Sleep Study

Whoa, I have no blogged about my sleep study!

I had EEG leads stuck to my scalp and face, EKG leads stuck to my chest and legs (checking for restless legs.. cool), a band around my stomach, another one around my check, plus a power pack on my check and a band around my chest to hold it on. I also had a sticker on my upper lip, sticking in my nose, to which was attached a cannula and tubing. Sensing my breathing.

All the EKG and EEG wires were banded together behind my head and plugged into a device on the bed. Then I was expected to sleep. That did not really happen.

My sleep technician was really nice. Of course she could not tell me if they saw any problems with my sleep--besides, oh, not sleeping. She tried to make me feel comfortable there. She talked with me while she was setting me up (which took quite a while), asking about my health and stuff. She did not know anything about MS, so I explained it. She chatted with me about work and stuff. Just about my life. Easy to get along with and very calming, which was perfect for the sleep center.

For the first time, I did not cry when I told someone I have MS.

Studying Sleep

Two more nights until my sleep study! And it is officially approved by insurance (took until Tuesday), so it is set. I am sure it will still cost an arm and a leg, but it is worth it.

I am going to upload a picture of my sleep diary. Now I knew that I have been struggling with sleep, but wow, adding up the hours just now made a big impact on me.

{Clickable}

OK, the picture is bad. I don't feel like getting up to turn on the lights, and the flash of the camera made a glare. The hours of the day are across the top. I make vertical lines for sleep/wake, diagonal lines for lying in bed awake, and shading for sleep. On the right side, I recorded the total hours I slept and the number of awakenings (not counting last awakening for morning). Ignore the top line, because I took Ambien CR that night.

Yeah, so 6:30 is better than 2:45, but it is still not functional for a person with MS. For me! That one day I got 8 hours of sleep, but it was still broken up. Not good. Also, I cannot sleep until 8:45 on a work day, so I would not normally have been able to get that much sleep. My alarm usually would go off at 7:00/7:30.

In related news, I am off tramadol as of today. My sleep specialist speculated that it could affect my sleep, being an opioid. (Despite me being on such a low dose that I had to cut the smallest pill on the market in half.) I have been stepping down slowly, and I had no trouble coming off it. I would say that my nerve pain in my left leg/buttock has been worse, but I will give it some time. The sleep specialist said that I would know whether the tramadol was affecting my sleep within three or four days.

Not related but totally awesome: The increased Trileptal has taken care of my trigeminal nerve pain! When I saw my neurologist on Tuesday, he increased it to three times daily. I am only taking 150 mg, which is not a lot. Dr. Rick was ready to increase from 150 mg 2x daily to 300 mg 2x daily, but I asked for the smaller increase. I can always increase more if needed.

Today was rough, which should not be surprising if you look at the sleep I got last night. But I had great days yesterday (Thanksgiving) and the day before--despite doing quite a bit of cooking. My pain has been down, and my fatigue, while not allowing me to live close to the way I did before, has been much better. I am able to sit up through most of the evening.

Tonight I am really trying to stay up until my eyes are closing, like I did yesterday. Which turned out to be 10:30. Whatever. It is so hard to stay up. It means fighting your body's need for sleep until you lose the battle. What makes it so hard is that the pain increased as the night wears on... agh...

Good Day!

I had a good day today! I love life without that horrible fatigue. My fatigue level is at maybe 4 today. I suppose that if I had to go to work it might be worse, but I did make it through all of church without issues. The piano pedals did not kill my leg muscles.

I sure hope the good times keep rolling.

Let It Out

My shrink said I need to let the anger out somehow. I get so angry when normal people complain about being sick. Or complain about other problems that are really nothing [compared to a degenerative disease].

I feel like saying, "Oh, you think your flu is bad? Imagine if your head felt like that every day--and you still went to work."

One person really bugs me sometimes. I know that he does not mean to, but he does. He says that I can tell him how I am doing, but I feel like I cannot. I do not like to complain in general, and definitely not if I do not talk with a person much.

Here is what bugs me: You look a lot better. You seem better today. You sound better. You seem like you feel okay today.

Here is the deal: I usually am not better. I am usually busting my butt to put on the Normal Show.

And if I am better, it is not much better, and it probably will not last long.

When I hear that I seem better, it ticks me off. It makes me feel sad. It invalidates everything I am going through. And what can I say? "Well, actually..."

