posted
I mean like really serious insomnia...like not sleeping at all for days at a time? I have tried a lot of things out of desperation...Ambien 10-20mg, Lunesta 3mg, Klonopin .5-1mg, Ativan 1-2mg, Doxepin 20mg, Remeron 15-30mg, Trazodone 50mg, Seroquel 25mg, Melatonin 1mg, glass of warm milk, prayer, exercise, relaxation CDs, more prayer. Many actually combined at the same time to try to elicit some sort of effect.
I stunned doctors in the hospital last year (before I knew I had Lyme) when they could not knock me out, or if they did, only for a couple hours. Is this even possible?
The only 2 things that worked were Ambien (got 5 hours, but then it lost its effect after a couple weeks, even after doubling dose) and Remeron (got a nice sleepy feeling and 8 hours, but stopped working after 3 weeks). Seroquel was a very bad one-time experience, after it made me feel like the bed was flipping upside down, and only got me an hour. After my trials sleep drugs, I have not taken anything and was hoping that sleep would start to reset itself.
Anyone seen sleep problems this profound? I only started antibiotics recently, after a year of not knowing what this was, and assuming that Paxil had somehow suddenly messed up my sleep after 3 years, although I slept beautifully on it AND before it (could sleep all day if you let me, often did). Ended up going off of that last year to see if it was the problem and after giving it a lot of time, and still nothing.
Thinking back, perhaps sleeping so deeply through alarms, classes, natural disasters, neighbors house on fire, etc. was probably not normal, but felt so good anyways. Although it got annoying for family members who had to always remember to come in and physically wake me up b/c I couldn't on my own.
I am just so confused on how my sleep problems basically came on overnight last year. One night I went to bed, and found that I could no longer sleep. Before, I sped home from work so I could go straight to bed. That was one of my first symptoms, following an uncomfortable pain in my left abdomen I had been experiencing for a couple months that woke me up. Everything spiraled out of control after that, profuse sweating, panic attacks, ear popping, etc.
The strangest thing was that I had been having increased panic attacks the past few years, but I could always end up falling asleep afterwards out of exhaustion. Now, no panic attacks, as it actually feels like my adrenal response has somehow shut down, but no sleep either!
Anybody have any clue what might be going on? From what I read this sounds like Bart, but I tested negative for Bart through Igenex and Quest. Could it be another strain of Bart that they don't routinely test for (I'm in the Midwest)? I am really, really restless and agitated as well...can't sit still at all.
The other strange thing is that I don't EVER appear tired or fatigued at all and haven't felt a nice, sleepy feeling in over 8 months. I have had doctors try to peg bipolar on me for this, although none have ever been able to prove it without any other signs of a mania (I'm practically on my hands and knees begging for sleep at night).
I got off Klonopin over a month ago, after slowly tapering over 6 months from 1.5mgs/day to zero. The sleep is no better or worse than on it.
On days I actually sleep (every other day?) I can get about 3 hours of light, broken sleep, where I dream the entire time, and then lay there awake for a while kind of finishing the dream in my head. It is almost like I can ONLY get REM sleep.
It is the strangest thing...it is almost like I am laying there awake having a daydream the entire time I'm sleeping. If I wake up, and then go back to sleep, I continue where I left off in the dream. The other day I slept on the couch and heard the dishwasher (in the next room) running in the background of my dream the entire time I was sleeping.
Anyone have any sleep that was THIS bad, or have the same dream thing going on? Is it possible to have Lyme for a while and flip-flop from hypersomnia to terrible insomnia overnight?
Any suggestions to prolong sleep as I get going on my antibiotics would be appreciated.
**Sorry, I just realized how much I ended up writing on this topic. It helps pass the time when I can't sleep.
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Sleep problems are one of my biggest problems also. I went 3 weeks straight once with no sleep at all... Have also done the every other night sleep thing, as well as the sleeping all the time and needing someone to physically wake me up because alarms & such did not work. So yeah, I'm right there with you on the insomnia thing...
The ONLY thing that seems to make a dent in my sleep problems is Progesterone (oh, and if I go on steroids, the first week is heaven because the sleep is completely normal). If you're a female, then the progesterone is an option for you; if not, then maybe you need the testosterone or DHEA...
If you do try the progesterone, make sure you get the natural, bio-identical type instead of the synthetic. There is no cancer risk with the natural version (but there is cancer risk with the synthetic version).
I sure hope getting rid of these darn bugs helps cure the insomnia issue for both of us!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Oh, forgot to add, some things make my insomnia worse:
B-Complex - I'm ok with tiny amounts and they must be taken very early in the day. I can't do the big 50 or 100mg type of doses of any of the B vitamins except B12...Niacin and B6 are the worst offenders as far as contributing to the restlessness, jitteriness and insomnia, and the effects can linger for several days.
