Amitriptylene is Rocking My World!

OK, I know I didn't have much positive to say about Amitriptyline in my last couple posts but I've changed my tune completely.  Between the vegan diet and Amitriptylene, I'm feeling better than I have in a long time.  Although, I'm not sure which is actually responsible for this change, if it's a combination of the two or something else entirely. 

I took this picture on my walk to Lover's Cove today, the first time I've taken a walk purely for exercise in weeks.  I put my earphones on and just WALKED!  It felt great!  I've also been taking fewer and shorter naps.  My muscles and joints feel stronger and are in less pain.  I'm trying not to get my hopes up and set myself up for disappointment later but I can't help it.  If it just ends up being a "good week" I'll deal with the disappointment later. 

My original plan was to taper off Zoloft, start Amitriptylene then, when the Zoloft was completely out of my system, start Savella.  I'm completely off Zoloft and up to a therapeutic dose of Amatriptylene but I'm holding off on the Savella since I seem to be feeling pretty well.  After all, I don't want to take anymore drugs than I have to. 

I'm feeling really well about the vegan diet too.  The stomach discomfort I had at the beginning is completely gone.  Oh how I pray this lasts!

Amitriptyline is Kicking My Butt!



I've been taking 100mg Amitriptyline for three days now and I and I feel like I've been living in a dense fog - denser than usual I should say.  I'm so tired and zoned out, I can hardly do anything.  The prescription is for 150mg per day so as soon as I feel more normal, I'll have to bump it up even more, which I can't say I'm looking forward to.  I've been off Zoloft for three days, so tonight I'm going to take the first dose of Savella from the titration pack.  I have a feeling this week is going to be difficult until I've adjusted to the new medications.  I've been having problems sleeping again complete with nightmares and disturbing dreams.  The body pain and muscle weakness haven't gotten any better either.  I really am tired of this medication cha-cha, withdrawal symptoms while going off, side effects of the new meds.

Wow - I'm just full of positive words today!

Zoloft for Fibromyalgia Pain?

Fibromyalgia Trigger Points

As I posted Tuesday, I've been titrating off Zoloft and replacing it with Amitriptylene so I'm able to take the Fibromyalgia drug Savella.  According to drug interaction information, Savella should not be taken with an SSRI so this change, as inconvenient as it is, was necessary.

Late last year, while conducting yet another of my countless experiments with regards to curing this dismal disease, I also weaned myself off Zoloft (as well as all other medications) in order to follow the Alpha Nutrition Diet for Aching and fatigue (original post).  I noticed when I was completely off Zoloft, that some of my symptoms, which had been absent for some time, returned.  I started again to feel as though I had the flu.  I felt feverish, sweaty and my entire body ached as one does when afflicted with a high fever.  I attributed it, simply, as another phase of the ever changing disease, however, I did make a mental note that the symptoms had appeared almost exactly to the day that I stopped taking Zoloft.

I hadn't read anywhere that Zoloft was being used as a treatment for Fibromyalgia or ME/CFS so I didn't put much stock in the idea that the timing was significant.  The flu-like symptoms did go away, though I can't remember the relationship with when I began taking Zoloft again.

Last night my two year old daughter had one of her infamous sleepless nights which, of course, meant I got very little sleep as well.  Anyone who has Fibromyalgia or ME/CFS knows that lack of sleep is a killer.  Last night, as I lay next to my daughter in her small bed, afraid to move a muscle or even breathe too deeply for fear she would awake, I felt my leg muscles begin to throb and ache, then, the pain slowly spread throughout my entire body all the way to my finger tips.  In what seemed like minutes from when my body started aching, I felt sweat begin to form on my upper lip and the fever-like chills began.  I thought,  "Oh shit!  It's back!".  I'd been fortunate to be rid of these flu-like symptoms for some time and it hardly seemed coincidental that I had taken my last Zoloft two nights before.

