My Story

Welcome to my new blog! Hopefully it is a place of support and healing for those that suffer similar sleep disturbances. My story is long, but you never know if it will help someone. So I start with that...

MY BACK STORY:
Since my late 20's, I've been dealing with insomnia, and now I'm in my early 40's. I've also dealt with anxiety my entire life, with some periods of major depression in my adulthood. Obviously both anxiety and depression can compound insomnia, and in fact, can cause it. During those periods of major depression, I went through a cycle of medication, including SSRIs (selective serotonin reuptake inhibitors) (Zoloft, Prozac, Lexapro), SNRIs (serotonin-norepinephrine reuptake inhibitors)  (Effexor, Cymbalta), and I was even put on Wellbutrin for a short time early on, until my doctor realized just how bad my anxiety was and that it was exacerbating it. Once I was diagnosed with hypertension in my mid 30's, I had to come off of Cymbalta because it can raise blood pressure. After years of therapy, trying new medications over and over again, and being unhappy with side effects, I decided to try to go off the antidepressant medication for good.

I was successful for about five years maybe (it starts to become a blur!), but slowly my anxiety got worse again. In 2013, I was starting to have anxiety attacks again and other unexplained symptoms that were likely due to anxiety. My doctor gave me Klonopin as needed, but she though I should try going back on an SSRI, this time prescribing a newer medication, Viibryd, that should not affect my blood pressure and was supposed to have fewer side affects. I was only on it a few months, and I hated how I felt, so I stopped. That was the last time I was on an SSRI. I often wonder if all these antidepressant medications made my insomnia and sleep disorders worse in the long run. On a side note, I also got tinnitus (ringing in the ears) in my late 20's/early 30's that I've often wondered if it was a side effect of these drugs as well. Not to mention, it affects my sleep, requiring me to have a fan or other white noise to go to sleep to drown out the ringing.

Along with all the anxiety and depression, I unsurprisingly had sleep issues and still do. It was the falling asleep that was and is always the worst. My mind just keeps running, and not even when stressed, although worse with stress, often thinking about stupid or nonsensical things. I tried a number of medications for it over the years along with those SSRI/SNRIs, including Ambien, Lunesta, trazadone, hydroxyzine, and even Seroquel (which made me feel absolutely crazy!). I also tried Melatonin. They all somewhat helped me sleep, but I was so groggy the next day, that I was no better than if I had not gotten sleep. I gave up, and often would self-medicate with alcohol, taking occasional over the counter sleep aids, or just suffered through. For a while, I got used to the idea that I could no longer sleep the 10 hours I used to as a kid!

A few years back, after complaining of being exhausted all the time and still struggling with sleep, my doctor had me get a sleep test. (Also on a side note, my Vitamin D was very low, so that was treated with a month's worth of high dose, something like 30,000 IU, of supplements as well.) Because sleep apnea can cause high blood pressure (especially in someone as young as I was and even when I was very thin), she ordered a sleep study. The test showed only mild obstructive sleep apnea, and mostly on my back, so my sleep doctor/neurologist said I could probably treat it by making sure I sleep on my side, also known as position therapy. There is even a special pillow made to keep you from rolling over on your back, but since I tend to prefer that position anyway, I didn't purchase it, and just tried to put a body pillow next to me. She also said I could try the oral appliance therapy or CPAP, but why? This was only a mild case! Also during the study, I had something like over 40 sleep awakenings throughout the night that were not caused by an apneic episode with no other known cause, which was more than the 10 or so times I woke up from apnea. Hello!?! I woke up 40 times for unexplained reasons? Why bother treating the sleep apnea? I was convinced it was more my crazy brain and anxiety. I opted for no treatment other than to try to sleep on my side. Some nights I slept well, some nights I didn't. I used the Klonopin I was prescribed for anxiety attacks, taking only half a dose (0.25 mg), on nights when I knew I had to get up early. I would always attempt to not to take it unless I was desperate. Still to this day, it is more difficult to get to sleep on nights I know I have to be up at a certain time early the next morning. And of course, on the weekends, alcohol put me right to sleep, though I know I was not getting good sleep.

