Saturday, December 12, 2009

Getting Better is Exhausting

Ugh. Sorry about the long silence. I've had all sorts of problems with new medications combined with horrible insomnia, so I have not felt up to writing. This post will be written in spurts, so there might be some repetition or jumping around of ideas.

My progress is so slow that on a day-to-day basis I feel like I'm not making any progress. When I compare myself now to how I was before the lumbar puncture and blood patch (when I was working full time), I'm still in pretty bad shape.

However, when I compare myself now to how I was immediately after the research study (when I was REALLY bad off), I can tell I have made some improvements. Here are some improvements:
  • I am able to shower more often. When I first got back, I was so sick and weak that it would take every ounce of energy to shower that I only did it twice a week at the most (sorry if that's too much info).
  • I can get in and out of bed without help, and I no longer spend all day in bed. Initially, there were times that I needed my husband to help me sit up in bed so that I could eat a meal or take pills. I now have more variety and spice in my life and spend time sitting or lying on the couch instead of lying in the bed!
  • I can drive myself to all my medical appointments. Driving is still a physical challenge. On days I have an appointment, I rest as much as possible before the appointment and usually end up taking a nap after.
  • This week I started doing some light chores like putting dirty dishes in the dishwasher and twice getting the mail (we live in an apartment complex, so our mailbox is a short walk from our place). These are big accomplishments!
  • My headaches have decreased, probably as a result of some of the medications, which unfortunately I have now stopped due to side effects (see below).
Unfortunately, I still have a way to go. I'm still running low grade fevers. There have been a couple of occasions that my temperature was a normal 98.6 or a close 98.8 (and of course I would get excited), but then by the next day it would be up again.

I'm still exhausted and not sleeping well, and I'm sleeping a lot. I'm still having trouble breathing. My throat hurts on and off, and I've got a blister on what remains of my left tonsil. My lymph nodes still hurt, and my memory is a mess. I feel like the forgetful fish Dory in the movie Finding Nemo. It's funny, but not.

So much has happened since my last post that this post would become a book if I tried to explain everything, so I'll just try to cover the main points (not necessarily in chronological order):
  • I was having difficulty breathing (see symptoms from last post) and thought it was from my asthma, so I went to my asthma specialist to get checked out. My lungs are completely clear. My breathing symptoms are not from asthma. I was given a name for my symptom: "air hunger."
  • Because of worsening insomnia combined with the sense of air hunger that started around the time I started my new medications, the neurologist instructed me to stop the zonisamide (see last post) and diazepam (a.k.a. Valium) which was prescribed in place of the Soma (muscle relaxant) which was supposed to help my tension headaches. I am no longer on any medications for my tension headaches or migraines.
  • It is interesting that both the Soma and Valium increased my insomnia symptoms to an extreme degree. Both medications usually cause drowsiness. The Soma kept me up 36 hours (see previous post). The Valium did not make me sleepy, and it kept me in a very light sleep when I did fall asleep. I would wake up ever couple of hours. I still say I'm the queen of less-common side effects.
  • The neurologist has temporarily given up trying to treat my headaches, saying that we need to first address my insomnia. Good call. I'm exhausted. He has prescribed Lunesta for sleep, which is supposed to help people fall asleep and stay asleep. I've taken it two nights, and it does seem to help me fall asleep (though I have discovered that it takes nearly two hours before it starts to work); however, I still find myself waking up during the night.
  • In the past, I've used melatonin, valerian, and/or benedryl to help with sleep; however, my sleep problems have gotten out of control since the lumbar puncture. I'm willing to try pretty much anything. It's funny the Soma and Valium, while not specifically prescribed for my insomnia, were so unhelpful.
  • I have started going to physical therapy for my upper back and neck with the hope that it might help with my headaches. I've had one treatment, so I don't feel any difference yet...but I'm hopeful.
  • I have started seeing a Cognitive Behavioral Therapist to see if she could give me any useful techniques for dealing with my newly worsened level of CFS. I've only been to her once, and I like her so far. She knows I'm not depressed and that the CFS is not a psychological disorder. I feel it significant to point out that she herself has Fibromyalgia.
  • I have started light therapy. I bought a travel-sized light therapy light from Amazon and am using it for 30 to 60 minutes each day when I get up. I'm hoping it will help "reset" my internal clock which is obviously not functioning properly.
  • I purchased a cheap eye mask to help block out all light when I go to bed, and I got a "sleep machine" that creates white noise to help mask external sounds that can be disruptive to sleep.
  • In addition to the light therapy, eye mask, and sleep machine, I try to practice good sleep hygiene by going to bed and waking up at the same time every day (I set my alarm clock), but doing so has been a fruitless exercise thus far. I'm hoping if I keep doing what I'm doing along with trying to find a sleep medication that actually works, things will improve in time.
  • I am trying to start the "olympic exercise regime" that the Georgetown doc recommended to me. He suggested going for short walks. In the first week, I would go for a one minute walk every day. In the second week, I would go for a two minute walk every day. In the third week, a three minute walk every day, and so on. Up to thirty minutes. If I have trouble, I could repeat a week. That is, if I'm ok with three minutes but not four, then I would stick with three minute walks for another week.
When the Georgetown doctor told me to stay out of work until January and my regular doctor agreed, I decided I would do everything my doctors suggested...even if I was skeptical...because I really want to get healthy. I also started doing my own research. The sleep machine, eye mask, and light therapy were my own ideas, but pretty much everything else has been suggested by them.

