Eating In Your Sleep?!

It's embarrassing to admit but I can only explain this bizarre behavior as a side-effect of my newest medication.  As I've reported, now many times, I seem to have found a medication combination that finally has freed me, if only temporarily, from the grasp of this unknown illness.  I'm still feeling better, three and a half months after starting amitriptyline.  I'm also taking lorazepam for sleep because, while the amitriptyline takes away many of my symptoms including fatigue and pain, it doesn't seem to help my sleep problems much.

I've had some very unusual side effects from this medication, the strangest of which involves an insatiable urge to eat in the middle of the night.  It seems to have gotten a little better as my body adapts but at first I didn't know what was going on.  I'd wake up in the morning with a half a peanut butter sandwich stuck to my arm, tortilla chips or Goldfish cracker crumbs everywhere in my bed and only a very vague recollection of having gotten up in the middle of the night and it was happening every single night.  I finally got smart and started leaving myself something simple and healthy to eat, like a banana, where I could easily grab it.  Then I'd wake up and find the banana on my night stand or IN my bed with only one bite taken from it. 

I could go on and on relating entertaining anecdotes of my "sleep eating" but the fact is, this reaction is rather disturbing.  As a child and young adult I talked and walked in my sleep from time to time but eating in my sleep?  No way!  I only have a very vague memory of these actions and sometimes, none at all.  I also fear the very real possibility that I'll choke on something I'm eating if I lay down with the food still in my mouth.

I've known people personally who took prescription sleep medications and did all sorts of crazy things in their sleep but I'm curious to know whether anyone else has had this happen while taking amitriptyline.  Although this baffling behavior is disturbing, I'd gladly endure it every night rather than be as sick as I was such a short time ago.

Someone Pinch Me!

Lover's Cove on Catalina Island

I took this picture on one of my recent walks along Lover's Cove.  There was a westerly swell rolling in so I got some great shots of the spray at dusk.  The iPhone 4S camera is amazing!

My fingers are still tightly crossed as I amazingly continue feeling pretty darned well, two months after having started amitriptyline.  I've even taken up my old routine, walking every morning for a mile or two after I wake up.  I'm not able to do the steep hills I used to but hopefully I will soon. Today I started up one of the hills I used to hike up almost every day but didn't make it very far before I was huffing and puffing and my leg muscles felt like they were on fire.  I'm guessing my muscles are pretty atrophied after going two years without any real exercise.  I'm trying to take it slow but I'm so anxious to be back where I was.  The mere thought that I may be getting my life back is too much to hope for now.  I'm also hoping my renewed routine will help reverse the Osteopenia I was recently diagnosed with.  While I walk, I can also soak up plenty of vitamin D from the Southern California sun.

So, I may have found my cure.  Amitriptyline seems to have taken my pain and fatigue away for the most part.  Zoloft was working fairly well at controlling my pain but nothing, it seemed, could take away the fatigue, weakness and exhaustion.  I'm also still taking 2mg of Lorazepam to help me sleep and I'm not ready to give that up yet.  The thought of the disturbing dreams and nightmares I was plagued with when I first became ill is too terrifying to confront just yet.

I enthusiastically encourage anyone with ME/CFS to give it a try if you haven't already.  I realize that every one's disease is very different but it's always worth a try.  If you're like me, you'll try almost anything. 

 

Amitriptyline/ Ativan Reaction

Amitriptyline 50mg Tablets



I've been taking Amitriptyline for the last month and so far, it's helped me more than any other medication I've tried.  I did have an unsettling experience yesterday, however.  When I woke up, I immediately recalled a few bizarre, disturbing dreams I'd had that night.  I'd stopped having sleep disturbances, for the most part, some time ago so I found the dreams puzzling.  I've been taking Ativan/Lorazepam for the last two years to help me sleep.  Doctors have discouraged this and even scolded me for taking it since it's a "controlled substance" and "not to be used as a sleep aid" but that's a story for another post. 

