers 🙂 In the meantime, please don’t worry about me. I am totally fine, happy, and cheerful. And I have every Garth Brooks album on my phone so I have more than enough music to keep me company 😛
Cinco de Mayo +4
Saturday May 9, 2015
This morning I woke up at 6:30am, then 7:30am, then 9:30am. I was extremely tired all morning and Feida thought it was from the sleeping pill I took last night.
Today, I had a new nurse who helped me fet out of bed on my own and she stayed with me for 30 minutes while I waited through the episodes. For the first time, a nurse asked me what I wanted to do, then she helped me achieve my goal. I walked to the bathroom to brush my teeth and clean up. It took a long time because I had to wait through episodes, but it felt like an accomplishment.
After, I sat by the window to try and keep myself upright. I had several episodes, but I pushed through.
Fran’s husband came today with her electric wheelchair, so Fran let me borrow her hospital chair. It was great because Tavis was able to wheel me outside to the garden. It was my first time out of the room.
Ted and Esther came to visit today around 2:45pm. It was great to see them. I had a few episodes but only when I moved suddenly for hugs or to grab something. They spoiled me!
Later that night, Jeff and Kena came to visit. It was great to have company. They brought ice cream and crochet hooks and yarn (which later came in very handy). I also felt a lot better for Tavis who had someone to talk to. Jeff and Kena seemed to make Tavis relax. Tavis stayed a bit longer than went home just before 10:30pm. I took 1/4 of a sleeping pill and went to bed. It was my worst night at the hospital and the last night I took a sleeping pill.
Daily Episodes
I took 1/4 piece of a sleeping pill before bed. I woke up at 2:30am after having a strange nightmare about a legoman on the hospital floor staring at me. I can’t explain it, but it terrified me. When I woke up I was in an episode and couldn’t move.
Femida called a nurse, but ours was on a break so the one who came didn’t know about my condition. She told Femida I was just sleeping but Femilda didn’t believe her. She demanded they hook me up to oxygen. She got herself into her wheelchair and sat next to me until I calmed down and gained movement. Femida stayed with me for a bit longer before going back to bed. I thanked her for taking carre of me.
That was the end of my sleeping pill treatment.
Daily Episodes
Cinco de Mayo +5
Sunday May 10, 2015
Today was Mother’s Day! Tavis brought me a wonderful Mother’s Day gift, a new Starbucks travel mug and 2 tickets to Kenny Chesney’s concert in June!
Later that day, we went back outside into the garden. It was a quiet and relaxing day.
My favourite part was when the kids came for dinner. They gave me lots of cards and 3 beautiful plants for my room. We enjoyed Subway sandwiches in the garden. It was a short visit, but the highlight of my weekend.
Cinco de Mayo +6
Monday May 11, 2015
Tavis went to work this morning. I got to know my roomates well and we spent the day telling each other stories about our lives. Femida thought that I had lupus based on my history as a child. I always had crazy infections that had to be lanced, and unexplained stomach issues, and trips to the hospital where they never found anything wrong with me.
Today I also started physiotherapy. I had to walk for 20 minutes around the ward with a wheelchair right behind me to catch me when I fell. At first I needed to use the wheelchair quite a bit, but I was slowly able to walk further without falling.
After dinner, we were pleasantly surprised when Tavis came with his projectorfrom work. We projected it onto the window blinds and it worked great! I introduced my roomates to Disney’s Big Hero 6.
Thus began evening movie nights in Room 327.
Daily Episodes
Possible Diagnosis:
- Hypokalemic Periodic Paralysis
- Multiple Sclerosis
- Electrolyte imbalance
- Lyme Disease
- Mold
- Viral Infection
- Stress
- Sleep Paralysis
- Cataplexy
- Conversion Disorder
- Lupus
Daily Episodes
Cinco de Mayo +7
Tuesday May 12, 2015
Well, I did not get my LP today. Maybe tomorrow. There are people in this hospital who are more sick than I am who need answers quickly. Lastnight, Tavis brought pizza and a movie. We watched Big Hero 6 on the blinds and I introduced my roomates to a new genre of movies 
. It was the highlight of my day. I also some visitors come and keep me company throughout the day. I am also in queue for sleep analysis or something which will be the next step if the LP comes back normal. I will update again tomorrow.
Cinco de Mayo +8
Wednesday May 13, 2015
Tonight the neurologist got tired of waiting for the LP. He came in at 8:00pm and attempted to do it himself. Unfortunately, he just wasn’t able to get the right spot.
After 4 failed attempts he decided to stop and wait for the lumbar puncture under fluoroscopy. We hoped it would be done before the end of the week as that was the final test before I could be deemed physically healthy and released from the hospital.
