Right Decision? Amitriptyline Wrap Up

I wonder if I made the right decision about stopping amitriptyline.

My pain is way, way up today. It is horrible. I want a break from my skin.

And I have been tired and weak all day. I tried to take a nap, but people woke me up just as I was about to fall asleep... twice. Then I gave up. Not without some tears, mind you.

I hope desipramine works. I read online that it takes 1-3 weeks for tricyclic anti-despressants to work for nerve pain. Amitriptyline worked after one week, and I hope for the same from desipramine. Three weeks of this kind of pain... shoot me.

Worse, if it does not work, I would have to switch to something else and wait for that to work!

I am frustrated. This pain is unbelievable.

But on the other hand, I seem to have gained a few pounds. And I am finally feeling hungry and full again. So I guess the accidentally eating until food is coming back up thing was from the amitriptyline. Speaking of which, I guess I should list the side effects I had.
-Dry mouth
-Dry everything
-Appetite/stomach issues
-Constipation

How can I decide between horrible pain and all that? I would choose all that, except that I was afraid the dry mouth would give me more cavities. I already get them too easily. However, if nothing else works, I do feel like I have amitriptyline in my back pocket.

Darn It, the Amitriptyline Was Working

Yes, the amitriptyline seems to have been working. I did not take it last night, and my pain was worse again today. Not as horrible as it was, but definitely worse. I wish I could have tolerated the amitriptyline side effects. Hopefully the new medication, desipramine, works. I took it tonight.

No issues with my Avonex shot. It hurt today though. :(

Absolutely no dizziness or vertigo today. Interesting that this has improved in tandem with my vision. Related?

And today I am once again feeling hungry and full. Back to normal. So... was that the amitriptyline? Or some belated effect of steroids (seems less likely).

Sensory:

-Pins and needles: 1
-Tingles: 0
-Dysesthetic pain: 8
-Paresthesias: 4

-Numbness: 3
-Vision: 1-2, still fluctuating but so much better
-Nerve pain: 7
-Hearing: 0

Motor:
-Walking: 1
-Sore muscles: 3
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 1

Cognitive:
-Processing: 0, had a somewhat high-pressure meeting and was speaking fluently! And no issues keeping up with the discussion. I did not even realize it until just now, when I looked back on my day.
-Memory: 0, I think
-Attention: 0
-Confusion: 0

General:
-Fatigue: 3
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 3

Emotions: Nothing to discuss.

Getting Forgetful

I forgot to blog the last two days!

Tuesday was one of the more painful days I have had. Burning pain in my skin. But spasticity was not bad. I was pretty darned tired. And I had PT.

Yesterday my pain was low. It was wonderful! I got some anaerobic exercise in the morning. And I had PT. PT has been good; I have not been kept waiting too much. Yesterday my left knee was bugging me again, and I had some trouble walking on the treadmill. Jackie the PT checked it out and found that the problem was not with the joint. My spastic quad muscles were not allowing my knee to work properly.

Today I had another less pain again. I was busy at work and came home pretty tired. I made myself a bit of dinner--boiled some ravioli--and totally wore myself out. I have been resting on the couch all evening and have no energy. But I was walking really well all day until I ran out of steam.

I had two weird forgetful moments today. A coworker told me that she was going to get her blood pressure checked, explaining that it had been up and down all day. A few minutes later, I looked around to find that she had vanished. I had absolutely no recollection of our earlier conversation and was really wondering where she was. I let it go. After five or ten minutes or working and idly wondering (as it is highly unusual for her to be gone), I asked another coworker where she was. Then I instantly remembered where she had gone.

The other example is that I had pills in my pocket. At first I thought they were my mid-afternoon dose of gabapentin, but then I realized that they were my breakfast pills, which I had forgotten to take. I took them around lunch time. Several hours later, as I was packing my things to leave, I remembered the pills and realized that I had not taken my mid-afternoon dose of gabapentin. I felt in my pocket for the three gabapentin pills, only to find that my pocket was empty. I panicked for a minute, wondering where the pills might have dropped out. During a meeting? Maybe I should look in the conference room. First I looked around my desk area. A few seconds into my search, I remembered that I had taken the pills in my pocket--and they were not gabapentin.

These little lapses in short-term memory happen to me all the time. They make me confused sometimes.

My dry mouth has been pretty bad. I emailed Dr. Rick today to let him know that I am throwing in the towel on amitriptyline. He is going to call in a prescription for another tricyclic anti-depressant, desipramine. I wonder if my pain will increase again when I stop taking the amtriptyline. I am not sure if it is helping or if my pain just happened to decrease yesterday and today.

I ordered an exercise ball and foam roller, which I am using in my PT sessions. I can use them for exercises at home.