Potassium supplements - for some reason, they give me too much hyperactivity...even if I take them early in the morning.
Vitamin D supplements - same as the Niacin & B6...can't sleep for days. I've been experimenting with topical Vitamin D3 to see if it gives me some Vitamin D without making me so darn hyper...I'm deficient in D so I know I need it, and the D2 version of Vit. D doesn't do anything to increase my blood test levels of Vitamin D.
Get thyroid & adrenal hormones checked - if you're making too much cortisol or your thyroid is hyperactive, then this may be part of the sleep issue for you.
I've also found I sleep way better if I can breathe cool air instead of hot air. If I'm too hot, I can't sleep even if I don't feel like I'm too hot...hard to explain...
Dehydration can also affect brain chemistry.
And yeah, I tried all the sleeping meds and they didn't work for me either...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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It's good to know I'm not the only one up at this hour :-)
You beat me with your 3 weeks. I believe my record is only 2 weeks.
I am going to take your advice and go see a naturopath to get my hormones tested again.
Earlier this year my Testosterone was low (I'm a dude), but this was at my PCP's office, and it was still technically within lab range, so they didn't do anything.
Looking it up online, however, it turns out I have the level of a sick 90 year old man...haha! Didn't know this could cause sleep problems. Can they do anything to supplement hormones when you have Lyme...I thought I heard steroids are a no-no?
Thyroid was fine, but I need to get adrenals checked. I've been taking B12 but no B Complex. Been also taking 1000IU D3. Neither seem to hurt sleep any worse than it is already on days I take them.
Cold air has helped some. Over the winter last year, I slept with the window cracked. During the summer, I can only turn the A/C down so far without freezing other family members out of the house LOL!
Otherwise I will keep up the antibiotics and hope for a break soon!
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Support Adrenals Glands and treat infections.
It will resolve in time (though it truly can takes years in those with stage 3 and 4 adrenal exhaustion)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Steroids (adrenal hormones) are only a no-no if given in immune-suppressing doses. Adrenal support doses are not intended to suppress the immune system, and thus are safe for those with Lyme. Basically, you don't want to take more adrenal support than what the body makes naturally.
As far as I know, there are no known issues with taking other hormones (testosterone, thyroid hormones, etc.) and Lyme. Be sure to discuss this with your Lyme doctor though...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Yes, I had that problem. I did not sleep AT ALL without medication.
The combination that we finally found that worked was Lunesta and Lyrica. My LLMD found that Lyrica helped patients reach deep sleep. Lunesta alone didn't work.
My LLMD told me that I had to take them because my body couldn't heal if I didn't sleep. When I got better, I weaned off them over a period of six months.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Good to know its just not me and its the bugs! What does everyone do at this hour if TV is just too stimulating? There is only so much of the ceiling that I can watch!
Thx
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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Bluemoon
Unregistered
posted
A similar story to mine, where insomnia happened overnight, and complete lack of deep sleep.
But for me, ambien get's me my deep sleep, and 3mg twice a night is usually enough. I can sleep without it, but it is long, drawn out, shallow sleep.
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posted
My naturopath says you can go fairly high on the melatonin safely if you can tolerate it. It is routinely used in high doses for cancer patients in his practice.
I take 15 mg timed release along with 7.5 mg sublingually to get me to sleep. I also take a 3 mg lunesta with zanaflex.
I sleep well about half of the time, but every now and then, i wake up at the same time each night after just 4 hours of sleep.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I will not sleep at all without meds.
Have you consulted a sleep doctor?
Posts: 3905 | From USA | Registered: May 2007
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Ambien changed my life even before I knew I had Lyme. I would go nights in a row, sometimes 4 without sleeping an hour. I would watch each hour tick off on the clock. Of course I would get drowsy at 5 or 6 am only to have the alarm go off at 7. I however looked and felt tired, and achy. I would sleep the 5th night out of sheer exhaustion,and then not sleep again for a few nights.
I would love it if something more natural worked. But it doesn't so (for now) I have stopped feeling guilty. If it stops working for me, I stop taking it for a few days (hey I went without sleep for 20 years) and then it starts working again.
I hope you find something that works for you. Sleep,even drugged sleep is wonderful.
Posts: 1728 | From USA | Registered: May 2011
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posted
I've had the same problem,started 3 yrs ago. I would fall asleep only with complete exaustion. Then would wake up after a half hour or so. And that would repeat all night. That and rapidly progressing anxiety were my first symtoms. Temazepam/Restoril may be the answer. I take 30mg before bed along with 30mg Mertazapine/Remeron. The Temazapam puts me to sleep and the Mertazapine keeps me asleep. Ambien or Ambien CR never had any effect at all.
-------------------- Ross Posts: 4 | From Ormond Beach, Fl. 32174 | Registered: Aug 2011
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