Daily Episodes
Daily Episodes
Tests & Lab Results:
- LP spinal tap: still waiting for results
New Symptoms:
- sharp chest pain
- no trouble breathing, just constant pain
- blood pressure, temperature, and heart rate not affected
Cinco de Mayo +9
Thursday May 14, 2015
At 10:00am I finally received word that my LP was scheduled for 11:30am. At 10:30am I had another episode. The Porter came to get me at 11:15 and I was transported downstairs. There was a bit of a wait but I was brought in at 11:55.
The “5 minute procedure” ended up taking almost an hour. Even under the imagery it took 2 tries. I had an episode during the procedure. The first try they hit a nerve which shot my left leg out and was quite painful. The second attempt was a success and it took less than 10 minutes to extract the fluid. I was back up in my bed by 1:00pm with instructions to stay laying down for 1 hour.
At 2:00pm I got the OK to leave the hospital on a day pass and attend the kids’ student led conferences. My husband came to pick me up at 3:00 and we surprised the kids 🙂
I had 3 episodes during the 2 hours I was at the school. One time I went down in the middle of the hallway on our way to the computer lab. I think I pushed myself too hard but it was great to see the kids and all the work they have done this year. Then we went home for a quick dinner.
At 6:00pm we went back to the hospital. My bed had been moved out into the hall. I was now placed directly across from the nurse’s station.
That night I played Candy Crush while laying on my stomach in my bed. Then I moved to my back to sleep. I must have pinched something because I suddenly got a sharp pain in my chest. It felt as though someone was squeezing my lungs and would not let go. It hurt as bad as a contraction, but it seemed to last a long time. I was able to get my nurse’s attention and she took my vitals. Everything appeared alright so she held my hand until the pain started to go away. It lasted about 5 minutes.
After that I went into another episode of paralysis before finally getting some rest.
I was just given the bad news… Tonight they are moving me into the hall. Yes, that’s right… I will become a hallway baby. They have done all they can do here for me so I might see about going home and waiting for the results there.
My day pass was approved. I am on my way to student-led conferences. I have 3 hours of freedom. They even took out my IV thingy. I just have to make it 3 hours without any issues. I have had 2 episodes already, so I should be good!
Well, I had such a wonderful visit with the kids. It was so nice for them to show all of their work today. I only had 3 episodes, one of which left me flat our in the hallway for a few minutes, which was quite embarrassing. It is my life right now though so I guess I had better get used to it.
I got back from my day pass ad there was already someone new in my bed. I couldn’t believe where they moved me… directly in from of the nursing station. Her is my view. Oh well, Tavs and I visited with our old roomies for a while before I made some phone calls and wished everyone good night. Even Crazy Karen, who always greets me with a huge smile, and I can’t get away without a hug. I also wished “New lady” goodnight, but I don’t think she appreciated the impersonal goodnight from a stranger. Oh well, it is the thought that counts.
As I lie here in bed, I look forward to going home, possibly tomorrow. I am kicking myself for bringin the headphones home. No garth Brooks tonight. Curses!
Cinco de Mayo +10
Friday May 15, 2015
I didn’t have a very restful sleep in the hallway, but I did manage get some rest. I was mostly excited to go home in the morning. When I got up, I ate breakfast and got dressed. Then I went into my old room to meet my roomates. Fran and I went down to Time Hortons for a hot chocolate and a donut. When I got upstairs, I waited at my bed to see the psychiatrists and my doctor.
The psychiatrists gave me some brochures about psychologists in the area to contact for support. Then I got their clearance to leave. Later in the afternoon, Dr. Akbar came to visit and he too cleared me by 1:00pm. I packed my stuff and waited for Tavis to come get me.
All of the tests came back negative and doctors had no idea what was causing the episodes. They were still happening but it didn’t seem to be affecting my health.
I was released to the care of my husband and family. I was also told not to come back to the hospital unless my symptoms got worse.
Tavis asked for advice on getting help as I was clearly unable to take care of myself, let alone my kids. The only suggestion they had was to get a nanny, as my condition was not a medical issue.
At least my home would more comfortable than being in the hospital.
I’ve got the okay to go home!!! Spinal fluid came back negative for all bad things which means I have a clean bill of health! Psychiatrists recommend that I seek therapy to help determine if I have stresses in my life that are causing these episodes. I also am on the list for sleep therapy. The only strings attached is that I need to find a babysitter for myself and the kids until the episodes stop 
No driving, no biking, no cooking, no cleaning, no playing in the tree fort, and preferably no being home alone. These are my restrictions for now. But I get to go home! 
Daily Episodes
New Symptoms:
- stiffness in big toe on left foot
- shortness of breath
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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