So the new med seems to be helping….I haven’t quite got it settled in me yet so I’m finding hard to judge but I’m definitely more awake taking them. They seem to take about 1 hour to kick in and then I feel awake….not wired or jittery/anxious…for about four hours. After that I nosedive back into tired and fight to keep myself awake but if I take a second dose the same happens again. Today, I’m going to take three doses, metered out, and see if I can avoid the crash but they are definitely helping some, which is fantastic.
The appointment on Friday was actually really good. The doctor was efficient, kind and very interested in helping me get my quality of life back. She went through all the results and showed me baseline results against my own to help me understand. All of the blood work came back as expected – fairly normal. The cardiac testing, oxygen saturation and other diagnostics came back well within normal ranges as well, which I was also expecting. The sleep study and latency testing showed a very disturbed sleep cycle where I nearly instantly reach REM sleep (normal range is after 90 min of light sleep) and stay there for a large portion of my cycle. I do get to deep sleep, the most restful, healing phase of sleep, but I spend between 2 seconds to 2 minutes there before bouncing right back into light sleep which quickly progresses to REM again. (This is all consistent with the studies I had as a child). I don’t actually wake up, which is good I think…..and shows that it’s not the pain in my spine that is interrupting my sleep so I don’t have to up any of the pain meds for now (yay!).
In the end, her preliminary diagnosis is narcolepsy as I clearly have most of the markers aside from the cataplexy (when a sudden emotion like surprise causes a ‘short’ in your nervous system and you collapse – the symptom most people recognize in conjunction with narcolepsy). I didn’t think I’d had any episodes of sleep paralysis (where you wake but cannot move for a short period of time – some sort of miscommunication between your brain and your body) – but after describing some of the episodes I have had in my adult years where I would feel like I was stuck in a very vivid dream had the doc nodding and checking things off in her notes. The two main markers I clearly have are the excessive daytime sleepiness and the rapid descent to REM upon falling asleep.
Because I can pretty much point to these sorts of symptoms all my life, I asked about why it might be worse now than it was when I was younger. She said that things like menopause can trigger differences in just about any disorder of this nature and my GP noted in the referral that I started with the peri-menopause crap right at about the same time I started with the consistent overwhelming exhaustion. The other thing she said that I found interesting but did not comment on (to her) was that sometimes psychological trauma will trigger sleep disorders. The dreams have never really perplexed me, particularly that they began in childhood, because of the traumas that happened in that phase of my life. I actually thought the dreams were mainly a part of the PTSD…I mean, how much sense does that make? Emotions and memories stored in jagged strips in my head that don’t process correctly when I look directly at them would be very likely to process through my subconscious mind right? Makes sense to me anyway and it appears that the two really can go hand in hand.
So what now? Now I try this stimulant to see if it makes me feel any better for a month and then, if needed, add a sleep med. The clinic is going to follow me until we have some sort of treatment routine that works so I feel like I’m in pretty good hands. Now it’s a matter of coping and shifting things around a bit to make it easier and I’ll be set.
I finally feel like I might be able to get things back under some sort of control.
Depression? Check. I have pockets that come and go but, on the whole, I’m managing to keep myself from sinking too low.
Anxiety? Check. I’ve been great on that front for a while now. The only thing that seems to set me off is going to a very busy place like the farmers market on weekends. I can only do so long before I start feeling like I need to fight my way out, biting, kicking and wind milling my arms to bash through perfect strangers to get some air. Maybe one panic attack on Friday with the puking, sweating, violent shaking, heart pounding and head screaming but it might also have been one of the headaches I get from the mess in my neck and spine.
PTSD – Check – no actual flashbacks for years now. Some behaviours are still with me and likely always will be but I’ve learned to slow the self-sabotaging talk cycle when they start and I seem to be able to bounce back within a day or two at worst. The rest of the related behaviours and thought patterns are just part of who I am and I will always be working to support myself through them.
Arthritis/chronic pain – Check. I’m getting very good at living with this crap and it is only getting to me once in a while, at which point I will immediately take the required meds, grab a cold pack and let my body rest until the worst of it passes. I haven’t called in sick from the pain once in the last 8 months and I’m proud of it. I’m also not suffering and constantly thinking about it or how to fix it. Pain follows me everywhere now but I’ve come to accept her as part of my life and I find myself much less burdened.
Sleep – well….I think I’m on my way to having this in check too. I’m excited. I feel like there’s a chance to see the old me again and it feels like being released from prison. I can’t think of anything I would have wanted more.
