Friday, December 18, 2009


My sleep-wake pattern is so disturbed at this point that I'm getting a little loopy and am craving even just one night of good sleep. This problem has gone on more than two weeks. I'm sure this lack of good sleep is NOT helping my health. I'm running a fever of 100.0 today.

The Lunesta (which I took for a few days) did not work for me. It helped me fall asleep, but I kept waking up throughout the night. After the Lunesta I was prescribed a high dose (30 mg) of Restoril, which didn't help after four nights of taking it. It did not help me fall asleep, and I ended up waking up "wide awake" around 4:30 or 5:00am after having fallen asleep around midnight.

If you're keeping track, so far the following medications have NOT helped me sleep:
  • Trazodone (caused nasal passages to close)
  • Soma, prescribed for tension headaches (kept me up for 36 hours!)
  • Valium, prescribed for tension headaches (made me wake up every one to two hours)
  • Lunesta (did not help me stay asleep)
  • Restoril (did not help me fall or stay asleep)
The newest sleep med I'm going to try is Ambien CR. My first dose is tonight.

I've had trouble sleeping in the past, but my sleep patterns got worse after the lumbar puncture and MUCH WORSE after the Soma incident. Compared to now, my past insomnia was nothing. I used to be able to take over the counter supplements or meds to help me sleep. However, my brain chemicals and internal clock are so crazy now that nothing (including natural remedies, good sleep hygiene, and prescription meds) so far has worked.

In other news...
  • I received a letter yesterday that let me know my Short Term Disability claim was approved through November 30... but they now need all my medical records including all test results from every treating physician from November 11 through present (before they just needed info from one doctor).
  • I went to my regular doctor on Monday, and she reiterated that I should continue to stay out of work at least until January.
  • My doc also prescribed seven days of the antiviral medicationValcyte for me because the blister on my throat appeared viral and not bacterial. She also ordered new EBV and HHV-6 tests to see if my levels are high enough for me to take Valcyte for a longer period. There is some research that shows some people with CFIDS improve on Valcyte.
  • Turns out the area of my blood patch was infected, which is why it hadn't healed after over a month. My doc prescribed a topical antibiotic, and it has already helped a great deal.
  • I will be seeing a pulmonary specialist for the "air hunger" I recently started experiencing; however, I've read that this symptom is not uncommon in people with CFIDS, so I doubt the doctor will find anything wrong with my lungs. My breathing tests at the place that treats my asthma already confirmed my lungs are clear.
  • The Cognitive Behavioral Therapist told me she didn't think I needed regular counseling at this point because I am not currently depressed or experiencing excessive anxiety about being chronically ill and seem to have developed good coping skills. I've got two more appointments with her, then we'll schedule on an "as needed" basis. I have battled depression and not handled my disease very well in the past, so it's good to have outside confirmation that I'm doing ok mentally.
  • The physical therapy has helped my upper back pain a bit, but the daily headaches have returned since I stopped all the meds the neurologist prescribed.
  • I've kept up with my "olympic training regime" so far, taking daily walks to the mailbox (roundtrip: 3 min).The Georgetown doc told me to walk even on days that I feel awful to work on reprogramming my brain. Starting Monday, I'm going to increase to four minute walks...maybe...or I might just stick with my mailbox walks. I'll see how I feel.
That's all for now.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, headache, nausea, low grade fever 100.0, blister in throat, sore lymph nodes under arms and in neck, tired and sore muscles, poor memory and thinking problems, air hunger.

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


p1nkg0dess said...

I'm sorry nothing has worked for you for insomnia--not sleeping is the absolute worst! I hope you are able to sleep restfully soon!

Jessica said...

Hi Alyson, Sorry to hear that you're still not sleeping! That really sucks. I hope the Ambien CR works for you. I found it very drugging to the point that after taking it I couldn't even roll over!

I'm concerned that your Georgetown doc wants you to push to walk on the days you feel awful. Personally, I think that's bad advice. Let your body dictate what you're able to do, otherwise you're starving your mitochondria and can do damage, ie., a relapse (according to what Dr. Bell has told me.) I speak from experience, too, unfortunately, and wish someone had warned me of the dangers of pushing when I felt sick, back when I was doing a lot better. Hopefully, once your sleep schedule is better, you'll start to feel better. I'll be thinking of you!

Laurel said...

Sorry you aren't sleeping well... that is such an aggravating part of this illness! I'm sure you probably have, but ever try low dose Elavil and/or Klonopin? I take that as well as melatonin and valerian as needed. Sometimes it works, sometimes not. :) Hopefully Ambien CR does the trick for you.

I agree with what Jessica said.. be careful not to push, especially on your bad days.

upnorth said...

The chestache - breathing pain is the quintessential CFS/ME symptom for me. The worse I feel, the worse the chest ache and breathing pain get. However, like you my lungs are clear - no flem etc. Does yours feel like infection??? I just ask as to me it is not a muscle or bone type of ache, but more like an infectious type of ache. I hope you get a good night sleep soon. I wish they had the over the counter gravol works so well for me.


Hi - the Ambien controlled-release just might be the answer; I take mine with a warm glass of milk (calcium is good for sleep).