Sensory:

-Pins and needles: 3
-Tingles: 0
-Dysesthetic pain: 5
-Paresthesias: 6, electricity crackling through my right foot (mainly)

-Numbness: 3, still having tongue issues, mild fingertip issues, and of course the feet as always
-Vision: 2, up and down but generally better
-Nerve pain: 4
-Hearing: 1, sometimes I think I hear sirens... weird

Motor:
-Walking: 1 daytime, 5 evening
-Sore muscles: 1
-Fine motor: 3, tremor bugging me
-Weak muscles: 4
-Spasticity: 1

Cognitive:
-Processing: 0
-Memory: 1
-Attention: 0
-Confusion: 0

General:
-Fatigue: 4 day, 8 evening--"can't hold my head up" tired
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Fine. I handled a potentially stressful meeting well. But then I almost cried at a friend's email mentioning my MS and how you would never know I am in a lot of pain. That I hide it well. That makes two people who have said that to me today, that I hide it well. 

Good Day

I had a relaxing, boring day. That was okay, because I needed to rest. I read a book for a while, which I was doing for a friend--she asked me to read and summarize the first three chapters, so she could teach them to her students. It was an interesting book, and I was happy to help her.

Then I went to a neighborhood bakery and the grocery store BY MYSELF, walked all over that grocery store, and came back still functional. Yeah! I am having trouble getting my butt out of bed in the mornings, but once I am up, I have had more energy the last few days. The mornings have been particularly good.

Mornings have been pretty good for pain, as in not more than level 6/7. Unfortunately the pain increases in the afternoons and is pretty bad in the evenings. Today was no exception. I took half a Vicodin (250 mg) around 2:00, and I took a whole one at 7:00. I am still trying to decide how much it helps. Maybe some. But I wonder if it can give you back pain. Maybe that is coincidence.

I had the bad dry mouth again today, along with the sour taste. Yuck. I did see that on the amitriptyline side effect list. I also have pain on the roof of my mouth, like I scraped it. But I am pretty sure I did not. I guess I will have to see if it still hurts tomorrow.

Actually, my mouth is not the only thing that is dry. All of my mucous membranes are. I have not noticed my eyes getting dry, though, which I am grateful for.

That amitriptyline sure does make me tired. I was wide awake, but I took that medication about 45 minutes ago and am having trouble keeping my eyes open. It came on pretty suddenly.

After breakfast, I planned to see how long I could go without food, to see if I became hungry, but I ended up eating lunch with my friend. And dinner. Maybe I will try again tomorrow. I definitely had trouble feeling full. Reflux=full. Shortly after eating, I feel bloated, which stinks. But it is not a "full" feeling, more like a gassy feeling--big stomach.

Sensory:

-Pins and needles: 8
-Tingles: 0
-Dysesthetic pain: 9
-Paresthesias: 9, painful electricity, was bad sometimes in my lower body, and it was moderately severe in my tongue sometimes

-Numbness: 3, mouth issues--lips and tongue. Parts of feet, as always. And my left fingertips are getting worse.
-Vision: 3, it seems like my radius of clear vision has expanding--it was about 6 feet, but this morning it was more like 20 feet. It worsened again the afternoon but it still not as bad as it was at its worst. The same thing happened yesterday: better in the morning (even better than today) and worse later on.
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 7, gosh my upper arm really hurt sometimes. I got the shot yesterday in that area, but the shot was just under the skin. I do not see why that should cause pain. But it does not hurt now--thanks, Vicodin. My leg muscles also have been sore sometimes.
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 5

Cognitive:
-Processing: 0
-Memory: 0, I remembered what I needed from the grocery store, without writing it down! I needed three things.
-Attention: 0
-Confusion: 0

General:
-Fatigue: 2
-Balance: 2
-Sleep: 0
-Bladder: 0, I am having some issues in the mornings, which I attribute to amitriptyline, but then I am fine all day.
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0

Emotions: I think all the pain stresses me out sometimes. Severe pain is just so draining.

Shots and Pain

Today I had my monthly visit at the MS Center. This was a short visit, just an hour with Alyssa--vitals, shot, bloodwork, medication update, vitals, making copies of my log book. I keep a log of the shots I do at home, with pain levels before and after the shot. It is not a big deal.

My blood pressure was 133/80 and pulse 80, but I was chatting with Alyssa at the time. Then it was 120/62 and pulse 75. That is still higher than normal for me, but that is what it has been the last two months whenever I go to the doctor. I hope it is not really increasing, that I am just nervous to be there.

My vein ran dry after about five tubes of blood, and I still had six or seven more. Then she had trouble getting another vein. Ugh. The needle sticks did not hurt very much, though. I asked Alyssa to print my labs from the fall, which she was kind enough to do. That had my Vitamin D, calcium, etc.

