Miserable

The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.

Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.

PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.

I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.

I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.

Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)

I hate MS.

It's Official--Yes, Again

Monday night Dr. Rick declared me in another flare, with the probable lesion in the thoracic spine. I began steroids on Tuesday--five days of 100 mg prednisone. Dr. Rick did not want to go higher due to my history of bad reactions.

Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.

It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.

One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.

The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.

Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.

Trauma?

I wonder if I should make an appointment with Dr. Eric to talk about the SCS surgery. Obviously it sucked, but I did not think it was psychologically damaging until today. Someone asked me how I was feeling, and I started to cry when I thought about the surgery. I considered the possible psychological trauma of the event as I wrote my blog post about it, but I did not feel traumatized at the time. I was surprised, because I thought it was odd that I could be cut open while awake and not be traumatized. Maybe it took some time to hit me.

Or maybe I am just tired. I did not sleep well the last two nights. And yesterday I wore myself out helping an underprivileged kid with a school project. And a Wii project. :) I cannot believe I did not sleep after that!

Tonight I am going to take half of a muscle relaxer, along with my Ambien.

I do not know if I am really traumatized by the surgery or just worn down by the pain and fatigue. I feel like I need to cry. Gosh, I am exhausted.

Sleep Is Improving

I wanted to add an update on the delightful topic of sleep. I am sleeping better than I was last month. I wonder if it is related to the general healing since that time, a new med, or what. I seriously doubt it is from the advice of the sleep specialist, except for falling asleep faster. I am definitely falling asleep quickly--within 15 minutes.

{Click to enlarge}

My total sleep time is a little more, but I am still waking up more than I should. Certainly more than I want to. Five times each of the last two nights, for example. And I think I may be waking up more often. I am pretty dumb at night, sometimes almost not writing on my paper. I wonder if there are times I do not write the wake up time and just go back to sleep.

So... I am happy that I am falling asleep faster and generally going back to sleep quickly when I wake up. But I still want to sleep better!

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...

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.

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!

Need. Sleep.

Today I felt the most sick I have felt in a while, probably since the last time I was on steroids. Well, the last time I had a full course of steroids--the one day in July does not really count.

Last night I slept an hour, woke up, another hours, etc. All night long! But on the positive side, I fell asleep in less than an hour, and I went back to sleep within 20 minutes each time. Part of the problem was that I was hot--still trying to figure out the temperature setting that will work now that I am downstairs. But part of it was just me, sleeping shallowly. At least I am out of the "take two hours to fall asleep, sleep two hours, and feel totally awake the rest of the night" habit. Hopefully things are moving in the right direction, as my nurse likes to say. But I am still exhausted, feel SICK, and want to cry. Maybe I should, because it often helps. Crying and eating sometimes help.

I do not sleep when I am on steroids, so maybe that is why I feel similarly to those times.

My morning was terrible, the afternoon was more bearable, but then I have gotten worse again since getting home from work. Thank goodness I had rides today. This morning I absolutely would have stayed home if I had not had a ride. But I enjoy going to work, absolutely adore my students, so I want to be there.

I have not heard anything from the sleep clinic! I will email Alyssa to see if Dr. Rick has filled out the referral paperwork. Or if he has even received it.

I guess I had better take Ambien again tonight. I can go without it tomorrow night. Ugh, except that tomorrow is my shot day, and I want to sleep through the side effects. There is never a good time to miss sleep!

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...

A Pile of Crazy

I am still sick. This flare has been so nasty with the fatigue. The vertigo has gotten better, but I am still dealing with trigeminal nerve pain around/behind my right eye, shy bladder, weakness in my right arm, and weakness in my left leg. My walking is worse. Stairs are getting pretty sad!

My left leg is so much worse today. Spastic, painful, weak. I thought it was going to give out on me.

My left ear is getting better! No stabbing today for two days, just aching. However... Over the weekend, my right ear got sore. It has not gotten to stabbing, but when I realized there was junk coming out of it, and the junk smelled nasty, I started putting drops in that ear, too. I did not even go to the doctor. I was not about to miss work and pay $35 for it. I know the clinical study would like me to do that, but they will have to get over it.

Another issue is my idiot brain. My brain is seriously so dumb lately.