I’ve gotta say….that one was definitely well worth the wait. \(^V^)/
So the outcome of the appointment was pretty good. No respiratory issues at all, which was a big *whew*.
The study showed a substantial sleep disturbance, as expected. The doc thinks narcolepsy is what I’m looking at as I have two of the main markers: excessive daytime sleepiness and a very rapid transition into REM cycle sleep. Most people take about 90 minutes to enter REM and I would drop into within seconds of falling asleep. I do not have the cataplexy or paralysis that occurs often with narcolepsy but she said that the disorder presents differently in people. She’s treating me for naecolepsy and I have weekly follow up appts to see how the medication is working.
I’ll wrote more in depth info later as I’m out running errands now but wanted you guys to know I was ok.
Stay tuned. Thanks for all the love and support my wonderful blog land friends. Xox
Well I knew that would happen. Dayne just called. He’s got two emergency call outs both two hours away from here (in opposite directions) and he’s going to miss my appointment. I tried to let him know I wasn’t mad and he kept apologizing and telling me he didn’t want to ‘waste’ an entire vacation day on this, which is why he didn’t book it off, he was hoping things would just work out. Of course, they didn’t. He said he’s going to rush through the work and try to get there but I said not to bother. I don’t need someone sitting there with me…..I need someone to sit with me while I wait so I don’t freak out….him rushing in at the last moment won’t help. Years ago I had an MRI and I was nervous….I cope with medical testing well on the whole but that stupid machine makes me feel like I’m in a coffin getting buried alive. We have the open air MR’s here but they use them for emergencies and children …. trust me, I tried lol. Anyway, he was late and I was frantic by the time he arrived for that one which set him off immediately. He started getting nasty with people and in the few minutes we had to wait, he wound me up so tight I could barely breathe. I’ll do fine with this on my own. The only thing I’m worried about is that they’ll find nothing and I’ll get that blank stare from the physician….that I’ll go home and no one will be willing to help me with this anymore. My GP will stop giving me stimulants because, if there’s nothing to treat, why treat it? and I’ll start to lose everything in my life to this horrid exhaustion. It puts such a tax on my relationships….I have very few of them because I can’t manage much….I have no time for myself at all and the very few hours I do have between work split between three people isn’t much. I can’t even entertain more than that. I’m too fucking tired and I’m sick of making excuses. One of the three people I choose to spend my precious limited energy on doesn’t even believe me, that I sleep as much as I say I do. He thinks I’m exaggerating and use it as an excuse to not have to do things with him. Dayne feels neglected as does Colt and the guilt is enough to suffocate me on its own…..and this is with Dexedrine in my system every day.
I need to stop worrying. I don’t even know what the results are yet. 3 hours to go. It seems surreal….I’ve been waiting one year and five months for these tests and their results and today I kind of wish they weren’t waiting for me across town. It sounds pathetic, I know, but I really didn’t want to do this one alone…
Today is the day and I’m so nervous I barely slept last night. I’m so tired…. I dreamed of very stressful things all night and kept waking, heart pounding in my chest, ready to run.
Dayne is going to come with me, hopefully. I’m not counting on it though because he often says he’ll be able to attend one of these appointments and is then called out on an emergency and doesn’t make it. I try to assume he won’t be there so when he does show up it’s a good surprise.
I can feel every blood vessel in my body right now. Pounding….I don’t usually get like this but something about this appointment is setting me off. I think it is the connection to the last time I had one of these studies as a child. They take video along with all the other info while you sleep and I had a series of very graphic and clearly articulated sexual dreams in the test. Articulate in a way that a little girl should not be able to express. The doctors were concerned, of course, and connected with Children’s Aid (I was a foster kid and had social workers follow me all through my childhood anyway). I was asked about my home life and I denied everything vehemently and repeatedly, until they made me actually watch portions of the video with my parents and social workers in the room. It was humiliating beyond words….I would have rather watched a full-on, raunchy porno movie with my entire family then have to sit through those few minutes of me doing things I had no memory of doing. I hated the feeling of being so unable to control my body, words, actions….it was paralyzing. Of course, my father was in a mad rush to get out of there and they both started telling the case workers about how a young foster sibling had tried to force me to have sex with him several times during visits when I was very young and how it must have scarred me. Another family friend had a young teenaged son who lured me to the bathroom when I was 5 or 6 and promised me chocolate bars and candy if I would put his junk in my mouth and hold it there for 30 seconds. They said these things were what had caused the sexual dreams and acting out. It took me years to realize that they never took me back to that specialist and stopped investigating my sleep issues entirely after that day because they didn’t want have to keep explaining that behaviour. I would not tell….would not get my father or mother in trouble if I had a choice, but my body wasn’t mine while I slept and having that sort of thing on camera was not a safe thing for my foster family. My mother was pregnant with her first natural child at the time and I can just imagine her fear.
