See this lady?
I want to be this lady again. Happy. Cheerful. Full of life. Not tired and exhausted and overwhelmed.
Ever since we’ve returned from our vacation every day has been a challenge. I was diagnosed with Labyrinthitis shortly after we arrived home from our trip to Vancouver Island. Labyrinthitis basically makes you feel dizzy or like you just got off of a carnival ride for several weeks. After about 2 1/2 weeks of feeling like that and walking like a drunk, having headaches and feeling a general sense of malaise and fatigue, I began feeling less like I was on a ship a little each day. One day the feeling was pretty much gone. It still bothered me at night which is quite normal with labyrinthitis. It’s much worse in the dark.
Many people who get labyrinthitis end up with a panic disorder and feeling very depressed. Thankfully, I managed to never have a full blown panic attack. I came quite close the first few nights of dealing with it but once I had a diagnosis and wasn’t as afraid, I was able to keep myself from panicking too much. I did cry a lot. It’s exhausting feeling that way for so long. I was extremely happy when the yucky feeling of being on a wild sea in a dingy began to subside. Over the course of that time I had lost a lot of sleep. It’s pretty hard to sleep when your own bed feels like it’s bobbing up and down on the waves of the ocean. It’s pretty hard to sleep when you close your eyes and your eyeballs feel like they are rolling around like marbles tied to rubber bands in your head. It doesn’t quite feel restful.
Just over two weeks ago, just as the vertigo began to really fade I started having terrible sleep problems. When I was falling asleep or coming out of sleep I began having all sorts of jerks and jolts and tremors. The first time it happened it woke me up about an hour and a half into my sleep. My arms were tremoring and it felt like my brain was shaking. My eyes were shaking and everything wouldn’t stop shaking. It lasted for about 20-30 seconds and finally stopped leaving me feeling a strange buzzy fuzzy sensation in my arms and head. I felt exhausted and my body felt weak and sore.
It happened more and more every night until I was getting no sleep at all. I tried taking a half a sleeping pill one night. It didn’t work at all. I had these shakes and jerks and tremors every time my body began to drift off to sleep and if I managed finally to actually fall all the way into sleep, the tremors would wake me back up not long after. My doctor had given me a prescription for sleeping pills last November as I often deal with insomnia and have for the past six years. I was to take 1/2 a pill as needed. The bottle originally came with about 10-12 pills and I probably used a half a pill about twice a month. I don’t like taking pills to sleep but would use them when I was desperate. When all of this started two weeks ago, I still had two whole pills left in that bottle. Normally half a pill was more than enough to knock me out cold until morning. I began to worry that this wasn’t even touching my sleep issues.
After a few days of this I went to the walk-in clinic (my own doctor was on rotation at the hospital delivering babies) and he prescribed Ativan. I remembered taking Ativan once before when I was in the hospital for preterm labor with my fourth baby. I had had so little sleep, my Grandmother had just died, I was exhausted and sad and knew the baby was going to come early. They sent me home with Ativan and I slept for twenty-four hours with one hour up to eat and shower somewhere in the middle. Needless to say, when he prescribed this I thought surely it would calm me down (figuring this was maybe just nerves or something) and knock me out. It did nothing. I was up all night again with the same problems.
I’m so tired now that I have no insomnia problems. I am falling right to sleep. But as I am going from awake to asleep my body begins to have tics and twitches and jerks, sometimes violently. Occasionally I would practically be completely off the bed. My husband told me I was up on my elbows with some of these jolts. Also, as I begin to drift off every sound becomes amplified several hundred times. The fridge would click and I would almost leap off the couch (if that’s where I was falling asleep), my husband would move his arm and I would gasp and jump. Then if I manage to get passed all of the jerks and jolts I would feel like the descent into sleep was a terrible cliff rather than the incline that it should be. I would suddenly get a dull headache around my neck and above my ears and a strange helpless yucky feeling of warmth (hard to explain) would engulf my head and my body, as if everything was closing in. I would sometimes have an electrical shock feeling going through my head…. I knew it was happening but couldn’t get out of it on purpose. I occasionally would then have a jerk and gasp and wake fully again only to repeat the process. But if I didn’t jerk out of it I would usually end up shaking and tremoring again. The nights where this went on all night long I would finally be so exhausted from it by around 6:30 or 7 in the morning that I would manage to sleep past the last of the episodes and be awoken to the shaking head and eyes again an hour and a half later.
I began to feel like these were seizures of some sort. After about 4 nights of this I went to the ER but they made me feel pretty bad for showing up there as I clearly wasn’t a trauma case. I didn’t know what else to do. The walk-in clinic doctor had told me to go there if nothing was able to make me sleep. I told the ER doctor that I felt like I must be having seizures or something but he said, “I can guarantee you that’s not what it is.” I didn’t know how he could guarantee such a thing just by looking at me. They sent me home and told me to increase my sleeping pill to a whole pill.