I've discovered through reading others' experiences, that treatments for both ME/CFS and Fibromyalgia vary greatly from patient to patient.  One of the strangest and most baffling things about these diseases is the drastically different ways they effect each sufferer and therefore, the methods of treatment that are used.  Zoloft!  Who knew?  If my experiment with Savella doesn't pan out, I'll be going back on Zoloft for sure!  If I can't be completely cured, at least I know some of my symptoms can be relieved.

Amitriptyline & Savella for ME CFS & Fibromyalgia

I'm still going strong with the vegan diet (day 26) and I really think it's helping me.  I posted the question on a couple different forums to see if anyone else had experienced cessation of symptoms after switching to a plant-based diet and I got mixed responses.  Some reported improvements while another wrote she had quit a vegetarian diet after becoming sick and found that meat protein had helped her.  It seems that like so many other aspects of ME/CFS and Fibromyalgia, diet also effects sufferers very differently.

I had a visit with my doctor last week and we decided I would try the last mainstream medication for ME/CFS and Fibromyalgia I haven't taken yet, which is Savella.  Since Savella can't be taken at the same time as an SSRI, I'm tapering off Zoloft and starting on Amitriptyline, a tricyclic antidepressant.  After I'm completely off  Zoloft (in two weeks or so), I'll start taking the Savella and see what happens.  I'm not getting my hopes up since no other prescription medication I've tried has helped, but I feel I have to try everything that's "out there" before resorting to more extreme measures such as B Cell Depletion Therapy which involves toxic chemo-therapy drugs.  If this latest experiment fails, I'll be making an appointment for a consultation with Dr. Andreas Kogelnik at Stanford who is leading much of the research being done on B Cell Depletion Therapy for ME/CFS in the USA.  I have some links and other information about this subject on my website: ME/CFS & Fibromyalgia Awareness - B Cell Depletion Therapy.

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.

Peaches & Cream & Funky Carpet

My doctor has prescribed some new medication.  She took me off Zoloft and Flexoril and replaced them with Cymbalta and Nurontin.  Both of these new medications have some seriously inconvenient side effects .  I've been on them for about two weeks now and I'm still feeling nauseated, dizzy, super fatigued, weak and sweating like a pig.  In the past couple of days I've also been getting horrible headaches along with everything else.  I feel horrible.  I'm trying to run the hotel while taking care of my seventeen month old daughter at the same time and it's really sucking the life out of me.  This is our high season here and the phones are ringing off the hook.  The moment I pick up the phone my daughter screams on the top of her lungs which makes for a great impression to potential guests. 

It certainly doesn't help matters that I've found my husband is pretty much unable to deal with my illness.  Somehow, he feels sorry for himself and thinks he's getting the short end of the stick.  I have to keep reminding him that I'm the one who's sick and that it really sucks for me too (to put it very mildly).  Today I had a mini-meltdown (if there is such a thing).  My husband had apparently dumped water on the carpet (again) and neglected  to sop it up thoroughly.  Since it's been really warm the past few days, the spill, of which I was unaware of until today, had started to ferment making the carpet smell somewhat like cat piss.  This is not the first time this has happened and  I thought we had learned last time that when you spill something on the carpet and don't clean it up (especially in the summer) it quickly takes on a life of it's own...literally .  This smell does wonders for my nausea.  Well, this afternoon as I was discovering the source of the horrible smell, my daughter walked over to where I was sitting on the carpet and proceeded to slowly pour her peaches along with the syrup from her fruit cup on to the floor next to the existing funk.  I pretty much lost it at that point.  I just layed down on the floor and cried.  My daughter was very confused and a bit distressed I think because she kept trying to lift my head with her little hand.  My husband had been trying to take a nap because he had to get up at five am to take out a fishing charter.  I walked in the bedroom and told him I was sorry, but he was going to have to forgo the nap for today.

Frustration Mounts...

