Need help from the sleep experts

Discussion in 'Fibromyalgia Main Forum' started by herbqueen, Apr 7, 2010.

  1. herbqueen

    herbqueen New Member

    Hello everyone -if you've read my desperate posts- I've been spiraling down with major neuro MS/type plus a whole lot more /chronic lyme symptoms. I deperately need to get sleeping to stop the spiral the disease progression. I'ts been 4months w/o sleep- and i't has gotten worse from a few hours on trazadone some times more (broken)if I was lucky to pretty much nothing. Traz stopped working and it leaves a horrible taste in my mouth all day/burning esophagus.

    I also have major anxiety from what's going on, nerve irritation in my neck /brain that is hard to describe (makes me stop breathing it's so bad), and jerking/twitching....etc. Can't come down at night and I think brain inflammation if that makes sense is keeping me from sleeping.

    Neuro who says it's not MS prescribed gaba pentin-I'm at one week on 300 mg/night and so far it is helping with the nerve agitation in my neck/brain-but i think it's made my sleep even worse/non existent but hard to tell since it was non existent before. I'm supposed to go 2/day this week. I've added trazadone usually at 1:30 am since not sleepin gand can sometimes get an hour or 2/sometimes none.

    Lyme message boards recommend klonopin for sleep, anxiety , jerking etc- though not sure it would help with nerve issue-but I'd take sleep right now over that. Neuro did not want to prescribe that saying it could be abused/addictive?

    Any thoughts /suggestions?

  2. herbqueen

    herbqueen New Member

    prior to this horrific neuro explosion have not taken any prescription drugs- so not experienced --

    I know in the past my sleep cycle was so sensitive to supplements, herbs everything-sometimesI wonder if i'm making matters worse. And on top if it knowI have liver detox phase I/phase II issues.

    melatonin, 5 htp ,can't take herbs/increase dizziness and they never helped me sleep in past-
  3. HeavenlyRN

    HeavenlyRN New Member

    Well, I certainly wouldn't describe myself as a sleep EXPERT (!) because I also have trouble sleeping. But I will tell you my experiences.

    I was on gabapentin for several years for FM. I got up to 900 mg. at bedtime. It seemed to work for quite a while, but then my rheumy switched me to Cymbalta (when it first came out - I think he wanted to see how it would work for me). I didn't have any of the side effects and, if I remember correctly, I wasn't having any sleep difficulties at the time.

    I also have a presecription for Klonipin. But I'm not using it very much any more 'cause it really knocks me out!! If I use it, I have to take it about 3 hours before bedtime because it takes about that long to kick in.

    About 2 weeks ago my rheumy put me on Remeron. I'm having problems with my kidneys now and she wanted me to take something that wasn't bad for the kidneys. This one also knocks me out - but like the Klonipin, I have to take it about 2-3 hours before I want to sleep. And, if I take it too late in the evening, I have a hard time waking up in the morning.

    I don't think I've given you any real good information, but hopefully others will cime in with their thoughts.
  4. herbqueen

    herbqueen New Member

    I would so prefer something natural- but i think I'm in a pretty bad state right now and sleep is not my own issue/got dizzy stuff/pressure going on in brain and jerking also keeping me up- My nervous system is on overdrive 7X24/not coming down.I tried gaba last week dring the day and nada.

    ltheanine has opposite effect on me when i tried it in the past=stimulating. same with valerian-i'm such a complex case!

    is inositol really calming? before this neuro explosion melatonin was working for me but now nothing tried 1-3 mg-nothing. Do you think less is more with melatonin?

    what is lorzepam? is that the same as ativan?-were your probelms falling asleeping or staying asleep-I have both right now

  5. herbqueen

    herbqueen New Member

    I should say I am really not sleeping what so ever right now-maybe a light dream state for an hour or 2 .
  6. heapsreal

    heapsreal New Member

    first you need to get your pain treated properly, pain worsens sleep, maybe try tramadol with gabapentin, see how this go;s with your normal sleep meds. If still not sleeping, as someone mentioned earlier avanza is pretty good, but for a definately good sleep look into seroquel, start at 25mg a night and increase it 25 mg up to 100mg or until u get the right dose that knocks you out. I find it knocks me out for 10-12 hours, so i dont take it all the time, i use it once a week for 'catch up' sleep. Now seroquel is a med used in bipolar and schizophrenia, in much higher doses then used off label for sleep, which i believe side effects u may read about are to do with high doses and regular use. It is used for hard core insomniacs and i find sort of resets the mind and im then able sleep using other means again for awhile, i tend to get that tired but wired feeling and the more tired i get the harder it is to sleep, seroquel just turns the switch off and i have had great relief and no side effects using it intermittently. Good sleep can also reduce your pain. When nothing else is working seroquel is it!

    hope this helps,
    from a hard core insomniac,