I try to tell myself that it is just ignorance, not something that a person is doing to hurt me. It does not help very much, though.

Oh, right, I was letting it out.

That makes me really annoyed when I hear it. I have tried to educate that person, but I guess it was not enough. It takes so much time and effort to get people to understand this. I do not know whether it is always worth the effort or how to tell when it is. I do not have effort to spare.

They Took It Back!

My sleep study was canceled, because my insurance would not preauthorize is. They said that they need up to five business days. Whatever!

The secretary said it is usually two to three days for the approval. Unfortunately next Thursday, Friday, and Saturday are full, so my appointment is next Sunday, November 25.

Sleep Specialist

I saw the sleep specialist a few days ago. She is a PhD nurse practitioner working at a sleep clinic. I will call her Goola.

She is not sure why my sleep has become light and fragmented, but she would like me to try behavioral strategies for it. She said not to get in bed until I am so tired I cannot keep my eyes open. Maybe 2:00 am. I was surprised by that advice, to say the least. Usually you read that keeping a consistent bedtime is the best way to sleep well.

Goola said not to stay in bed awake more than 20 minutes. I protested that I am way too tired to get up. She said that I must train my brain that bed is for sleep. It does make sense, but she needs to keep in mind that MS involves significant fatigue. I may not be able to get out of bed when I am extremely fatigued. But I said that I would try.

I asked what to do if I wake up after I have slept (at 2:00 am or whenever I am too tired to keep my eyes open). She said that she is confident that I will remain asleep after I have fallen asleep.

Goola wants to check my thyroid and iron levels. Deficiencies in those can negatively affect sleep. Fasting blood draw... Boo.

Yesterday someone called me about scheduling a sleep study. Unfortunately I missed the call, because I was at work. The reason that was very unfortunately is because the sleep clinic works on a message-only phone system. You can never speak to a person! So I have to hope that they call back at a time I can answer the phone.

Last night I stayed up until 12:45 am, and I was so tired. But I did not fall asleep until 1:45! I slept 1:45-2:30, 5:30-6:30, and 6:45-7:45. So obviously Goola's prediction that I would stay asleep was incorrect. I will keep trying, though.

I emailed Dr. Rick and Alyssa to update them on that and on how I am doing with the trigeminal nerve pain that appeared on Monday. Honestly, I am doing a lot better the last two or three days. The Trileptal seems to be working! My face pain is a lot better. Before it was peaking at 10 and holding steady around 8. Now it is peaking at 8 and holding steady around 3-6.

The most amazing and confusing change is that my fatigue has been better the last few days. Well, yesterday I got enough sleep, because I took Ambien CR. But today I got less than three hours of sleep (not even three hours straight), and I am handling it so far. I am tired.

I have to admit that I have some issues today that I think are from lack of sleep. Tremor in my left hand, weakness in my legs, spasticity in my legs.

Alyssa called today to check on me, hear about the sleep appointment, and confirm which medications I am taking right now. It was nice to talk to her. She said I sound better than when she saw me a week ago. We also discussed the sleep study plan: visits every four weeks for the next few months, with quarterly visits after that. I still need to do the cognitive testing, and I guess the MRIs. I wonder if Dr. Rick will have access to the MRIs. He normally would not.

Oh my, I am getting really tired now. How on earth can I survive until 1:00 am to go to bed? I hope I can sleep tonight.

As I was getting ready to post this, I got a call from the sleep center. I have an appointment for tomorrow at 9:00 pm!

Hold the Phone...

More changes!

Because of my delicious, new pain, Dr. Rick said to hold off on switching from gabapentin to Lyrica. He wants to wait until I am more stable (I did not even laugh when he said it). He gave me a new medication called Trileptal. Another seizure medication, which often helps with trigeminal nerve pain.

I either have trigeminal nerve pain or "ice pick headache." He is not sure which, but he is going with trigeminal nerve pain meds to see how I respond. I began taking Trileptal today. It is the kind of drug you have to take everyday and build up a steady state with, not like the tramadol, where I can take more or less depending on how much pain I have.

Speaking of tramadol, Dr. Rick again reminded me to cut it to 25 mg. Ideally, he would like to see me off it, because I have quite a few drugs that can interact. Tramadol, gabapentin, Trileptal, and Ambien CR. And Vicodin, but I will not need to take that anymore, since I stopped the Avonex. Or I hope I will not need it again. It stinks at helping nerve pain, so probably not.