Case in point, I ran out of my reflux medication a week ago. I looked for a new bottle but could not find one. So... For some reason, I did not go to the store. I thought I had gotten the medication and lost it. I did not know what to do about that, so I did nothing. It took a few days for the lack of medication to affect me, but by Friday night I was really feeling it. I am ok as long as I am sitting up, because the problem is hiatal hernia. If I lie down, my stomach acid spills right out into my esophagus. Saturday night I had some trouble falling asleep. Sunday night I took two hours to fall asleep and then woke up every hour or two. No!! Not again!! Then last night I took four hours to fall asleep and woke up every half hour. I got four hours of sleep... not four hours straight: four hours total.

The problem with not sleeping enough is that it makes my brain dumber, and it makes my body not work as well. Bad cycle.

I was sort of unmotivated to take the reflux medication, because it is a strong drug--I did not respond to several other meds. Figures. I have been on it for three years, and I do not want to take it forever. My internist wants me off it. But the esophagus is not made to hold stomach acid, not to mention what happens if it escapes the upper esophageal sphincter to heads into my lungs. I looked up YouTube videos on how to cure hiatal hernia. I think I can do it, but it might take time.

Meanwhile, I need to sleep. I decided to renew the medication. Hope that I was remembering wrong and had not already gotten it and lost it. Beg the pharmacist to give me more.

About 5:30 this evening, I remembered the medicine. Problem: I could barely walk, and I was exhausted. My best friend asked if I wanted her to drive me. I could not decide whether to go or just forget about it for another day. (Idiot brain, see?) While I laid there trying to make my brain work, trying to understand the choices and the consequences of the choices, my friend got my shoes and pulled me up. So I went to the store... and found that I had called in the prescription 8/31 and had not picked it up! I guess my brain was dumb then, too.

But I am not sure the reflux was the only barrier to sleeping. Maybe stress, too? But not being able to sleep makes me stressed. I sure hope I can sleep tonight. Of course I took my reflux medication the minute I got it, but I think it takes a few days to work. I cannot remember--I have missed maybe two pills in the last three years!

Sleep... I need sleep...

Oh, church. I was able to handle the piano thing better. Of course, I prayed. Things went much better, because the regular music leader was back, and she loves to talk. I think she also loves to sing, but she definitely likes talking better. That worked out great for me.

I forgot to bring a pad for the bench. Hard surfaces increase my pain and can make me lose feeling in my left foot. So every surface in the Primary room is out. Maybe I will bring in a chair from the RS room. Or maybe I will just rest on the floor--that is what I did last Sunday. After I had recovered from music time enough to get up. All that effort made me tired and dizzy, so I just closed the piano and put my head down after singing time. It was nice. I am back in a corner, so no one is paying attention.

I tried Nuvigil again yesterday. That might have something to do with my sleeplessness last night. I don't know. I was exhausted by 8:00 pm, so I am not sure. I made notes on the day. Data! Since my brain is so dumb, I need to make a lot of notes if I want to remember things. It does not matter if it is something I am really interested in or was really good or bad, I may forget.

9/10/12
9:15 am: Took 250 mg
10:00 am: Felt a bit more energy
12:15 pm: Dizziness began (maybe my usual fatigue?), heaviness--fatigue
12:45 pm: Came home to rest
1:00 pm: Dry mouth began, continued until
2:00 pm: Anxiety began. Feeling of heart racing sometimes but not sure it really was.
2:30 pm: Back out to work. On edge with anxiety.
3:00 pm: Still have somewhat more energy than usual BUT legs tired, harder to walk. Shaky/jittery feeling, esp. hands.
3:30 pm: Anxiety worse, dry mouth worse
3:45 pm: Home again. Can't do any more--feeling shaky, tired/heavy limbs. Still anxious but tired at the same time. Feel like I want to cry or freak out, no particular reason.
6:00 pm: More tired
6:30 pm: Headache but not as bad as last time
7:00 pm: Feeling much worse. Dizzy, fatigued, a little nausea--wearing off and I'm feeling "normal" again?
7:30 pm: Dry mouth a little better. Fatigue worse.
~1:00 am: Dry mouth went away
*I was able to move around more to follow my students. But the difference was not marked. The anxiety was not constant--it waxed and waned from 2:00-6:00. No hunger again today but I knew to watch the clock for when I ought to eat. Ate lightly because not hungry.