So yeah, maybe that is the connection that’s making me feel like I’m going to faint every time I think of my appointment this afternoon. I’m hopeful that I’ll get some kind of result that will help me treat this thing that follows me around, making me need to sleep endlessly, but I’m not banking on anything. Medical appointments rarely turn out the way I think they will, for some reason. Still….fingers crossed there is some sort of path to follow to beat this, or at least cope better without having to take Dexedrine every day just to make it through work.
Whew. That was stressful. Back to work……how disorienting.
Yawns and rubs eyes sleepily*
I feel like I have been in hibernation for a few months now. I’m so tired guys….it’s just sucking the life out of me. I work like crazy, never taking much of a break, from before my start time until after my end time, daily. I’m trying, hard, to keep things going here and sometimes my efforts are appreciated and sometimes they are not. Most of all, I’m lucky to be working here because the hospital is being forced to cut many, many positions and mine is so damn busy, they can’t do without me. Silver lining eh? Well, silver plated anyway.
So that’s all I do. I work until I’m exhausted, get to the sitter to pick up my son, get him home and hit the couch. Some days I’m out immediately and sleep through until I get up for work again and sometimes I have a few hours to clean the house, cook dinner or even paint my nails if I’m lucky. The latter is a rare event.
I’m taking my meds (antidepressant, small dose of narcotic pain killers each morning, a heavy duty muscle relaxer and stimulants to keep me awake at work) on a regular basis and I’m eating healthy when I’m awake. The farmers markets are all open again and I live off of fresh fruit and veggies. I’ve eliminated soda from my diet almost entirely and my only real indulgences are coffee, tea and a bit to drink now and then – mostly whiskey, mostly on the weekend since I can’t stay awake long enough to enjoy it through the week. So, I’m doing okay over all. I’m not depressed, anxiety has been well controlled recently and the pain is fairly even, just flowing along. I’m not really needing any extra pain meds so that’s always a bonus.
I had an excellent meeting with Colt’s school on Monday morning and got him all set up for next year. Surprisingly, despite all of their warnings and threats, the school board has allocated an EA for Colt. I can’t believe the stress these people caused over this….but I guess no one really knew what would happen until it happened. They are going to introduce Colt to his new teacher before the end of the school year and they are trying to keep his current (amazing) EA on for next year so there’s some consistency for him. The principal is retiring and he adores her, so they’re going to have the new principal in before the end of the year to get acquainted with Colt as well. Lots of good planning going on, for once. He’ll be reassessed by the psych institute who follows him this summer and then we’ll be good and set up to start preparing him for high school. The psychometric testing will show us exactly where his abilities are and will help carve out the path we’re going to follow for the next two years. Finally, something we did has resulted in something positive for the boy. :) Doesn’t help that the government around here is going crazy, cutting services for autistic kids across the province. We’ve lost the only, very small, stipend available to us for his future. We were banking it for him anyway, but still…it’s frustrating. They’re going to place a huge burden on the school systems now, because there won’t even be the barely existent help we got with Colt available to the newest little ones on the spectrum. And these days, psychiatrists are throwing ASD at everything and anything, it seems. So backwards, it seems.
The biggest event in my world right now, outside of my son, is that I finally get my sleep study results next week. I’m waiting for them to call and cancel me or something equally as frustrating but I’m trying to remain optimistic. I get to actually meet with the Fellow who took my case…maybe even the consulting as well. All of the results should be in including all the blood work, the cardio and brain scans, the sleep latency testing and the overnight sleep study. I’m nervous but want to know what they have to say. I don’t want to take more meds, but, will do whatever they suggest I try to see if it helps. If it’s my back that is causing me issues, the pain control will need to go up at night. If the pain control goes up, the stimulants will need to go up to keep me from getting all groggy and stupid. If it’s not the pain or my body waking me because of random signals from my spine, it’s the sleep disorder they diagnosed me with as a child or something similar, I suspect. The only treatment for that as far as I know is sleep meds to help me stabilize my sleep cycle (I bounce directly out of deep sleep every time I reach it, if the issues are consistent with the past studies) and, possibly, more stimulants to wake me up for the day. I don’t like either of these options at all. If it’s something more direct like narcolepsy, not much changes. I might be able to get my work modified slightly to have different hours. Maybe working 10 hour days and having a day off through the week to catch up on sleep will help. No point in planning anything now though, as the answers are so very close.