I have had a weird headache today, on the top of my head. The trigeminal nerve pain started in the afternoon, but then it got a little better. Maybe the Trileptal is already working? Whatever, I will take it.

So that is the bad news. The good news is that I will stay in the study! I know: How is that good news?

Basically, I have three options:
1. Continue in the study with the shots (which I know means Avonex, although technically it could be either Avonex or daclizumab.
2. Continue to be followed by the study, with the regular visits and labwork (all free). I could pursue any line of treatment I choose but would have to pay for the [pricey] MS drugs.
3. Leave the study altogether.

Option 1 is pretty much out. It would be nice to have free MS drugs (the shots), but free is not so great if they are not working. The only real advantage to option 3 would be not driving into the city every month if I were feeling okay and did not need to be seen. But I think the benefits of free visits when I need them (um, all the time) and free labwork outweighs that drawback. So I chose option 2.

I have not heard from the nurse yet about my next appointment, which should be next week. Oh, and I have not heard back from my internist's office about psychiatrist referrals. I guess I will add that to my to-do list for tomorrow (like I maintain a to-do list...).

Not Crazy

On Friday, Dr. Rick asked me about my mood, as they delicately call it. I told him that I wish I could die but do not have plans to hurt myself. He asked why, and I explained that I am sick and in pain, and that I cannot do most of the things I like to do. Dr. Rick wanted to admit me to the hospital, because he wants psychiatry to see me, and being admitted is the only way to make that happen quickly. He also wanted to have my pain monitored and try to get it under control, but I think mainly he wanted to prevent me from killing myself.

I was adamant that I do not want to be hospitalized.

1. I already have trouble sleeping. The last thing I need it machines beeping and people making noise 24/7.

2. Dr. Rick is changing my pain meds (gabapentin to Lyrica). The pain is one of the reasons I want to die, so if that gets better, I will not want to die. I pointed out that my severe depression began immediately after Alyssa told me that there was nothing to do for my fatigue and little to do for my pain. (I did not dime her out but said "at my last appointment I learned that...") Fix my pain!

3. I would be anxious in the hospital, because I do not trust them. Doctors, technicians, etc. I do not trust that they are identifying my problems correctly or that they will listen to me. Or that I will be able to express myself well.

4. I would be bored in the hospital. There is nothing to do there! I can kill a lot of time on google, but not that much.

5. I cannot afford to miss work.

6. I do not want a psych label, because I do not want doctors to think that my physical problems are in my head. I have enough trouble getting doctors to listen; I do not need that label following me.

I did not tell Dr. Rick all of that, just reasons 1 and 2. Dr. Rick stared at me intently, obviously trying to decide whether to trust me. He decided that he could. Maybe.

Dr. Rick pointed out that this is a vulnerable time. I am changing six medications this week, all of which can have psychoactive effects. Also, I have reacted poorly to medications in the past. Dr. Rick said that he would allow me to make these medication changes on an outpatient basis only if I maintain strong communication with them. He wrote down the titration directions for gabapentin and Lyrica, along with the other changes. He trusted me to understand what to do, but he did not completely trust me to tell them if my mood dropped. I had to promise to call him if I felt the urge to kill myself, and he wrote down his cell number on the directions.

I already had it.

I have never used his cell number, because I have never feel like my problems are major emergencies. I cannot imagine calling if I wanted to kill myself. A person who wants to die is not going to call. A person who calls is looking for attention. I have engaged in attention-seeking behavior when I was young, but not anymore. 

My shrink made the same request weeks ago, that I call her if I want to die. Of course I did not. How would it help? She cannot make the pain and fatigue go away. She did say that she knows someone who is truly suicidal would not call, because they want to die, not be talked out of it.

I would consider calling a friend, I guess. Maybe the MS Society hotline. Maybe a suicide hotline. Maybe Alyssa. Right now I have no plans to kill myself, mainly because I do not want to scar the person who finds me. And I do not want to leave my bug alone.

The bottom line is that I am clearly of sound mind, so Dr. Rick could not admit me against my wishes. He wanted to see me back in two weeks, though. And he insisted that I make an appointment with a psychiatrist. He also referred me to a pain specialist.

Good-bye Avonex, Hello Aubagio

So much to say!

I went for my regular appointment last Friday and ended up dropping out of the study. Avonex was not a good fit for me--it is obviously not helping.