I'm afraid that alcohol became more and more of a coping mechanism for sleep as the years went on. And then I started experiencing the jerks periodically. I would experience these jerks that kept me from falling a sleep for a few days at a time as far back as 2013, well, that I can remember! I would chalk them up to anxiety and stress and/or overdoing it with social activities and drinking. I'd take some Klonopin, cut out drinking for a few days, and they would go away.

I don't recall having the jerks at all for all of 2016. I distinctively remember having them for some bouts here and there that would last a couple of days during a particularly stressful relationship in the fall of 2015, but no recollection of it in 2016 other than just normal not being able to fall asleep insomnia!

WHEN THE CHRONIC JERKING BEGAN:
BAM.... February 2017. I distinctly remember the night. I knew I had to get up early the next morning, so I took a full dose (because normally I would only take half) of an over the counter sleep aid, the kind with the antihistimine diphenhydramine, and made sure I had a solid 8 hours before I had to be up. I started jerking like crazy for hours. It was jolting, frightening, stressful, and frustrating. And it continued for the next several days. Which then turned into months. This was the first time it had ever lasted longer than a few days. I even had some nights where I felt like I couldn't breath, gasping for air, and sometimes even before I was asleep. I thought my sleep apnea had now become central nervous system related instead of obstructive. I freaked out thinking something was wrong with me neurologically. I also knew it also could have been straight up anxiety. I definitely had anxiety about it and it was only making it worse.

So for me, it happens as I am trying to fall asleep, and I am usually still very lucid and aware. The jerks usually start with my left hand. Then it moves around my body to my head, my shoulders, my eyebrows/face, my chest/torso, an arm, a leg, my foot, and sometimes my jaw clenches and bites down on my tongue or cheeks! It is in no particular pattern. Sometime it's all of those body parts at varying times, some times it's just a couple parts. Sometimes I have a full body jerk that feels like I might just jerk out of the bed! Sometimes it lasts 15 minutes, sometimes it lasts over three hours. Sometimes it happens again if I wake up in the middle of the night. There are times that my mind is doing its thing where nonsensical scenarios are playing out in my head, and in that scenario if I laugh, my chest jerks, as if my body is trying to laugh, or if in the scenario I make a face, my eyebrows jerk, or if in the scenario I am reaching for something, my arm jerks. It's as if my brain is confused as to whether I am still awake and if what I am thinking about is actually happening. But some nights, it just happens, no thoughts needed. Sometimes I feel this almost swirling sensation in my head as I am starting to drift off that almost signals that I'm about to start jerking... and there it is.

There are some nights it is not as bad, but it is generally a nightly occurrence since February, and it is torturous. I too have read and have been told by doctors that these jerks are harmless, but the physical and mental affect of being jolted by your own body for hours and for days on end with no explanation, and the anxiety it causes that also perpetuates the issue, and the sleep it deprives you of... that is certainly harmful. Why does my body betray me when it so desperately needs sleep?

In mid-March, after over a month of experiencing this, I told my doctor about it at my annual physical. She thought I was just in a cycle of major anxiety and some minor depression. She didn't want to put me back on any antidepressants given all the ones I had tried before. She asked if I tried over the counter sleep aids, and when I told her that was when it started, she confirmed they can also cause them. She also didn't want me to rely on the Klonopin, given its addictive nature. She thought I was just sleep deprived, and that if I took Ambien every night for a few weeks that I would get the sleep I needed and then everything would be fine.

I, of course, was scared (because I have anxiety!) to take Ambien with my sleep apnea. I knew I had it, and although mild, it had been a few years since my diagnosis so it could be worse, and I had gained weight, and some nights I was having breathing issues too. Not to mention, my insurance would only cover 15 days worth because Ambien is apparently addictive in a different way.  I did take a 1/2 dose two different times, but in desperation with Klonopin. And one night, I took a full dose without anything else, and I stayed up reading for an hour without getting tired, so finally made myself turn off the light and try to sleep, and it did not really stop the jerks. I eventually fell asleep, but woke up, and felt like I couldn't fall back asleep because my breathing was so shallow and I felt like I couldn't breath. Never again!... at least a full dose!