Since I've been taking Ativan and Amitriptyline I've actually been sleeping quite well.  So when I woke yesterday morning I was confused but that feeling vanished the instant I walked into the kitchen and saw the pills sitting on the counter.  Apparently, I'd removed them from the bottles but never actually taken them.  This explained the dreams, as well as proving (to myself mostly) that I wasn't experiencing a placebo effect from either of the drugs. 

My day wasn't going very well, so conflicts with my husband, two year old and the hotel I manage, caused a completemental collapse.  At about ten am, I had a full blown anxiety attack complete with cold sweats, shakes and shortness of breath.  It had been quite a few years since I'd had one, though they were once a very  common occurrence (along with severe panic attacks).  I took a hot shower and calmed down quite a bit.  A couple hours later, however, another attack hit and I found myself laying on my bed, hardly able to catch my breath, shaking uncontrollably and soaked in cold sweats.  My husband, who was formerly an EMT/ fire fighter instinctively took my pulse and got a cool damp cloth for my head.

I've taken Lorazepam on and off for years and never had this kind of withdrawal reaction.  Maybe it was the combination of the two drugs together.  I don't know, but after I took 1mg of Lorazepam during the second attack, I felt much better. 

I recently read a theory that suggests FMS and/or ME/CFS sufferers may acquire a "chemical sensitivity".  In the past, I wasn't typically sensitive to medication side-effects as I am now, so it's a possible explanation.  I only know that I'll never forget to take my pills before bed again!

Another Horrible Week

My next post was supposed to be a continuation of the long list of drugs and experiences I'd had with those drugs during this ordeal.  I must, however, take a short detour with this post as it may have some relevant information to add.

My week started out this past Wednesday.  My doctor had prescribed Welbutrin, 150mg per day to address my severely, worsening depression and Prednisone as a third experimental trial to see if the previous results I'd had (see last post) would repeat themselves  The Prednisone dosage was to be as follows:  Day 1 - 60mg, Day 2 - 50mg, Day 3 - 40mg, Day 4 - 30mg, Day 5 - 40mg - Day 6 - 0mg, Day 7 - 40mg, Day 8 - 0mg, Day 9 - 40mg, etc.and to follow that dosing till I spoke to him.

The next afternoon, after having taken both medications my symptoms began to worsen.  Many of my old ME/CFS/Fibromyalgia symptoms that had been under control for about the last two months, came back with a vengeance.  I felt the all-over body pain creeping in and as the hours ticked by, they got worse.  I started to feel as though I had a fever (but of course I didn't actually) and coordination and energy dropped.  I was so depressed.

At first I thought that it may have been that I had missed a dose of Zoloft the night before.  When I had started taking the Zoloft (again) two months ago, my pain had mysteriously gotten much better.  My condition in general was better and all from a low 100mg dose of Zoloft it seemed.

I got back on track with the Zoloft and hoped to see a change after a couple days, but none came.  The pain and feverish feeling (on top of the already present weakness & fatigue) were getting worse if anything.

Then yesterday, I don't know what the hell happened.  I wondered if I had mistakenly gotten caffeinated coffee (a big no-no for me) that morning during my daily .5 mile walk to Dunkin Donuts because about an hour after I got home, the you-know-what hit the fan.  My mental state degraded, gradually escalated into a full-blown anxiety attack, complete with shaking limbs, heart practically beating out of my chest, that feeling that I was completely out of control and may just die any moment.  I couldn't talk to anyone or keep my mind on a single thought.  This lasted for hours (the severity waxing and waning) until I excused myself with an Ipod & headphones and locked myself into a room, lyed down on the bed, listened to Brahms and tried breathing exercises.  Oh yeah, I also took .5 mg of Ativan which is what I think finally brought me out of it for the most part.  As a result of my anxiety and just plain being out of my mind, I had missed a Prednisone dose (30mg).

