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.

Lower Than Low

I went to see doctor number 4 for a second appointment today.  The prognosis was so depressing that I spent most of the day after, crying.  I was finally able to sleep for an hour or so which helped my mental state a bit and allowed me to talk to my parents about the doctor visit, which I hadn't been able to do earlier in the day.

None of the medications this doctor has prescribed have helped me.  Admittedly, the doses were low but I haven't seen any real change in my condition.  Actually, that's not entirely true.  I've been taking Zyflamend, which is an otc supplement for joints, for about two weeks.  I've been walking one mile per day and up until about two weeks ago the walks consumed incredible amounts of energy and effort.  It was as though I were a baby just learning to walk.  My muscles were weak, burned and didn't seem to involuntarily "know what to do".  I had to mentally direct my legs to lift and move forward which resulted in very slow, clumsy walking.  Since I've been taking Zyflamend, my walking is getting smoother and easier.  I think I'm walking a little faster and my muscles don't have nearly the weak, burning feeling they had.  It may just be a phase, but I'll keep taking the Zyflamend for the time being if I can afford the exorbitant cost ($40 for 60 capsules taken twice a day).

The doctor had also prescribed low dose Prednisone, Nuvigil, Sinemet and Lyrica which I tried one at a time.  Since they didn't seem to help me, we're moving on to the next "experiment".  I had taken high-dose Predisone over a year ago and to date, it's the only thing that has given me any of my life back and it actually made me feel almost completely well at one point.  This only lasted a week or two though, since my doctor didn't want me taking that high a dose (50mg per day) for too long.  I was so dissappointed when it wore off, though, and I was back to being as sick as I had been before taking it.  According to this doctor, this is an anomalous reaction considering my rhumatoid factors, etc. were normal.  He's guessing that I must have some inflamation somewhere in my body that's just not showing up in the blood work so, he's prescribed high-dose Prednisone again.  He wants to see if I have the same reaction and if I do, I can have a "break" for a couple months while we figure something else out.  When I asked him what he thought my diagnosis might be he mentioned Fibromyalgia, CHF and Mixed Connective Tissue Disease but added that these were all just names and probably related to some un-named auto-immune disease.  There were some other "speculative" possibilities we discussed but I just don't have the energy to go into detail about them now.  I hope to in my next post.

Since I'll be going back to California in two weeks, I probably won't see him again except for maybe an appointment via phone.  He's given the name of a doctor in the Bay area that he thinks I should see.  Since I live in Southern California I'm not sure how that would work logistically but I'm not worrying about that now.  My only goal today and tomorrow is to feel better mentally.  My depression has been so severe during the last couple weeks that I haven't been able to conjure a purpose for my existance on this planet.  The doctor prescribed Welbutrin to augment my Zoloft but I'm sure it'll be at least a couple weeks before I see any effect from it.  I'm just hanging here by a thread in the meantime.

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 2 - 10/20/11 - Alpha Nutrition Diet for Aching and Fatigue

Still feeling about the same or worse.

Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)
10:00am
Shortness of Breath - 5
Fatigue - 7
Headache - 0
Backache - 5
Heart Murmurs - 5
Eye Pain - 2
All-Over Body Pain - 4
Sore Throat - 3

Food Log
8:30am -  1/2 cup rice cereal, 1/2 cup rice milk, 1/3 cup ENF formula
9:30am - 4 peach slices
11:00am - 1 cup broccoli & carrots, 1 cup rice
4:00pm - 1 cup rice, 1 cup broccoli & carrots
6:00pm - 1 cup rice, 1 cup broccoli & carrots
8:00pm - 1 cup rice cereal, 1 cup rice milk
9:00pm - 8 peach slices

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?