Tuesday, November 22, 2016

Myoclonus, Sleep Starts, Sleep Jerks, Hypnic Jerks, Seizures: Silently Suffering

Back in May, I believe I wrote about the same issue that I've been dealing with. I wish I could say it's insomnia, but it's not. I live a very strange lifestyle now. (No, not the type you're thinking...) But strange in the terms of off-schedule, not the norm, whatever you wanna call it type of 'strange'. I'm very open about my anxiety disorder, and that can sometimes be quite debilitating. Many people who don't understand anxiety brush it off and just tell ya to "get over it" and "face your fears" -- blah blah blah. And while that holds up to be very true, and in fact, I face at least one fear a day, it still comes on like a beast, and sometimes unexpectedly. My "beast" happens to find me at night while I'm all comfy in my bed about to fall asleep. There is absolutely nothing brewing in my little noggin other than listening to the beautiful sounds of crickets and frogs from the window left open besides me. I can't tell you how incredibly peaceful our bedroom is. It's clean, it smells like lavender, and I have an awesome dog to snuggle with....and wife. (Had to add her in there.)

So picture this: you're about to fall asleep. Your eyes are closed, your body's relaxed, and you're already dozing off. Before you can get to that 'sleep stage', your body starts jerking violently and your breathing completely stops. You can't breathe in or out -- it. just. stops. So now your arms are flailing trying to signal your spouse that you need help! This lasts for a good ten seconds. And sometimes, those ten seconds don't have enough breath in you, so you begin to black out from a lack of oxygen. After your episode ends, you're out of breath, sitting on the edge of the bed with a huge migraine and your heart going up to 200 bpms. The migraine is also due to a lack of oxygen. After a while, you start getting sleepy again, so you try going back to sleep. But it happens every. single. time. you. try. It gets to the point where you just stand up, walk yourself over to the living room and watch TV. But you're so incredibly tired!!! You just wanna sleep. It's not insomnia. It's like the devil choking you for shits & giggles.

"Maybe it's sleep apnea?"

No. I have been to a couple of sleep studies already, two pulmonologists, and three neurologists. They all wanted to throw me Klonopin and call it a day.  They all diagnosed me with myoclonus. It's another word for, "I really don't know why your body is doing that" type of diagnosis. They also said it can be anxiety and left it at that. This has nothing to do with anxiety. After last night, I can completely tell that something is definitely wrong with my wiring. I mean, that's a given, but this is to a whole new level. So now, my wife is trying to get an appointment with an endocrinologist (a hormonal specialist) to see if they could help. It never ends. This has been happening every single night for the past couple of years. I have had them on and off for seven years though. But it wasn't a big enough deal -- they were just "sleep jerks" or "sleep starts". I can deal with that. My usual night involves at least 5-7 episodes, until I am totally worn out at around 5am. So I go to sleep at 5am and wake up at 11am. I'm grateful that I can work anytime and anywhere, but I LOVE getting up early in the morning, making coffee and having breakfast with my wife, commuting two feet to the office and starting work.

The night won't let me sleep.

As of late, I've been slipping into our living room to bunk out there from time to time, but they still come on like the devil. My mother and father in law gave us holy anointing oil and prayed over me while we were all on vacation last May. It helped to some degree. Every 'remedy' helps to some degree and then BAM -- it's back to the torture chamber. I sage my house, I pray over each room, I meditate and try to connect with God on a daily basis, which helps me emotionally. So whether or not I'll have this for the rest of my life -- my faith is still my #1 go-to.

I'm not well at all. I also know that things can be so much worse. But how do you explain to your family and friends who rely on you, "I just can't make it today," or tell them that you have to cancel out on plans or stay in because you were up the entire night? Sometimes I'm functioning on 4-5 days of zero sleep. I'm delusional and punch-drunk. I can't even think. This has affected my life so greatly that it even came down to suicidal thoughts from time to time. I rattle off things like, "I wish God would just take me this time," or I'll mutter out, "I'm too tired to live!" I don't want to be too tired. I've also put on more weight because being up all night long, I get hungry because I'm not sleeping. My hormones are probably a huge contributor to this as well. When someone says, "Well just exercise," and you look at them with your overly-medicated gaze thinking, "Are you nuts?" The Lorazepam doesn't work anymore. At this point, it's either upping the dosage or weaning off like I was supposed to do.

So there's that.

Good news is: I don't have epilepsy, nor do I have anything neurologically wrong with me. ...So what's wrong with me? I've had countless nights searching Google for people who have the same symptoms and wow -- so many people experience what I do, but like myself, they can't get the answers to help themselves. It's frustrating to say the least. I'm crying as I type this right now because people don't realize how much this can affect your life. At the risk of sounding like some crazy nutcase -- I need help. So I'm writing this post openly in hopes that people who Google the words, "insomnia", "sleep disorder", "myoclonus" and "sleep jerks" may have some kind of solution or can relate to it. Please send me a message over on my Facebook account or on the sidebar, there's a message option that goes straight into my personal email.