My neurologist gave me the choice of Copaxone and Aubagio as the next logical steps. Let's see...

Copaxone
-On the market since 1996
-Daily subcutaneous injection (although the manufacturer is applying for FDA approval of a higher dose given three times per week)
-Immunomodulator
-Commonly causes site reactions like pain, redness, and hard lumps
-Commonly causes fat breakdown under the skin, making your thighs and stomach dimply
-Can have cardiovascular side effects, along with many others
-May reduce relapses by about 30%

Aubagio
-On the market since October 2012
-Daily pill
-Can cause abnormal liver tests and hair loss (but apparently not a ton of hair loss)
-May reduce relapses by about 30%

I chose Augabio. Wouldn't you?

My neurologist is not confident that anything is going to work for me. He said that my disease characteristics are similar to a subgroup that do not respond well to anything. Tysabri is a possibility in the future. I am JC positive, which puts me at higher risk for serious complications, but I would still try it. Matter of fact, I would try it now. Some people actually feel better on it. The best I can hope for with other meds, including Aubagio, is to feel the same and get worse less quickly than I would otherwise. Another medication I could try is BG-12, which is an oral medication expected to be FDA-approved early next year.

That is not the only med change up for me. He is transitioning me from gabapentin to Lyrica, reducing my tramadol (I know: huh??), and trying Celexa instead of Cymbalta. I am still open to trying Cymbalta in the future if the start-up phase were slower. He did give me a low dose of Celexa, 10 mg. I started it yesterday. It makes me feel weird in a not-good way. And I think it makes me feel sick. But that is hard to say, because I also have...

New pain! In my face! It began on Wednesday or Thursday and was about a 6 until it suddenly shot up to 8-9 yesterday and 9-10 today. Seem to be trigeminal nerve pain. Ironically, it is commonly called "suicide pain." Like I need anything else to make me want to leave earth. Here is where the pain is...

See the orange lines? My pain is along the one going straight up, the one going to the eye and up to the forehead, and the one going along the cheek to the upper teeth. It feels like someone is stabbing me in the face with a hot poker. My right eye itself kind of hurts, but the really bad pain is above/behind it. It also hurts on the ganglion, the area where the white label line is pointing.

I drew on my face with eyeliner, showing where the pain is, and I emailed a picture of that to Dr. Rick and Alyssa. I know they are not working today, but maybe they will see it tomorrow. If not, I will call.

Otherwise I am the same. My burning pain is holding steady around 6-8. My left foot is killing me, has been all week. That might be getting worse, actually. It is not bad right now, maybe a 6, but it has been hanging around a 9. My walking is the same or maybe better. I had a sore throat this week, but it is tons better yesterday and today.

Today my hands hurt, but not the skin. Feels musculosketal, so I doubt it is from MS. Maybe from Celexa.

I am going to try icing my face...

MS Is BS

I am so angry right now. Irritated. No, angry.

I feel so sick today. This is one of those "like I've been run over by a truck" days. And I am angry! I guess I am angry because I did not see it coming (although I did not feel well yesterday), and I just started to get over a bad one--my fatigue was down to a 7 a lot of the time, and now it is back up at a 9. No, 9.6. Not again! And I am angry, because I am so sick of it. I am so done with MS.

My burning pain has been better the last week. Level 6-8 instead of 8-10. And today it is worse. New area: my shoulders and neck! And another new place... weird... right around my bottom lip. Of course, many burning areas have been that way before.

Last night it was hard to find a comfortable position, because everything hurts. Lying on my left side is out, because my left leg and foot will begin to lose feeling and will have excruciating pain. But my right hip muscle started acting up on Friday, so lying on my right side also hurts. Both nights I tried for several hours to sleep on my own but ended up taking Ambien CR.

But I woke up throughout the night! Even drugged. That is the way is has been for a week, and it makes me nervous.

This morning I realized that, although I want to be able to sleep on my own, it is stupid not to take the medicine right away. If I take it eight hours before I need to get up, then eight hours is all the sleep I will get.. and that is not enough. Not by a long shot. I need to take the medicine right away, and hope to get 9-10 hours of sleep. I read that I should be getting 12-16 hours of rest (not all sleep, but a lot) every day while my body is trying to heal. MS in remission needs more like 10 hours. Ha, I am so not in remission.