The subcutaneous shot with the daclizumab/placebo STUNG again. Yeowch. I would take the bloodwork over that shot any day.

I did my own shot at home, and it went fine. I remembered to pull the skin taut. It hurt a little, and then it spurted some blood when I took the needle out. That surprised me. I must have nicked a little blood vessel. I put pressure on it, and it was fine.

My mouth had been so dry today. All of my mucous membranes, really, but my mouth was the one that bothered me. I suspect the amitriptyline.

I had a great morning, and an alright afternoon, but the evening has been pretty bad. Severe pain in my butt, legs, and feet. Oh my goodness. So bad. And in my tongue! The pain in my lower body has often been more like electricity than freezing/burning. It is bad either way. Oh, and the pins and needles get in there. The three sensations morph and blend with each other.

One thing that is worrying me a bit is that I seem to have lost the ability to feel full. I eat and eat, and I stop when I realize that I have eaten way more than I typically would. I wonder why I do not feel full. It gets to where my stomach feels huge and I even (grossness warning) reflux up some food, yet I do not feel full! I do not like this at all. I think it has been going on for several days now... maybe since Monday. I seem to recall eating a lot for lunch that day. I really hope this is related to the steroids, not MS. I want it to go away. I also do not think I am as good at tasting things and detecting temperature with my tongue--I am sure that is because of the numbness and pain.

So far my side effects are ok from the shots. I guess. I feel hot, but my temperature is normal. I was very achy for a while, but it got better. That was 30-60 minutes after my IM shot, so probably too early for that to be the reason. I guess I am still achy, now that I am attending to it. And I started feeling really sick around 5:00. That was before I did my IM shot.

Sensory:

-Pins and needles: 8
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 9, the electricity

-Numbness: 3
-Vision: 4, it was a lot better this morning, got worse again in the late afternoon. I am very hopeful for tomorrow.
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 7, my upper arm really hurts where I had my subcu shot. And my legs, with the spasticity. But I had little pain this morning.
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 6

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 2

General:
-Fatigue: 6, but I would probably say 3/4 until early afternoon. Later in the afternoon and all evening it has been more like 7/8.
-Balance: 2
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0

Emotions: Nothing to talk about. Maybe a little irritable.

Good PT Session

I was not in that horrible pain every minute of the day, but often. Pretty much all afternoon, and the evening was almost unbearable. I went to a church thing and SUFFERED sitting for an hour and a half. I think my eyes were crossed from the pain. I kept losing awareness of what was going on, needing to bring myself back to what was being said. It is hard to pay attention, like the pain just takes over. I was wondering how I will handle church on Sunday--three hours of sitting.

I went to PT today. Much better than last time! Last time I was there for two hours, and a lot of that time was spent waiting around for the PT to bounce back to me from other patients. I came home and cried--exhaustion. Today, my visit was about an hour, and a lot of that time was actually spent with the PT. She showed me exercises on a balance ball and foam roll thing, as well as hamstring stretches to reduce spasticity when I feel it kicking in.

I guess I handled the amitriptyline well today, because I was not overly tired. In fact, my fatigue was pretty good. I did have some dizziness and vertigo in the mid-morning and again in the afternoon. Still questioning blood sugar or something related to food, honestly.

Sensory:

-Pins and needles: 7, mainly feet
-Tingles: 0
-Dysesthetic pain: 9, horrible, horrible. Legs mostly, also tongue and a bit on bottom lip, right side
-Paresthesias: 8, sometimes the dysesthetic (freezing/burning) pain turned to more of a feeling of electricity. Shocking! And I had the weird band feeling on my forehead again, which is a mild problem and would have rated paresthesias at a 1 on its own.

Numbness: 3
-Vision: 4, still no change
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 4
-Fine motor: 3
-Weak muscles: 4
-Spasticity: 4

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 2, worse when pain was severe
-Confusion: 1

General:
-Fatigue: 4
-Balance: 2
-Sleep: 0, got 9 hours
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 4
-B: 0

Emotions: Fine. I was not happy about all the pain, but I was still happy in general.

Hung Over

I was so sick all day. Dizzy, weak... just not a good day. Hopefully tomorrow is better. I took the amitriptyline tonight, but absolutely no Vicodin all day. I did have quite a bit of pain, but I need to know which medication is making me sick, and I chose to stick with the amitriptyline for now.

I also want to mention that I have had an odd pain in my left mid-upper back. It stabs then lets go. Sometimes a few times in a brief period of time, sometimes one and done. Hope it's not my kidney.

Oh, I forgot to mention that I no longer have temperature sensation in my feet. The ice-cold metal of the doctor's probe felt neutral or even warm to me yesterday. However, I can still feel pinpricks.