I went home and did that. Slept all day and took another one for the night and slept all night. I made an appointment to see my regular doctor. I can hardly remember that appointment because there were so many sleepless nights between then and now. I basically wanted to catch her up on what had been going on with me, that I had been diagnosed with Labyrinthitis and that my sleep was now terribly disturbed beyond anything I had ever experienced, explaining a little of what was happening. But she did not seem to listen to my concerns that I might be having seizures. I don’t want it to be seizures but I can’t explain what else these might be and I just wanted someone to listen to me and believe what I was saying about my own body. I know from friends that have epilepsy that sleep deprivation will set off seizures big time. I had obviously endured a lot of sleep deprivation with the labyrinthitis so I thought maybe this was it.
Over the week I began reading up on sleep issues. I got books from the library and looked up some things on the internet. I was becoming desperate for answers. I spent many nights crying both out of desperation and some fear as well. I was just plain exhausted.
I went back to my doctor for a follow up appointment where she again appeared to not be listening to me. I was saying what was happening, that it felt like I was having seizures and how it wasn’t just run of the mill insomnia. My husband was there telling her what I looked like as I was falling asleep and waking up. I told her about the shaking eyes, head, arms and violent jerks. She told me that I needed to change my preconceived notions about sleep and that I needed to just “think differently about sleep.” She also noted that I was anxious and might need to be on anti-depressants for that. Yes, I was anxious. Something was wrong and I knew it and no one was listening to me. She prescribed a new sleeping pill that would maybe also help to calm my jerks and spasms. She maybe thought I was having some restless leg syndrome. She told me to take 1/2 of my old sleeping pill (the one that used to knock me out cold) and the new one as well. I don’t like taking any but I was planning to heed her instructions.
When we went to pick up the prescription the first thing the pharmacist said was, “Now you know you are not supposed to take this with any other sleep aide right?” I explained what my doctor had instructed and that I was planning to do as she had said but the pharmacist reasoned that I had only been on the old pill for a week and was not likely to experience withdrawal symptoms after such a short run on it. She recommended not taking both at once. Figuring that her specialty was drug interactions and that I don’t like taking sleeping pills let alone mixing two varieties against a pharmacist’s advice, I went with her wisdom and took only the new pill. It did nothing for me. I was up all night again with the shakes and tremors and jerks upon falling off to sleep and upon waking up (for the two intervals totaling 1 1/2 hours of sleep that I managed to get early in the morning).
My husband called my doctor in the morning and said that we really needed to come in again. He had lost a lot of sleep because of me. He was up in the morning looking up information on a certain type of seizure that matched the description of what I was going through exactly. We also thought back to before I was sick. I have had strange sleep issues that were associated with my sleep cycle for the last four years. Strange repetitive movements and phrases that I would wake up to do (usually in what appeared to be a panic). I wouldn’t be aware of it for about 30 seconds, then I would come-to and think how bizarre it was that I did and said the exact same thing as the night before and then would promptly fall back asleep. I had always sort of figured these were sleep terrors but the more I read about those, they didn’t match up. Sleep terrors tend to last around 10 minutes and the person usually doesn’t remember them. And the person might do things like jumping through windows to escape danger. Mine were nothing like that and I could remember the last few seconds of it and my husband calming me down and going back to sleep afterward.
They would come and go. They would happen at the same exact time every single night for a period of nights and then they wouldn’t happen again for a while. Then they would happen again (but they would be different than the last time I had them but always the same for several nights in a row.) They might be as weird as me getting up and running to the door and saying something like, “He’s only TWO!” and being very panicky, then figuring out what I was doing and getting back in bed or they would be me waking up to a strange sensation in my arms (either a shaky/buzzy feeling or I would wake up with my hands in fists), saying something about it and then coming-to and saying, “Weird…. I said exactly the same thing last night. I’m freakin’ myself out.” I would know that I had just said it but before these things happened I couldn’t make them not happen. Because these things weren’t constant and they didn’t assail me all night long I didn’t think of them as major problems. I’m a busy mom and just added that to the list of things I’d talk to my doctor next time I happened to go in. It only became a major problem after I had become sick a month ago. My husband had read that some seizures can look exactly like what I was experiencing. Not saying that’s what it IS for sure but the torment of each night lead us to want our doctor to start the process of ruling such things out.
So we went back to the doctor that afternoon. I was in awful shape, having not slept in over 40 hours for the fifth time in two weeks. Several of the nights over that two weeks I had tried various sleep-aides, none of which worked. Taking a whole sleeping pill of the variety my doctor had prescribed the year before was the only thing that got me over the hump of the shakes and jerks and tremors. But I could still feel them happening as I fell asleep and woke up… I was just too zonked for them to keep me from falling asleep. Knowing that these things were still happening, I wasn’t going to be satisfied with just the band-aid approach of taking sleeping pills for an indefinite period of time. My husband and I both felt that we wanted to see a neurologist. Seeing a specialist here in Canada can be quite difficult. It seems like you have to endure some sort of trauma to be referred to one.