The thing that has been disabling me the most this week has been fatigue. It is so bad that it borders on vertigo. It is hard to hold my head up. It makes me a little sick to my stomach.

When I am fatigued, my brain slows down. It is harder to pay attention. Harder to understand people. Harder to express myself. It is much easier to sit and watch, pretend I am listening. Just watching takes energy.

And that issue might be (hopefully is) why I am so sick today. Yesterday I went to a friend's birthday celebration right after church. It was a 45-minute ride--I did not drive--and a 3-hour celebration. I talked, laughed, and had fun. But I could feel myself fading. I felt like I might vomit from the fatigue, from my head spinning. By the time we left, I could barely walk. MS has taken so much. I cannot even have fun anymore.

On the way home, when I was wishing to die, I thought that I must be feeling depression. Like hm, this is worse again, maybe I do need that Cymbalta. And I realized that my emotional state truly is a result of my health. If I have a lot of pain or fatigue, I want to die. Mostly fatigue, honestly--until pain gets to a 9 or 10, fatigue is worse. But if I feel "good enough," like if my pain is 7 and my fatigue is 7, I am happy. Those times are infrequent. Honestly, my fatigue is rarely below 8 or 9.

With my sleep problem already so bad, I do not know if it is a good idea to try Cymbalta again. I am considering going to a natural food store to get empty capsules, so I can half the dose. I know that 30 mg is way too much to start on, based on my reaction last time. But... again, with my sleep being so bad, maybe it would have been bad that week even if I had not taken the Cymbalta. I will admit that the hours straight of panic and anxiety were awful, but no more awful than this burning pain. If the medicine worked for the pain, it would be worth going through the panic temporarily. It did get better after the first few days.  Taking a half dose might help me start off more gently. So I am considering trying again.

I have an appointment at the MS clinic on Friday. Ah, I just realized that I need a ride! Well, I do not NEED one, but if I have one, I will be less miserable. And less likely to get stuck in the city, too tired to drive home.

OK, so clinic appointment. It is just with Alyssa, my nurse. She and I traded some emails last week, and she told me that her mother suffers from a mysterious neurological disease that involves chronic pain. No one knows what the problem is. She understands the psychological impact of this kind of thing, on the patient and on the family. Hm. So there is a good chance that I will cry at my appointment on Friday. I cry almost every day at home, but I try not to cry outside of the house.

I suppose that all the emotional struggle makes my fatigue worse, or it certainly cannot help. But I do not know what to do about that. Would it not be bad to bottle it all up? I do not know.

Today, a really sick day, is one of those times that I am scared for the future. Scared for today. Alyssa reminded me that MS is a heavily-researched field and new treatments are coming to market, and I reminded her that they are not making anybody better. "Disabled less quickly" is considered a success. I told her that I am already hanging on my a thread, that I cannot imagine getting worse.

Cymbalta Wrap-Up

I guess I should write what happened with the Cymbalta.

Bad anxiety and panic first two days. Recurred as dose neared (coming down off the drug) every day. In fact, as the dosing time neared, I felt like I wanted to tear my skin off. I felt crazy.

I was sleeping fine (8 hours) on Ambien CR until the first Cymbalta dose, when I woke up four times during the night. Same the second night. So I tried taking it in the morning.

I took 30 mg on Monday night, Tuesday night, Thursday morning, Friday morning. I opened the capsule and poured half of it (maybe more than half) out on Saturday and Sunday mornings. That was it.

My pain was not better. Probably needed more time. I was supposed to take 30 mg daily for a week, then increase to 60 mg. So I really do not know if it would have worked.

After I went off the Cymbalta, I was sleeping better. I even slept four hours straight on my own one night! (Sunday night.) So I think Cymbalta made my sleep worse, but I am not sure. Wait... I was taking about 10-12 mg of Cymbalta on Sunday. Then I slept Sunday night. Ahhh.... I do not know what to think!

My MS got worse three days ago, and I am sleeping worse. That makes me not want to try Cymbalta again. I do not like trialling a drug when I am not relatively stable. How will I know what was the drug and what was the disease?

Trying to think what the other side effects were. They were mild compared to the psychological effects and the sleep problem. Dry mouth. I do not remember what else.

I think my mood was better, even though I did not reach the full dose. I can tell the difference between then and now. Oh boy. Try this expensive drug again or not? Honestly, I do think about the cost. My shrink says I should ask the bishop to help pay for it. It is pretty expensive, even with insurance.