So I have to decide if Nuvigil badness is better than the usual badness. The jury is out. Plus there is the risk of dependency--addiction scares me. But I am going to try this drug again on Thursday.

Clinic appointment this Friday. Nine months on the drug. It is absolutely not working, but I remain hopeful.

Back On the (Weak) Juice

Today my neurologist put me on steroids again. (Head in hands...)

I am nervous, although I am not sure exactly what I am worried about. The main problems I have had from steroids were not sleeping (three hours and awake for the rest of the night) and joint pain. And blurry vision, but it was still functional. Joint pain was when I was on IVsolu-medrol, not prednisone, and this time I am taking prednisone.

This time I am on a much lower dose, though: 100 mg for three days then a five-day taper.

In addition to the prednisone, my neurologist prescribed a different sleeping medicine, Sonata. I am not sure it will be a good fit for me, because I read online that it only works for four hours. That is how long I got from Ambien, which works at least seven hours for most people. I will give it a few days. It looked to me like extended-release Ambien might be a better fit for me. I will ask about it if Sonata does not work.

Wow, I am feeling really anxious. I guess I am still not comfortable with steroids. I feel really sick while I am on them. However, they have helped my symptoms in the past, and I am struggling so much with my MS right now. I am in so much pain. It is worth a try.

I am worried that my sleep problems will get worse, but I am reminding myself that I worked through it in the past. I think I called out sick from work once or twice the last time I was on steroids. I was dizzy, not safe to drive, and absolutely miserable... but I survived, and then I felt better than before taking the steroids.

MS is not enjoyable.

Back With a Bang

I am practicing cognitive-behavioral therapy with my psychologist, and it helps me handle my emotions. MS involves such ups and downs, it can be overwhelming. Right now my MS is on its way down.

I am having trouble sleeping. That began a month ago, at the same time as I had an increase in pain. Causal relationship? I am not sure. I suspect there is something underlying both problems, not that pain is causing the sleep problem (pain increased a day or two before the sleep problem showed up).

I have had incredible, mind-bending pain in the past and not had trouble sleeping. That makes me think that the pain is not the root of the sleep problem, but I cannot be sure.

My neurologist advised me to increase my tramadol, and he prescribed Ambien. I did not want to take it! I tried diphenhydramine (Bendryl, Sominex) first, at 50 mg, and it did not help a bit.

My sleep problem is that it takes me much longer to fall asleep than usual--a couple of hours instead of a few minutes. If I focus really hard, I can fall asleep after about an hour. The problem seems to be something like attention. My attention wanders, I think about things (not worrying, just thinking), and I forget that I want to sleep. I am exhausted, but I forget to sleep. If I can remember long enough and keep thoughts out of my mind, I can fall asleep.

If that were the only problem, I would be fine. I go to bed early enough that I have plenty of time to sleep even if it takes longer to fall asleep.

Unfortunately, it gets worse. I wake up every hour.

When I took 5 mg of Ambien, I experienced no change in my sleep. I tried it for two days.

When I took 10 mg of Ambien, I slept 4.5 solid hours, then I was up every 30-60 minutes.

Upon waking, I can go right back to sleep within five minutes. So I get a total of at least seven hours of sleep, but it is not restful sleep. I have done a lot of research on sleep since developing this problem, and I learned that I am probably not getting past level 1 or 2 of sleep. I need to get to level 5, which is REM sleep.

I feel like I am getting some rest, but not enough. It is not as bad as when I have been on steroids; I sleep about four hours and then stay awake the rest of the night. Then I am a zombie. I have been a zombie sometimes in the last month, but mostly I am just fatigued.

Sometimes the fatigue is so bad I feel nauseated or dizzy, or I might get a headache.

After 10 days of the problem, after making sure my sleep hygiene was excellent, after realizing I had absolutely no control over the problem, I developed anxiety. And depression.

Many times I have wanted to die. Too much pain, everything too hard. I am still working, and it is surreal to feel the way I do and still get my job done.