I also play this 'rain' 24/7 - the link is:

It's soothing. I also turn on the 'sleep blog' I made for my insomnia. The link is:

Give those a try - play both at the same time; they layer nicely, and I have this going by 5 every evening.

I also watch no television after 8 in the evening, or I'm more apt to be awake much longer.

My doctor said to get up as early as I can on a daily basis; go to bed early - relax for about an hour with my music, then turn off the television at 8 p.m. - just use my soothing music and sounds.

Also, I do slow chants in my head; sometimes it's just saying a short little child-hood poem - I try to say it very slowly - over and over - to hypnotize myself and clear my head.

Renee said...

Like Jessica, I too, pushed through things to the point of damaging my mitochrondia. We know that pushing only sets us up to get worse~ and for many it also puts us into a wired but tired cycle where we can't relax and sleep.
I am so sorry you are going through so much. Hoping you soon are able to get back to resting well and sleeping even better!

AK said...

Oh, Bizzle! I do hope you feel better soon.

What's the story with your short-term disability though? Thru November doesn't seem sufficient to me. Will you be seeking long-term disability, as well...or is that considered double dipping?

Let me know if there's anything I can do.

cinderkeys said...

Good luck with it all. I don't have any suggestions, but I'm heartened to hear of a CBT psychologist who doesn't deny the existence of the disease.

Jo said...

I'll just add my two pence worth and say it seems like you get a paradoxical effect with medication. I don't get this myself but have spotted it in other sufferers. I have no idea what causes it but suggest it may be because your body is so sensitive it over responds?

May I make a suggestion? Take a few days break from monitoring your symptoms. This is tiring in itself and, in my case, increases anxiety. A few days missing data won't make that much difference.

And - also advice I should take myself - stop being so hard on yourself! All the best from across the sea.

Sue Jackson said...

So sorry you're suffering so much still, Alyson.

I hope the Ambien helps, but you should be aware that while it might help you fall asleep and stay asleep (I take it occasionally and it works well for that), it won't improve the quality of your sleep. Since you had side effects from the trazodone, you might want to ask your doctor to try another med of that type - maybe amitriptyline or nortriptyline? Those types of meds actually get at the root cause of CFS sleep dysfunction and normalize the sleep cycle so you get the deep stage sleep you're missing.

I hope Valcyte helps you. Be aware it often has severe side effects, though. Watch for any worsening of symptoms. If you get side effects, you might try Valtrex or Famvir - both are antivirals like Valcyte but much less toxic with almost no side effects. I've tried all 3!

Please don't hesitate to contact me if there's anything I can help with. You're in my thoughts. I hope you improve and get some good sleep soon!!


alyson said...

Thanks so much for all the continued support and advice! My next post is a doozie, so I'm keeping this post short.

Nicky Reiss said...

Hi Alyson,

I feel I have to comment: the Georgetown doc is - to put it politely - an ignoramous. It is extremely - extremely - dangerous to push oneself when you have ME (CFS); do not do anything more than you feel capable of. This stuff about "reprogramming your brain" is absolute crap. You're not depressed; you have a serious physical illness. I would suggest dumping the Georgetown doc.
Check out - if you haven't already -; very long winded, but there's some good advice in there. Also look at if you haven't yet.
Stay off work for as long as you need to. Doing too much can cause permanent damage to your health.

alyson said...

Hi Nicky (and Jessica and Laurel) ~ I'm so sorry to upset you about the "olympic training regime"... though it's nice to know that my online friends are looking out for me!

The term was meant to be silly. I suppose I wasn't as clear as I should have been in my post. I didn't mean to imply that the Georgetown doc told me to exercise when I was too sick to get out of bed. He basically meant that on days I didn't feel like going for a walk, I should try to go anyway.

He only meant for me to to what I was physically capable of. He recommended starting one-minute walks every day for a week before moving up to two-minute walks if I was up to it. Not any sort of huge exercise routine. Since I had not been bedbound prior to the study, I didn't think there was any reason why I couldn't do this program. As long as I didn't experience any post-exertional malaise, I would be fine.

There is research out there that shows that learning a new physical task helps to grow new brain matter. You can google this research. While walking is not a "new physical task" for me, doing it on a daily basis as an "exercise routine" is a new task. There are also other CFS experts who recommend light exercise to prevent deconditioning which can sometimes make CFS worse.

I feel the need to point out that the Georgetown doctor never thought I was depressed or had any sort of mental illness. He has a great understanding of CFS as a physical illness which is why he is studying the proteins in cerebrospinal fluid in CFS patients among other medical data.

On a side note, the Georgetown doc is not my regular doc. I participated in a research study on CFS which is how I met him.

I've actually started enjoying my daily mini-walks. My husband sometimes accompanies me, which is nice.

I hope this clears things up a bit. Thanks so much for reading my blog and looking out for me.

alyson said...

P.S. Thanks for the websites! Also, here's an article about exercise and CFS

Graham said...

Hi Alyson. I can definitely relate to the frustration of sleep disturbance. I had been grabbing a snooze whenever I could get myself to fall asleep, but I've recently given that up in favour of only sleeping at night. I only get about 7 hours which I'm pretty sure isn't enough, but I'm hoping to slip into some sort of pattern. Afternoon naps have began to leave me feeling really terrible, so I've quit doing that!