The day wasn't over though.  My husband had flown in from LA that day after not having seeing me and our daughter for about six weeks.  We ordered pizza and sat down to eat.  I still wasn't feeling well and was not (to put it mildly) the life of the party but it seemed that the worst of my anxiety was over.  At one point I leaned my head over toward my husband's shoulder for some comfort.  The moment my head was down, my world began to spin out of control.  I'm talking full vertigo here - didn't know which way was up.  I also felt as though I would get sick at any moment.  I told everyone I needed to lay down and somehow stumbled to the couch as the worst of it was subsiding.  As I layed down, I still felt really dizzy and nauseated, but the spinning had stopped.  I remembered the missed dose of Prednisone and asked my mom to get it for me thinking I may be having withdrawal.  My dad took my blood pressure and it was 113/72 which is on the low side, but my pressure tends to be lower.  In about thirty minutes the dizziness got a little better and I was able to get up (with assistance) and be led slowly up the stairs to bed. 

The dizziness and subsequent nausea plagued me all night long.  When I got up to use the bathroom in the middle of the night I lost my balance and almost fell twice.  This morning, I don't feel too dizzy but weak and unsteady on my feet. 

I'll be calling my doctor as soon as his office opens.

Day 4 - 10/22/11 - Alpha Nutrition Diet for Aching and Fatigue

Still feeling like crap...

Symptoms
(0=mild to no discomfort 10=most severe discomfort/ pain)

3:00pm
Shortness of Breath - 4
Fatigue - 7
Headache - 2
Backache - 7
Eye Pain - 2
All-Over Body Pain - 6

Food Log
9:00am - 1 cup rice cereal, 1/2 cup rice milk,
10:00am - 1/3 cup ENF Formula
3:00pm - 6 peach slices, fruit ice pop
1:00pm - 1 cup rice, 1 cup broccoli & carrots, 1/3 cup ENF Formula
4:30pm - 2.5oz can salmon, large mango smoothie
6:00pm - 1cup rice, 1 cup broccoli & carrots, 1 cup rice cereal & 1/2 cup rice milk
9:00pm - 5 rice crackers

Medications taken at bedtime:
Cymbalta: 20mg, Welbutrin: 150mg, Lorazepam: 2mg

Day 3 - 10/21/11 - Alpha Nutirition Diet for Aching & Fatigue

Severe emotional breakdown at 9:30pm.  Felt extreme rage, anger and suicidal thoughts like I have never felt before.  Cymbalta is EVIL!  I have never experienced such withdrawal from SSRIs and I've taken most of the SSRI's out there.  I almost ended up in the ER.  I cannot even write some of the thoughts I was having down because they're too shameful.  I'm just so glad I was able to resist acting upon them.  I will never take a SNRI again.
Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)

10:30am
Shortness of Breath - 5
Fatigue - 7
Headache - 0
Backache - 7
Heart Murmurs - 3
Eye Pain - 2
All-Over Body Pain - 4
Sore Throat - 3

Food Log
9:00am - 1 cup rice cereal, 1/2 cup rice milk,
10:00am - 1/3 cup ENF Formula
12:00pm - 6 peach slices
1:00pm - 1 cup rice, 1 cup broccoli & carrots, 1/3 cup ENF Formula
5:00pm - 1.5 cup rice, 1.5 cup broccoli & carrots
7:00pm - 1 cup rice cereal, 1/2 cup rice milk
9:00pm - 5 rice crackers

Medications taken at bedtime:
Cymbalta: 20mg, Welbutrin: 150mg, Lorazepam: 2mg

Day 1 - 10/19/11 - Alpha Nutrition Diet for Aching and Fatigue

Slept until around 10am.  Woke up feeling bad:

Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)
                        12:00pm |  5:00pm
Shortness of Breath - 4  |  4
Fatigue - 6  |  6
Headache - 2  |  0
Backache - 6  |  3
Heart Murmurs - 5  |5
Eye Pain - 3  |  3
All-Over Body Pain - 4  |  4
Joint Pain - 5  |  4

Food Log
11:30am  -  6 peach slices, 3/4 cup white rice
12:30pm  -  1 cup cooked broccoli & carrots, 1tbsp olive oil, 1tsp salt
1:00pm  -  1 baked sweet potato
3:00pm  -  1 cup rice cereal, 1/2 cup rice milk
5:00pm  -  6 peach slices, 1/3 cup ENF formula
6:00pm  -  1 cup rice, 1 cup broccoli & carrots
7:30pm  -  1 cup rice cereal, 1 cup rice milk
9:00pm  -  1 cup rice

Medications taken at bedtime:
Cymbalta: 20mg, Welbutrin: 150mg, Lorazepam: 2mg

Reprieve of Sorts

My husband has moved back to our apartment.  We discussed our problems and made some compromises.  I won't regurgitate the tiresome details. 

