It’s 4 O’clock in the morning…..
So for those of you new to this brain damage/ CPM/EPM experience, you might soon realize you don’t sleep normally anymore. You might sleep too long. You might not sleep long enough. You might sleep for 2 hours only to find yourself awake until the crack of dawn, so that you can suddenly fall back to sleep at 6:45 am when you need to get up at 7.
What do you do?
For me, I would usually turn to FB to surf cute animal videos and lament on my current insomnia kick, but after several fruitless debates with the general public on topics that I have considerable knowledge, I realized two things: FB stresses me out, and I have no self control in walking away from fruitless debates with the general public. It results in HOURS of going back and forth with people. It results in hours of me trying to find research articles that prove I’m right, that have no sway with the unreasonable.
So, I walked away from FB, at least for now, but tonight, after two hours of sleep, I found myself wide awake. What do I do? My hands twitched for my go to drug, my cell phone. I surfed through my email. Spam. My fingers twitched. Should I log onto FB to just vent my frustration of how much I hate not being able to sleep?
Ugh. I grab my phone and go to medicine cabinet and pop a Xanax along with a TUMS. I need sleep. Now, I just want to mention. You should not combine TUMS or any other antacid with your prescription meds. No. You won’t self destruct if you do, but the absorption of your meds can be greatly hindered by your antacids.
I drag myself back into my bedroom, and I stand there, hovering over the bed like some crazy horror movie serial killer, except instead of a knife, I have an IPHONE. I literally sway back and forth debating with myself–pale, crazy eyed, sleep deprived, hair a mess. I sway left—go write on my blog. I sway right–go back to bed.
Finally, I set down my phone. I climb back to bed, staring at the ceiling. It could be an hour before the Xanax kicks in, and I fall asleep. FB ? No, FB? Oh, the dilemma!
I desperately want to tell everyone about my 6 year old daughter’s recent rant.
Izabel: “Mom! Tomorrow, you need to call Mrs. Morrison (her teacher) and tell her I am NOT coming back to school tomorrow. I NEED A BREAK- EXCLAMATION POINT (waiving her hands up and down for emphasis). EXCLAMATION POINT! (Saying the words-“exclamation point”) EXCLAMATION POINT! EXCLAMATION POINT! Sometimes, a 6 year old kid just needs a break from school,” she reasoned, “I am not learning ANYTHING new.” She continues on making her very cogent point. Tom, comes from the kitchen, “This seems like a monologue.”
“It is,” I reply. How can you possibly reason with such a dramatic argument from your 6 year old? I didn’t try. Instead, I used a diversionary tactic, “Oh, look dad has dinner.”
I love my six year old daughter. She is hilarious, and this is just one of those stories that my friends on FB love to read about, so my fingers are itching to jump on and tell them, but I’m also thinking of my last debate that left me leaving FB, and how much I went to get back on the conversation and tear apart the people with facts and statistics and research, which will to no where but will cause stress, fatigue, emotional distress, etc.
That brings me to here. Time is ticking towards 5 am now. I am tired but awake, and I’m trying to figure out what’s the next step. Sleep? Or trying to figure out a new series of posts for either a new blog–a spin off that discusses politics, vaccines, other medical topics, etc. or researching more about brain injuries: newer treatment options, medications, alternative medicines, diets, etc.
This is another problem with brain injury–making choices, wanting to do everything but hardly doing anything because you can’t decide. Just look at how long it took to decide to write this post.
It’s working though. The Xanax is kicking in. I’m getting sleepy, and I’ve decided any decisions about what to do next can wait until 8 O’clock in the morning. 🙂
Have a good night, morning, day!
Hyponatremia and Central Pontine Myelinolysis 
Hello, I’m Joe and a CPM survivor. I was diagnosed in November of 2012. My diagnosis was caused by Hydrochlorothiazide use for high blood pressure. In addition, I was working out an hour a day, running 3-5 miles 4 times a week and had cut all sodium from my diet. I’m from Texas where we sweet a lot. As you can imagine my electrolytes were WAY off.
When I was admitted to TIRR Rehabilatation in Houston the neurologist asked me about my sleeping. She put me on nortriptyline 50 milligram 2 pills at bed time for sleep. It worked very well and allowed me the freedom of waking up to use the bathroom. I now am not taking it but take 4, 3 milligram tabs of melatonin with thyomasin. I buy it on Amazon: http://www.amazon.com/gp/product/B0041CB50M/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1
Some advise, take the phone and put it in the other room. Any brain activity will hinder the sleeping. Also create a healthy sleep space. Make it dark. I bought blackout drapes at Marshalls. Even the color of night lights and clocks can trick the brain. I know, circumstances can hinder sleep, I have a partner, sleep with two dogs, have a cat, and live near downtown Houston but try your best to create a sleep space. I’ve learned to think of mind freeing thoughts when I do wake up, like my favorite place to be. Not what I have to do. My neurologist had me pegged when she asked if I was obsessive compulsive. If I can do this, you can 🙂
I’ve come a LONG way in two years. I’m still in therapy. I’m 42 and have a lot more living yo do. Now I’m in speech therapy / voice lessons for the 4th time. I will beat the trech voice! It took me forever to learn with the speaking valve but it’s been harder to unlearn it.
I’ve been following you and know your posts make a difference. If for no one else, for you and me!
Joe
Hi, Joe!
Thank you for your information and for contacting me! I’m glad to hear from another CPM survivor. It sounds like you had the perfect storm for hyponatremia. I’m so sorry to hear it wasn’t treated correctly.
I’m glad you are recovering well. I know therapy can be a long, hard road. I was in occupational and cognitive therapy for a few years. I’m thinking about heading back in for more sessions. Sometimes, you need to have a break in between treatment to see how far you have come and figure out where you need to go.
In regards to insomnia, I never had an issue prior to the brain injury with falling asleep or with waking up and not being able to immediately fall back asleep. However, since the injury, it has been a cyclic issue. I have tried dozens of sleep medications, but not the one that you mentioned, so I am looking forward to trying it. I have tried melatonin. I find it works okay, but it still doesn’t do the trick completely, and if I use it for several days, I build a tolerance.
So far, the .5mg of Xanax right before bed, has had the best impact. It seems that the biggest issue is that I don’t really breathe when I sleep. Numerous sleep studies show that when I sleep, I barely breath (very shallow breathing). This leads to hypopnea, which leads to my waking up 6 to 18 times an hour.
Recently, I tried a CPAP machine. I haven’t received the results, but I know I was waking up a lot. At least, three times I woke up and couldn’t fall back asleep because of the machine. Since, I don’t have an issue with obstruction, but have a problem with actually breathing, I didn’t have a lot of optimism for the CPAP. It would be more likely that an iron lung would work, but I don’t want to give them any ideas. 😉
I agree with all of your advice, and I actually implement those things. My phone is set to silent. I turn it over on the nightstand. We cover the windows with a comforter, though black out drapes would be way more sensible. I cover the entertainment stand, so we don’t see any lights and our PC is a single unit PC, so it doesn’t have any lights, either. We use a background fan for ambient noise. Even though, I have a TV in my bedroom, I don’t use it unless it’s during the day.
In the past month, I have even given up ALL caffeine–not even chocolate!
The hardest thing to achieve is going to bed at the same time every night and getting up at the same time every day. When you don’t sleep normally, you tend to try to sleep as much as you can when you can.
If you would like to share your CPM story, let me know, and definitely continue to share your advice!!