The doctor first asked if I had mixed the two sleeping pills as she had directed. I told her that the pharmacist had recommended against it. She immediately flew into a rage that we believed the pharmacist over her. She yelled at us that if she had no credibility with us we really just needed to find another doctor. She would not let us complete a single sentence. In one breath she was angry that we went to a walk-in clinic (even though we did that when she was on vacation or on call at the hospital and her answering machine said to go to a walk-in clinic) and in the next breath was telling us that she is overwhelmed and has 3,000 patients and is about to take a stress leave…. and in the next breath she was angry that I had not been coming in regularly for my sleep problems if they were so bad. I was crying and saying that I’m a busy mom and don’t rush off to the doctor when I don’t feel I really need to but now after a fairly awful illness I was definitely in need of a doctor. Yes, it’s probably my fault for neglecting myself in this way for so long but it was surely nothing personal against her. She has been such a wonderful doctor for so long. I love her. I have adored her, truly. But it’s clear that she is under way too much stress. I blame the system where the government limits the number of doctors there are so that there are never too many. With too many, they could not afford to pay them enough. But with less than “too many” there aren’t enough which means patients have a hard time finding doctors and doctors are overwhelmed with patients. She was so upset that when my husband suggested that the system was broken and was hurting her she lashed out and said it was not in fact broken but it was because of people like us that there were problems. I must confess, I would never in my wildest imagination have figured on being fired by my doctor. We’ve hardly been to see her in the last year but a handful of times. I’d hardly lump us into the “difficult patient” category.
She was angry that we had done any research on whatever is wrong with me. I must confess, I don’t understand how a system can encourage you to “be your own advocate” and “take responsibility for your own health” but then scream and yell at you and begrudgingly refer you to a specialist only when you beg and plead and then throw the scrip pad down on the counter in anger. She is under a terrible amount of stress. She is a wonderful, wonderful person who has just been pushed to the limit. But it’s hard not to feel hurt when you are attacked personally in your weakest moment. We were told to find a new doctor.
BUT!!! But thankfully she did go ahead and refer me both to a sleep clinic (which we will have to pay for out of pocket as it is not covered by the govt. plan or hopefully our extended insurance will cover part of it) and to an urgent neurology clinic at the hospital. She discouraged us with the fact that they would probably not accept me because I probably wasn’t really an urgent case but she referred me anyways. I don’t know what’s wrong here. I have only suspicions. I will be glad if my suspicions are wrong (though I’m not sure where that would leave me either!) but I just want someone to begin looking for answers and causes instead of handing me a sleeping pill and telling me to just think differently about sleep. I’ve had insomnia off an on for 6 years now… I can handle that. But this is a different animal altogether!
The elders of our church came and prayed with us that evening. They prayed not just for me but for my doctor. I do pray for her. She hurt me. She hurt my husband. My kids were just in utter disbelief when they heard how she treated us and what she had said. She treated us poorly and there is no excuse but I know that she has just been pushed to the brink by the demands that are placed upon her. I don’t know how she’s managed to keep up this long. The elders also prayed that I would get into the neurology clinic and the sleep clinic.
And I’m so thankful that God has honored those requests and as of today I have two appointments booked for next week, one consult at the neurology clinic and one consult at the sleep clinic. I also was able to secure a new family doctor as there is a new one not far from us that arrived in town on Sept. 1st and was taking new patients. I called today and the available spots were already quite slim because so many people need family doctors but thankfully we got in! So, now we are just praying that God will guide the doctors and help us to get to the bottom of whatever is causing these problems at night for me. Right now I am managing to get a fairly decent night’s sleep with the full sleeping pill. But I want the actual problem to be addressed, not just the symptoms.
Early last week we decided that because of my health we needed to put some of the boys in school. My oldest is still homeschooling as he is very independent and doesn’t require a huge amount of one on one with me. I help him as needed and give him encouragement. The middle two are now in school down the street and they are enjoying themselves. I didn’t want to do it but I knew I was just not up for the task this year. I am tired. Exhausted. And I want them to have more than 1/4 of a mother as a teacher! And as for next year… we’ll think about that next Summer! My youngest is almost 4 and I am enjoying spending a little more time with him now. His big brother loves teaching him how to sound out letters and do little school papers so he is enjoying this time as well.
Please pray that the doctors can get me figured out quickly and that whatever is causing these problems with my sleep can be easily resolved or treated. We are traveling in December for my brother’s wedding and Christmas and I really want to be able to fully enjoy my time there with the family.
So that is the update on how things are going now. And that is why I have been quite scarce on here. I want to be the regular me again.