In April, I decided to go back to my sleep doctor/neurologist in the hopes of getting another sleep test and fixing this. I did the sleep study, and it went terribly. I slept about 3 hours. I got about 15 minutes of REM sleep. I cried during the night because I knew what was happening at home was not replicating in the test. As I was trying to fall asleep, not a single jerk happened like it happens at home. NOT A ONE! I remember having two jerks that woke me up while on my back, which I think were due to apnea because they purposely had me sleep on my back for the majority of the time, knowing that was when my sleep apnea is worst. The report came back saying I did not have a Periodic Limb Movement (PLM) disorder, but it did note 21 limb movements. I also had 58 awakening, while only 18 apneic episodes, so again my theory that part of my issue is just plain insomnia and my crazy anxious brain appears to be true. The results still say I have sleep apnea, of course, and although worse than the test a few years ago, it is still only mild, and I never actually stop breathing for prolonged periods of time and my oxygen saturation never dipped below 90%, which I was told was good. Again, this adds to my theory that my primary issue is not sleep apnea. My biggest problem is the insomnia, anxiety, and jerking before I go to sleep, but okay, I am desperate, I'll treat the sleep apnea too!

To be fair, my sleep doctor/neurologist has acknowledged that the jerking can be a problem for some people even if it is not PLM or Restless Leg Syndrome (RLS). Ironically, she holds the opposite belief of my regular doctor. She does not prescribe Ambien because patients tend to get used to getting such good sleep that they cannot sleep without it. She also confirmed that Klonopin is actually used to treat hypnic jerks, so if it is working, I should continue to take it as needed. She still seems to think that if the sleep apnea is treated, then all this other stuff will go away. And if it doesn't and the Klonopin stops working or I don't want to rely on that, I can try gabapentin, which she says has worked well for some of her patients with little side effects. While both of us would prefer to go the non-drug route, I am skeptical that just treating the sleep apnea is the cure to all this.

Unfortunately, in the meantime, I found the only nights I didn't get any jerks at all was when I was drinking, and it had to be more than just one or two drinks, so unfortunately copious amounts of alcohol became my primary remedy for this problem, which in turn, I believe has made it worse.

SO HERE'S MY CURRENT TREATMENT:
I do agree that my sleep apnea is a part of what wakes me up during the night, which then in turn creates yet another cycle of trying to fall back asleep and getting the jerks. So, I have opted to try the oral appliance therapy. It will be about another month before I even get it, and then it can take even more time to get used to it and for it to be effective, and I may need possible adjustments. CPAP is actually an option, but they put those masks on my face before the sleep test, and I was almost in full on panic attack. I am not sure I can ever handle that.

In the meantime, I had been taking 0.5 mg Klonopin each night recently. There are some days it does not work, but more recently, it has been doing pretty well. I went down to 0.25 mg for a day or two, and now I am only taking it as needed.

Beyond my multivitamin, I have regularly been taking the following: 250 mg Magnesium, 1200 mg Calcium, 3000 IU Vitamin D, 1000 mg Vitamin C, and a Super B Complex. However, I am uncertain whether any of that is helping!

On top of that, I recently quit drinking all together for a while. The first few days, the jerks were bad. I honestly think my body got used to having alcohol to get past that sleep-wake stage. I still have jerks, but they seem to have calmed down since I have cut out alcohol. I am not convinced I have to quit entirely, but I do not need to rely on it as treatment, and I clearly had been.

I am working on getting regular exercise (nothing vigorous) and loosing weight. I try to do mediation and relaxation exercises and work on my anxious brain, when I have the time that is! Basically, I am trying to take better care of my mind and my health. Part of that is acceptance. Acceptance that this may never go away, that it is not the worst thing that could happen to me, and that I have plenty to be joyful about in my life regardless.

I have been tracking my sleep for the past two weeks as well to see if I can get to the bottom of what makes it worse and what makes it better. I have been using a spreadsheet I put together that you can find on my Sleep Tracking page.

So basically, it's all a continued experiment.

I DECIDED TO START THIS BLOG:
I have been scouring the internet, as I am sure many of you have as well, and wanted to bring all my research into one place. I also wanted a place to share my story in a cathartic sense. And I saw that The Man Who Cannot Sleep did not seem to be as active lately, and many people still post there, so I thought I might pick up where he left off. And lastly, I hope that maybe just one person might be helped by what I have to say.

Please look around, feel free to comment, join and post in the We Cannot Sleep forum, and let's help each other through the frustration, fear, and sleeplessness.

Wishing you peaceful sleep...