That said, the thing I worry about most is that there’s absolutely nothing wrong with me. I am so nervous about sitting in that room to have another doctor look me in the eye for two seconds and then dismiss me with disinterest as the tell me my tests came back absolutely normal. If that happens, I don’t think I’ll ever go back for more investigations. It was so defeating, hearing over and over that the constant pain I was in was not being caused by anything. I was laughed out of one office and it nearly took me right out. The only fact that keeps me going is that there WAS something there, in the end and it wasn’t as if no one had seen it….they all just thought I was given the results that were in my patient chart and that I was looking for another cause. The damn report sat there for years before I finally called up my records and paid for a copy to take to a physician in the States who might actually take me seriously if I paid him enough out of pocket. My doctor hadn’t even been told about those results that outlined the arthritis and the huge amount of degeneration around my cervical spine (and other parts but the worst is from my brain stem to the middle of my shoulder blades – the surgeon I saw, with hope, told me I had the neck of a 90 year old woman with a history of spinal trauma.
…..anyway. Reliving that isn’t helping much. I just hope we get somewhere this time. Appointment is in 9 days. Counting down….
One more month to go before I get my sleep study results. It feels like so much time has passed since I had the thing. Some of the delay is due to them needing time to interpret the results and the rest is scheduling, I’m sure. I was going to start calling for a cancellation spot but I don’t want to be on edge, waiting for the call that never comes, so, I’ll just sit and wait.
I didn’t take any stimulants today so far, which is always a mistake. I hate them though…hate needing them so much. If I don’t take a double dose every morning I am absolutely useless by 1100 in the morning. When I went for the study, I went off them entirely for a week prior, just to ensure I was feeling the full symptoms; hoping it would help get clear results. I was so fucking tired at the end of that week it took me almost a month to recover. It’s a sickening, drugged out, sedated, fighting a losing battle kind of tired….actually, “tired” doesn’t cover it at all.
Sometimes, I almost feel like I’m slipping into another pocket of depression but I don’t really have the time and that seems to keep it at bay. I mean, work is so busy and difficult to manage that it entirely eats my time while I’m here and by the time I get to my couch at the end of the day I’m so wiped out I can barely sit up. I’m asleep soon after and the most of the living I do is in my dreams….and they are all over the place. I’m back to feeling like my dream world is reality and the real world is the dreamscape where all I do is run and run and run and run and try to stay upright before it all catches up to me and eats me alive.
One of the girls I used to work with at my last job (in real life) just got a layoff notice. She’s the second in the last little while….we’re having some huge (ever-lasting/ always ongoing) budget issues and support staff is usually the first to go when that happens, of course. It’s brought back so many feelings, hearing her tell me how scary it all is. I’m dreaming of my last set of coworkers and bosses and it makes me feel so crappy when I wake up. They really messed with me…..back stabbing assholes. They said they cared but in the end they held it all against me…the boss even made backhanded comments on my sick time on my way out the door. I should have never trusted them with what I was going through (physical illness only – I never disclose my mental/emotional issues in the workplace). Anyway – disappointing lesson learned there and I was happy not thinking about it anymore…until the ex-coworker reached out to me. Now it just makes me tired. Even more tired.
10:00 and I’m starting to fade. Screen is blurring and swaying in front of me; eyelids are pulling down as hard as they can and my brain is shutting off, switch by switch. Better take my meds before I crash.
I am so tired. It’s a double-whammy kind of tired this week….tired because I’m always freaking tired and fighting off sleep thanks to whatever is going on with my sleep cycle, but also worn-out, exhausted, haven’t stopped working for days that feel like weeks tired. Stressed out about work too, which also triggers the kind of tired I get when my brain has just had enough and the whole of me starts shutting down out of sheer unwillingness to participate any longer. My body is sore…my spine is killing me and it hurts to move….or not move….it hurts no matter what right now. I could get up and take some more pain meds but my purse is all the way across my office and what I would most like to do right now is just gently rest my fingers on my keyboard, right in home row, and stare blankly at nothing on my screen until the next two hours have passed by and I can go home. Of course I still have to pick Colt up from the kids who are watching him after school and then, after a quick rest in which I will have to stay standing so I don’t fall asleep, I have to go grocery shopping. I do not want to go grocery shopping. But. Whatever. We need stuff and if I don’t get it tonight I always put it off until Sunday and then hate myself for it by Sunday morning.
I feel like I have absolutely nothing left to give today. Not even to myself.