I am not a big fan of prescription medications because I've been on so many over my lifetime. I rather prefer natural remedies; however, all the supplements I'm on are obviously not enough at this point. I have an appointment with my regular doctor on Monday, and I want to talk to her about possibly taking antiviral medication.

I've read that some CFS patients have had some success with long-term antiviral medications. Multiple blood tests have shown elevated levels of EBV in my system (and occasionally elevated HHV6). Most of my symptoms are very viral-like, as well, so I'm hoping she'll consider a prescription. If not, I'll keep plugging away. There are also a few more supplements I want to ask her about.

Oh, and my Short Term Disability has still NOT been approved. It's still pending, so that's better than being denied. I started the process on November 20. I'll post an update if/when anything happens.

I'm too tired to write any more, so this will have to do.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, mild headache, low grade fever 99.3 (99.7 yesterday), blister in throat, sore lymph nodes under arms and in neck, tired muscles, poor memory and thinking problems, air hunger, area of blood patch has still not healed and is itchy.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

P.S. Happy Hanukkah to those that celebrate!


Sue Jackson said...

Wow, Alyson, sorry to hear you're still suffering so much, though it's a relief to know you've had some improvements.

Actually, Valium is known to disrupt normal sleep cycle patterns and cause light sleep - it's why it's rarely used anymore. Lunesta works for some, but you should be able to find something that works sooner than 2 hours. When my regular sleep meds (not sedatives - trazodone and nortriptyline) aren't enough, like if I'm badly crashed, Ambien helps a lot. Unlike old sedatives (like Valium), it doesn't affect sleep stages. You might try it. It might help the headaches at night, too.

Good luck - I hope the improvements continue.


cfswarrior said...

You're doing all the right things. I too have a white noise machine and bought black out curtains for the bedroom which does help. I found that nothing else helped with sleep except for a very low dose of liquid doxepin and klonopin.

Hopefully your doctor will agree to try an antiviral.

Hang in there!

cinderkeys said...

Good luck. I hope short-term disability doesn't take as long to approve as long-term!

Sylvia said...

Keep up the good work! Hopefully it will all come together and you'll be able to enjoy some Christmas/New Year festivities before heading back to work.

If I may make a couple of little suggestions about sleep, I've found one thing that really helps me is those orange foamy earplugs you can get at pharmacies. They don't cut out all noise but for some reason having my ears plugged sort of sends my brain the signal that it's time to turn inward and ignore outside noises. I sleep much, much better when I put them in, and they especially stop me from waking up too early in the morning.

The other thing I've found helpful is aromatherapy, especially jasmine (super expensive) and lavender (super cheap). I just dab a little on my chest—not too much because strong scent can be a distraction in itself—just a fraction of a drop. They've actually studied this and found that both work to promote deep sleep but jasmine is a little better. I find the lavender works better when I'm kept awake by sore muscles.

Sweet dreams!

upnorth said...

Wow, reading your post brings back (sad) memories of when I was first sick. You seem to have such a positive attitude despite the struggles. I hope your improvement continues. I find for sleep, the white noise really helps...also, I don't think you can get it in the U.S. but I take gravol to help me get to sleep - it's over the counter.

Hang in there Alyson, and know that you're not alone.

Jo said...

Wow, you have so much going on. It seems so unfair that this relapse should have been triggered by the stress of doing the study. I hope things start to improve for you.

Adding my two cents' worth, I find sage tea very soothing for the throat. It has antiseptic properties. You can gargle with it lukewarm, or just enjoy it as a tea.

Hope you feel a bit better soon.

Beatrice M. Desper said...

Good luck, Alyson. There was a time when I showered every other day. That was my exercise.

Renee said...

I am so sorry you are going through such a serious relapse...sure hope things continue to improve slow but steady for you. Your posts are a real good reminder for all of us as to how unpredictable this illness is.
You are in my thoughts as you deal with this set back with such courage.

JamesD said...

wow I can sure relate to how you're feeling. I too am no longer on medication. I had so many crazy bad side effects (ask me sometime about the savella ordeal), i finally gave them up cold turkey.
I am taking a sleep aid from swanson vitamin- I take one "sleep essentials" and then three "full spectrum- valerian, chamomile, hops". They are reasonably priced and about the only thing that helps me sleep, and for me, no side effects.
I tried rozerem, ambien, etc. but they didnt work well at all. and i had both valium and xanax prescriptions but the crazy thing was they actually made me anxious and kept me awake. The complete opposite of what they are supposed to do!
Good luck alyson, keep plugging awway I am sure you will find something that works for you!

alyson said...

Thanks for all the comments and suggestions! I'm mentally too tired to respond to each of you individually, but I appreciate all the support. I have tried or will be trying some of the suggestions (I've already started using earplugs).

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