It's been about nine days on the lowered doses.  Now I'm taking 40mg Cymbalta, 150mg Welbutrin and 2mg Lorazepam.  I've been feeling better than average the for last three days.  Tonight I'll take 20mg of Cymbalta rather than 40mg.  The thought gives me some definite anxiety since I do not want to repeat the experience I had ten days ago, but I'm so anxious to get  this crap out of my system and anxious to start the food allergy investigation.  I'm hopeful, but hesitant.  I'm so worried that it won't change anything and I'll become more desperate and hopeless than I am even now.  As each experiment fails, I think more and more that this disease will be my lifelong rival and I begin to plan my life as a disabled person. 

My daugher, who is now ninteen and a half months old, has learned that sleeping requires closed eyes.  When my husband or I tell her to go to sleep she lays her head back and with obvious force, squints her eyes closed. She reaches a tiny hand to her eye and so gently traces her closed eyelid over and over with a pointed index finger.  She cannot see but can only feel her closed eyes and imagine how she may appear as she sleeps. 

Am I Missing Something?

Either I've missed something major in my research or my cognitive abilities have been more compromised than I thought.  If anyone reading this post could offer some insight I may have missed I would really appreciate it.

For the past year and a half I've learned more than I care to about antidepressants (SSRIs, SNRIs, Trycyclic, etc.) and other forms of medication from pain killers to anti-convulsants and sedatives.  I've been prescribed about ten different medications (so far) by several doctors as I've tried desperately to get some relief from my illness.  Right now I'm taking 200mg Welbutrin, 60mg Cymbalta, 100mg Neurontin and 2mg Lorazepam once daily.

Actually, antidepressants are far from new to me.   I've been taking them for about fifteen years.  I've suffered with depression for as long as I can remember with my earliest memory of being depressed taking place in my second grade classroom.  But it wasn't until 1995, while I was attending college, that I was finally diagnosed  with Major Depression and medicated.  Since then I've probably taken most of the antidepressants on the market.

About eight years ago I developed severe Panic Disorder and started taking Lorazepam for acute attacks.  After my panic became partially controlled I used Lorazepam on occasion to help me sleep.  A year and a half ago when I became ill with Fybromyalgia my sleep was severely disrupted as it is with many sufferers.  I couldn't stay asleep and I was plagued with disturbing dreams and horrible nightmares.  I started taking the Lorazepam again and it magically helped me sleep without any noticeable side effects.        

OK so, here's where the confusion starts. The last two doctors I've seen have insisted that I stop taking Lorazepam due to it's "addictive" nature.  I've been prescribed other medications that are meant to replace it, the latest and greatest of which is Neurontin.  I took the prescribed dosage for about six weeks and never experienced any reduction in the side effects which were SEVERE and included nausea, dizziness, migraine headaches, confusion and excessive tiredness.

I'm not understanding the logic here.  Although Lorazepam is supposedly addictive, I've been taking it on and off for eight years.  When I do take it, I'm able to get a good night's sleep, wake up feeling rested and without side-effects.  I've gone days and even weeks in the past without taking it and never experienced any type of withdrawal (which I have from other medications).  The fact that Lorazepam is addictive seems beside the point in this case.  It has worked well for me consistently and I haven't had any ill effects that I'm aware of.  The same cannot be said about the drugs that have been prescribed to replace it.  What am I missing?  Is there some type of stigma attached to the prescribing of Lorazepam (Ativan) in the medical community?  Is it some kind of taboo?  I 'm thoroughly baffled and can think of no other reason that my doctors would be so adamant that I not take it.  Any insight on this?