Tuesday was my much anticipated doctor appointment.  The visit was anticlimactic to say the least.  I shouldn't have been surprised, I wasn't actually.  I expected nothing and that's almost what I ended up with.  When I finally got to see the doctor (after sitting in the exam room for close to an hour and while my very cranky one year old tried to open every drawer in the room) she apologized for not having returned my calls.  She explained that the rhumatologist she consults with had been "out of the office" for the last two weeks and promised she would call him as soon as he were back in the office.  I told her I had been feeling worse and worse and asked if she could prescribe one of those fancy new drugs made specially to treat fibromyalgia.  I was so desperate for some relief.  In the past we'd ruled these drugs out due to their prohibitive cost, but I didn't care anymore, I had to do something.  If I had to, I'd cash in my 401K.  She agreed and prescribed the new drug Savella.  She promised she would call as soon as she spoke to the rhumatologist and that she would fax the prescription to the pharmacy.

A couple of hours later I walked to the pharmacy to pick up the prescription.  After checking with the Pharmacist, the cashier told me that they hadn't received anything from the clinic for me.  I sighed deeply and walked out the door while dialing the clinic on my cell phone.  My doctor wasn't available, of course, so the receptionist said she would leave a "call back".  I waited all day and even called again but never received a call.  The next morning I started calling again.  The receptionist at the clinic was shocked of course that the doctor hadn't called me back and swore she'd given her the message.  She was with a patient but the receptionist promised to "grab" her as soon as she was finished.  Later in the day someone finally got her to fax the prescription.  When I called the pharmacy they said they had received the prescription but that they didn't have Savella in stock.  They'd ordered it and would have it the next day.

The next day I called the pharmacy and they said the prescription would be ready around noon.  I picked it up at one, then my husband and I took our daughter on the glass-bottomed boat to see the fish which she absolutely loves.  My husband held her, carried her and pushed the stroller since I wasn't able to.  Afterwards, my husband saw a sign at a restaurants advertising a corn beef sandwich lunch special.  Since it was St. Patrick's Day, he decided he had to have one.  While he was eating I started reading the literature that came with the prescription.  About halfway through the first page, bold and in all caps it read "DO NOT take this medication if you are also taking an SSRI".  Shit!  I'm taking 200mg of Zoloft per day which is an SSRI.

After lunch we went back to the pharmacist and asked him about the conflicting drug interaction.  His opinion was that I shouldn't do anything until talking to my doctor.  Holy shit!  Was I an unwitting subject on some sick version of Candid Camera or something?  Could this really be happening or was it just another of those fibro induced nightmares I live through every night? 

We went back home and I got on the phone yet again.  I begged the receptionist at the clinic to please have my doctor call me right away.  The staff at the clinic must have thought I'd lost my mind or something. After all, how could so many things possibly go wrong day after day?  They again promised they would tell the doctor that she needed to call me and I thanked them for being patient with me and reiterated that I knew none of them was to blame.  I waited all day again and received no response. 

At this point I was so beaten down that I just cried.  Of course this made my fibro flare up even more.  My husband was so angry he was ready to kill someone.  I felt completely ignored and insignificant.  Was I just going to have to live like this for the rest of my life; like a cripple?  I waited another night, trying to be as patient as possible.  The next morning I called the clinic and demanded to speak to my doctor.  "I have to speak to her today...period."  I hated being a bitch but this was clearly out of control.  I was really suffering and my own doctor wouldn't even return my calls.  Finally, about an hour later she called.  "What's going on?" she asked seeming at first surprised at my desperation.  I told her about the drug interactions and she seemed confused.  She said she would have to research it and call me right back.  She did actually call back in about 20 minutes and told me not to take the Savella.  Since I had been doing so much research on the web, I suggested that I switch to a tricyclic antidepressant that had been shown to be more effective with fibro patients and that I would also be able to take the Savella at the same time.  She agreed but didn't know how slowly to titrate me off the Zoloft so she would check with her psychiatrist friend and call me back.

Who knows when and if she will call back.  Basically I'm no further ahead than I was before the doctor appointment.  I seem to be building an immunity or something to the drugs I am on because I'm feeling worse and my sleep disturbances are returning.  Last night I had nightmares about crushed baby skulls and many other terrifying scenarios.  I also spent most of the night awake on and off.  I slept on the couch so as to not disturb my husband.