I've tried everything in case it was anxiety. I got a pedicure and massage the other day, went to get my hair done, I meditated and made the bedroom my sanctuary. I used lavender oils and soft music to relax me and stayed off my phone a couple of hours before turning in. Nothing -- nothing helped! I did elimination diets, I tried losing weight, I tried exercising, I tried everything you can possibly think that was a healthy start to ending these episodes. And...nothing. I even tried magnesium at night in the form of Natural Calm. That helped to some degree -- it mostly helped with muscle pain, to which I still use. It does have a calming effect and I love it -- but it doesn't help with these episodes.

This is not one of my usual posts. I'm usually trying to help other people. This time, I'm asking for other people to help me. I'm not a big fan of "me me me" posts, but I'm desperate. If you or someone you know experiences what I do, please email me or find me on my Facebook page. Please.
And thank you.


EDIT 9/12/16:

Okay! Here's my very first "edit" -- or discovery of what this might be if you are suffering. I received a few emails and comments on my Facebook page with other people suffering with the same thing. So far (and I say "so far" because sometimes my remedies 'find me out' and don't work any longer) -- but -- so far, I found that vibrations help with anxiety. These sleep jerks and myoclonic seizures are purely from a deep seated fear and anxiety. It is totally subconscious and rears its ugly head at night when we fall into a dream state. So before I go to bed, I either play my guitar, or I sound my singing bowl. A singing bowl as been used for centuries, usually my Buddhists and some Catholic rituals to clear the mind. It's best used for meditation. I purchased the Tibetan singing bowl over on Amazon.com. Thing is -- you have to learn how to use this properly. It really sings binaural tunes that has an impact on calming your brain and nervous system. I do this before I sleep and I have ZERO thoughts or a "to do" list before I sleep. I cannot believe how well this has been working for me!

Here's a how-to video on using a singing bowl. I truly hope you get one -- it totally relieves my anxiety! If you cannot view the video below, please click here!

 


EDIT: 11/22/16

Here is my second "edit" to update you on my sleep issues. Recently, my myoclonic jerks have turned into more of a seizure-like episode. It has gotten so bad, that I hardly ever sleep. If I do sleep, it's from 6am-8am (if I'm lucky.) Every doctor has associated this with excessive stress and anxiety. I have been praying, meditating as well as using my singing bowl, however, like I said before, "it found me out" -- any time I find a solution, it's like it says, "Oh wait, I see what she's doing," and BAM -- back to square one. Here's the thing though: I don't have cancer thank God, I don't have epilepsy, I don't have any disease or terminal illness. Hallelujah! I am an overall healthy 42 year old who loves life. But without the quality of sleep, comes the issue of quality of life. And let me tell you -- if you're a very patient, tolerant and easy going person, sleep deprivation will turn you into a monster. I can't believe some of the behavior I have displayed, some of the complaints that have come flying out of my mouth or even just the moodiness associated with sleep deprivation. I have been seeing bright LED-like lights in my vision, as well as my left side of my face, arm and leg have gone numb and listless for the first couple of hours right after an episode. I have no solutions to report, other than to just TRY to be grateful there is no REAL illness. I'm going to try to incorporate some other methods into my routine, like essential oils, and possibly acupuncture... I'll keep updating this more and more. Bad thing (and don't do this) is that if I take Robitussin DM after an episode, it seems to go away. I started using it because my episodes cause me to have coughing fits. So I started taking it, not realizing how drowsy this stuff makes me due to the dextromethorphan. Combined with ativan, this stuff usually does the trick, (but ONLY in emergency situations). I don't advise mixing drugs at all, but I was desperate. I'll keep you posted on my next discovery. Right now, please PRAY! I do believe in the power of prayer.

I also heard something pretty significant this morning. Joel Osteen was talking about how uncomfortable this pregnant woman was. She thought something was wrong because her ankles were swelling and she couldn't sleep comfortably. And the doctor said, "Well of course, you have to go through the uncomfortable part in order to come to that beautiful stage of birthing." And I thought that was a pretty awesome analogy of what we all go through, whether it's trying to heal ourselves in some way or trying to figure out WHY we go through "this" and "that" in life. Maybe it does have a significant role in our lives. Maybe it's to make us stronger and try to fix what's wrong, emotionally. For me, I think I have to take better care of myself emotionally and do more things that are calming. I have been trying so hard to take care of other people, especially my family, that I seem to forget about taking care of myself. I'm so incredibly worried about my mother who is in constant pain with her cancer, that it drives me nuts before I go to bed. "Is she alright?" "Maybe she needs something?" "Should I go and check on her?" These things float through my mind as I try to drift off to sleep.

Maybe this is the same for you? Good luck in your hunt and please, report back to me over on my Facebook page and let me know if anything worked for you if you are struggling with a similar issue as I am?

Until then...

For more of Deb's articles, please visit: www.debrapasquella.com or join her on Facebook and Twitter. Check out her cooking blog for some of her famous recipes!