Yesterday I developed new problems: weakness in my right arm and pain and tightness in my right hip. Sometimes my right hip is extremely painful and feels like it has a deep bruise. It is okay when I am resting, but it hurts when I move it. I know that I did not injure myself. As I stretch and use it, I get better, but it tightens up again if I rest. Catch-22.

I will do a post of a "Thoughts Log," which is one thing I learned to do for my psychology homework. I want to get out every possible anxious thought. I want to sleep! I will do anything that might possibly help me sleep.

Getting Worse... Sigh

I had the pleasure of visiting the gynecologist. My vagina is still there (good thing they check every year). And my yeast infection is not.

Sensory:

-Pins and needles: 5, left let and right side of tongue (NEW SYMPTOM). Rather painful.
-Tingles: 2, up the outside of my left forearm and hand
-Dysesthetic pain: 7, sometimes just left leg, sometimes burning skin on both thighs, front and back. Clothes hurt sometimes. And sometimes ok!
-Paresthesias: 5, electricity, some prickles like bugs jumping onto me

-Numbness: 2
-Vision: 0-1
-Nerve pain: 4
-Hearing: 0? I don't know... never quiet enough to tell. I'm using a fan at night, so it is not even quiet at night.

Motor:
-Walking: 1
-Sore muscles: 3, still that left shoulder

-Spasticity: 2
-Weak muscles: 5, doors keep getting heavier!

-Endurance: 5

-Fine motor: 1, seems like I have a tremor in the morning, and it gets better in the afternoon. I wonder why.

Cognitive:
-Processing: 4, my word finding was bad. "She needs to mess with the uh um the you know thing. (What thing?) Here in um the starter sourdough starter."
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 7
-Balance: 0, not counting in the dark

-Vertigo: 0

-Sleep: 5, I got 7 hours but very broken up. Woke up at least half a dozen times.

-Bladder: 1, from medication
-Proprioception: 1
-Swallowing: 1
-A: 2
-B: 0

Emotions: I don't know if it is emotional, but I cried from exhaustion and frustration this evening. For a few minutes. Yes, I get it was emotional.

Catching Up

Well, well, how the mighty [daily] blogger has fallen behind.

I don't know what happened! Forgot. Busy. Oh, well.

Friday was a big day for neuropathic pain.

Saturday was fine in the morning. Went to shrink--good session. Then went to grocery store, which wore me out, came home and collapsed for a couple of hours. Came back to life, went to friend's house for dinner and felt half alive. Then fully alive--practically normal energy for a couple of hours.

Sunday was good for a while, but late afternoon and evening were tough--high fatigue.

Monday was a pretty good day.

Mornings have been rough in general. Probably worse with the time change.

Yesterday started off rough (morning, natch), but then I ended up having a good day.

Today was also rough then good.

I finally read that neuropsych report. I did well, although I know that I would have done better before MS. She did make the comment that environmental distractions are probably influencing my memory lapses, and that the real world is not a distraction-free, quiet environment like the testing environment. More and more, I am noticing that she is right: distractions often cause me to lose track of my thoughts or what I was planning to do. That is not all there is to it, but it is a bigger factor than I thought.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 6, was 9 on the fronts of my thighs/hips early this morning, 3:00-6:00 am
-Paresthesias: 3, electricity in my lower limbs

-Numbness: 2
-Vision: 0, it has been fine. Just blurry when hot or tired.
-Nerve pain: 2
-Hearing: 1, noticing periodic worsening during the day, as well as the constant buzz that is mostly noticeable when it is quiet

Motor:
-Walking: 1
-Sore muscles: 8, I seem to have pulled a muscle in my left mid/low back. Maybe I slept on it wrong.

-Spasticity: 1
-Weak muscles: 5, having trouble opening doors in public buildings

-Endurance: 4

-Fine motor: 0

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

General:
-Fatigue: 2
-Balance: 1

-Vertigo: 0

-Sleep: 7, about 6 hours, not all together. I was awake for quiet a few hours, slept a little, up again, sleep a little more. Too warm in the room.

-Bladder: 1, just medication effects, I think
-Proprioception: 1
-Swallowing: 0
-A: 2 bc gm yesterday due to B7
-B: 0

Emotions: Fine. Maybe a bit irritable because my back has been bugging me all day.