Sensory:

-Pins and needles: 7
-Tingles: 1
-Dysesthetic pain: 9, some in my tongue. :( Of course still in my feet and legs, back, thighs... yeah, it stunk. Sometimes the feeling of my clothing was unbearable. Like when you have a sunburn and you wear something with lace.
-Paresthesias: 1, I have a weird band on my forehead that I guess I will throw under paresthesias, because it doesn't seem to fit anywhere else. Sort of numb feeling, though-Numbness: 2, definitely having issues with my left fingertips, my tongue, and of course parts of my feet 
-Vision: 4, same old same old
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 4, which I attribute to medication, not MS
-Sore muscles: 4
-Fine motor: 3
-Weak muscles: 5
-Spasticity: 4, backs of legs

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 1

General:
-Fatigue: 8 all day, but I felt great in the evening, more like 4 or 5
-Balance: 4, and again, I believe this was more medication than MS. I had been doing better with my balance the night before last--I did not need to hold onto things to walk to the bathroom. Last night not so much.
-Sleep: 0... uh... 10 hours... 10 and a half... It was so hard to get out of bed this morning!
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 2
-B: 0

Emotions: Irritable! Most of the day, I was irritable, but I was better in the evening. Actually, I perked up around 6:00 and was feeling much better in general. Less tired, not dizzy at all. Just pain. Whatever was affecting me wore off. Or the steroids kicked in! Today was the last day, and I only took 10 mg.

Low On Drugs

I am on Vicodin, which feels remarkably like being on Benadryl. Why, one might ask? Because my dysesthetic pain was absolutely awful at 5:30 this morning, and then it kept coming back. Horrible. Seriously horrible. I emailed Dr. Rick, who had me come see him this afternoon. He prescribed amitriptyline and Vicodin.

Amitriptyline is an old anti-depressant that apparently is not really used an an anti-depressant anymore. It can help some people with nerve pain. Hopefully me. And hopefully without bad side effects. I just read some about it online... looks like my dosage is pretty low, nowhere close to what would be prescribed for depression.

I am supposed to take Vicodin as needed. I questioned dependence, but Dr. Rick said I would not become addicted. He is thinking of this as a way to get through coming down off steroids. (Because I told him that the pain began the day after my first course of steroids, and now it has worsened and added new territory while coming off my second course of steroids.) Also that I am using it to take the edge off pain. I don't know. But I have been in a lot of pain, so I am willing to give it a go.

Blurred vision is listed as a side effect of both amitriptyline and Vicodin. I did laugh a bit at that. My vision still stinks from the steroids. Dizziness and sedation are also listed under both. So we'll see. I was dumb, because I took the amitriptyline with dinner instead of an hour before bed. Ugh. Need to improve at following directions. My thinking/judgment was maybe not the best today.

So although I have taken both meds, I think the sedating effect I feel right now is probably from the Vicodin. I do not think the ami is going to work that quickly. And I only took 10 mg. Vicodin is a classic drowsy-maker, right? More likely that is the culprit right now.

So that kind of stinks. I absolutely could not take this and go to work. Too tired and dizzy--my balance is worse. Maybe I'll try cutting the pill in half next time. I am not sure it even helped with the pain. Well, I guess it helped. Just not a whole lot.

And Dr. Rick is still stumped on my vision problem. He told me to take 10 mg of prednisone today and tomorrow, then done. So I will end up skipping two days of 20 mg, which is what I would have taken today. Probably will not make much of a difference, but hopefully my eyes bounce back soon. It has not really bothered me, because I know where I am going here in town. But at one point today, I was looking for a building, and struggling with reading names and seeing numbers was frustrating. I think the only reason I am tolerating it well is because I assume that it will get better soon.

Well, on to my daily data:

Sensory:

-Pins and needles: 8, mixed with the freezing/burning pain
-Tingles: 0
-Dysesthetic pain: 9, only because I hesitate to put a 10 on anything. But wow, it was take-your-breath-away pain. And some in my bottom lip. You know, even my clothes make this pain worse.
-Paresthesias: 0, don't remember any, but I mostly remember feeling pain.
-Numbness: 2, same as yesterday. Tongue numbness is so nutty.
-Vision: 4, same as yesterday I think--a bit worse?
-Nerve pain: 6
-Hearing: 1

Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 3
-Weak muscles: 3
-Spasticity: 3, and I did not do my stretches. Forgot.

Cognitive:
-Processing: 2
-Memory: 0
-Attention: 1
-Confusion: 2

General:
-Fatigue: 5 not counting right now--drugged right now
-Balance: 4 (but 6 right now on the Vicodin, lol)
-Sleep: 5, almost 7 hours but got up several times. Couldn't go back to sleep after my roommate's alarm woke me at 5:30.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 6
-B: 6

Emotions: Kind of stressed and upset about the pain, but not terrible. No tears. ;)