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...

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!

First Days on Cymbalta

Cymbalta has been a little rough. Insomnia breaking through the Ambien, anxiety, lack of appetite, and a touch of nausea. The nausea has been better today. I decided to take the pill in the morning instead of at night, hoping that helps with the insomnia. So I will skip it tonight and take it tomorrow morning.

The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.

My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.

I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.

If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.

Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!

When It Rains

It is raining today, which I love. However, I do not like raining and pouring in the area of my health.

I have a UTI!

So now I am taking ciprofloxacin. When I added it to my medication list online yesterday, it came up with an interactions warning. Actually, it came up with several interaction warnings, but one concerned me: That class of medication can increase CNS activity. People with CNS disorders should probably avoid it.

Huh?

The website interaction checker said that medication can cause anxiety, hallucinations, restlessness, insomnia (!!!), seizures, paranoia.... I realize that it is a possibility and not a certainty, but I did get nervous when I saw insomnia and anxiety on list. I started to email my neurologist, but I took a step back mentally and thought it through. I searched for other people with MS using cipro, and there are many. And it is listed on the NMSS website as a common medication for UTIs, which occur frequently in people with MS. I decided that I could just stop taking the drug if I have a problem.

Speaking of insomnia, I still have it. But I think I am getting better? At least now I feel mentally tired in bed. I have been feeling physically tired but not mentally tired, just feeling awake. Now I am very tired all around. However, I took Ambien CR last night after trying on my own for an hour. It took 30 minutes to fall asleep with the medication, and I slept an hour, woke up, then went back to sleep for seven hours. Not bad. I was really tired getting up--definitely wanted to sleep more. Darn work.

Speaking of anxiety, I am tons better. I am accepting that I need to use sleeping medicine for now, and that I will keep giving myself chances to sleep on my own. And I will pursue the sleep study or appointment with sleep specialist. Yesterday I emailed back and forth with my nurse for a while, and she brought up the sleep study. I explained that I cannot make the appointment; I cannot even speak to anyone. There is only an answering machine for that clinic, and I already left a message with my info and my neurologists info. They should be faxing him. Alyssa did not think they had, and she said she would follow up. She is great.

I am also much less anxious because of my psychotherapy session on Saturday. It was very helpful.

In addition to the UTI, my right ear is bothering me again. It feels "off" and kind of sore. When I touch the skin or bone near my ear, it hurts. I am not pursuing treatment right now. I will give it some time. Maybe email my nurse.

In addition to the UTI and ear pain, my burning pain has been bad. Worse than ever, actually. And it has spread to new areas. It began to increase Saturday afternoon, and yesterday it was absolutely off the charts. I have had the burning pain previously on the fronts of my thighs, my hips, my buttocks, my back below my waist, my knees, my groin, and the bottom of my stomach. Yesterday I had it in those places PLUS my upper chest, arms (particularly the outside, ulnar nerve area), upper back mildly, and hands. It was so bad on my hands. The backs of my hands. This burning pain is back today, though blessedly a bit milder than yesterday. However, today it is on the tops of my feet, especially my right foot.

The burning pain is probably the worst MS symptom. Yesterday I was considering whether the burning pain or the fatigue is the worst. Tough call. But the burning pain gets to 9/10 pain, easily. It makes me want to die. Each minute is excruciating.

Yesterday I took my tramadol every four hours, and I took Vicodin in the evening. The Vicodin did not help. Tramadol helps for about two hours (bringing the pain down to an 8), but then it was right back up.

I wonder if I am more sick because I worked so hard Thursday, Friday, and Saturday. We were doing some work around the house, and although we had tons of help, I still pushed myself and did a lot. I absolutely wore myself out. I was shocked that I still could not sleep!

One good thing is that I have not had vertigo in a couple of days. I stopped taking amantadine on Saturday--maybe that was causing it. The reason I stopped that medication was because I wanted to make sure it was not causing my insomnia.

[Lack of] Sleep

Here is what my night was like:

10:00 lights off

10:30 sleep (on my own, after 30 minutes--this is really good)

12:30 awake

2:45 still awake, take an Ambien (although mere mortals would not dare to take Ambien past 11:00 pm, I know this it will not last anywhere close to 8 hours for me)

3:30 back to sleep

7:00 awake

7:30 back to sleep

8:15 awake, back to sleep

9:00 awake, back to sleep

9:30 awake, got up

Thank goodness for a day off, so I could sleep in. If not, I would have gotten up after the Ambien wore off, having a total of 5.5 hours of sleep. Which is like -100 for a normal person. The only reason I could fall asleep on my own after only 30 minutes is because I had four previous nights exactly like this.

Yesterday was similar:

10:00 take Ambien

10:30 fall asleep

12:30 wake up (right after two hours! on Ambien!)

1:00 back to sleep

2:00 wake up

5:30 still awake, take Sonata (which helps you fall asleep but not stay asleep)

6:30 wake up, back to sleep

7:30 wake up

Not pretty. What is that, 5 hours? That is like -200 for a normal person (it is on a logarithmic scale, as near as I can figure).

The previous night was similar. The two nights before that were worse, because I did not take sleeping medicine. On those nights, it took more than two hours to fall asleep in the first place. And I am absolutely exhausted when I go to bed. In fact, I am absolutely exhausted and barely able to stay awake after 6:00 pm.

Yesterday I got scared, because it has been several nights in a row, and I was getting sicker. My motor skills are worse, my brain is not with my at all, and of course I feel horribly. Fatigue does not begin to describe it. My temperature regulation is way off.

I have no idea what happened. I had sleeping problems like this for almost four weeks straight, which began suddenly and ended suddenly in July and August. So... Why is it back? Well, I am going through a period of stress, which began on Saturday. I wonder if that is a coincidence. But I think the worst of the stress is over, and my sleep problem is not.

Maybe it is the weather change? But I do not think it is warmer upstairs. You would think that it would get cooler in the fall, but not necessarily. I use the air conditioning, which is based on the downstairs temperature. If the downstairs temperature is lower, the air conditioning does not turn on, but it may still be needed upstairs. I have it set pretty low, at 66 degrees. The problem with my air conditioning is that it does not hold a temperature well. I am always amazed in some homes where the AC goes on and off frequently to keep the temperature steady. Not mine! It lets the temperature vary by several degrees downstairs, which could mean as much as 8 degrees upstairs. So it is usually too hot or too cold.

But again, I do not think it has been that hot upstairs. Not hot enough to keep me up all night. I do not feel anxious until about 5:00 am, when I realize that it is not possible for me to get a decent amount of sleep. Then I get anxious. But that is a result of the sleep problem, not a cause of the sleep problem. 

Maybe I am anxious and cannot feel it?

What I do feel is miserable.

Yesterday I emailed my neurologist to let him know what is going on and to request Ambien CR, which is supposed to be longer lasting. He called it in after the pharmacy closed last night, but I will pick it up today. If I can afford it, that is. No generic. I hope it does not cost more than $35. And I hope he prescribed a full 30 days' worth. If he did not, I will leave it at the pharmacy and ask him to call it in again. If I am going to buy a medication, I want my moneys' worth. 

My neurologist recommended that I see a sleep specialist. That is perfect, because I ASKED FOR A SLEEP STUDY 6 WEEKS AGO. At least we are on the same page now. I mean honestly, if I only get 2-4 hours from Ambien, there is something wrong. My brain is waking me up--strongly. 

Yesterday I called to make appointment with a sleep specialist, and I had to leave a message. The machine stated that I will need a referral, that they would fax paperwork to my physician for him to fill out before I could be seen. Hopefully they are doing that today. I think I will call...