Recommendations for managing insomnia

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LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/19/2008 8:24 PM (GMT -6)   
Hey Lymies,

Any recommendations for managing insomnia? I can't remember the last time I had a real night's sleep. My doctor prescribed Lunesta, which didn't do anything. Latest offering is the antidepressent Trazadone, which in small doses is supposed to help w/ Insomnia. But, even at the max dosage she allowed (100mg), it's not doing anything. Unisom/Benadryl has helped in the past, but I have to take more than is recommended and I'm nervous about taking it for long periods of time. Am exhausted, would appreciate recommendations.

Thanks!

janem
Regular Member


Date Joined Nov 2005
Total Posts : 423
   Posted 11/19/2008 9:35 PM (GMT -6)   
This was ( and still very occasionally is ) one of my worst symptoms . I went six weeks at the onset on an hours sleep a night . The upside was a very clean house and 30lb weight loss : the downside was not only exhaustion- but a continuous caffeinated jittery panicky sensation. This dramatically reduced , as did the insomnia , when I treated the Bartonella infection with Rifampin . I tried all prescription and non prescription sleep aids during this time to no avail : however a tiny dose of Ativan , which I still take , in combo with a minuscule dose of elavil ( which I no longer need ) used to knock me out : after three hours of watching mindless comedy shows on TV ! Good Luck .

LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/19/2008 9:43 PM (GMT -6)   
Interesting--I started Rifampin (in combo with Azythromycin) about 6 weeks ago--my feet are feeling better and my Bart rashes stopped spreading, but still no sleep. I actually have some ativan, but haven't tried it at night--am also worried that it might interact with Rifampin...Is Ativan OK with Rifampin?

janem
Regular Member


Date Joined Nov 2005
Total Posts : 423
   Posted 11/19/2008 9:45 PM (GMT -6)   
Yikes - did not keep a record of when I started the Ativan , and whether this coincided with the Rifampin. Sorry !! A question for your pharmacist in the am I think.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/19/2008 10:00 PM (GMT -6)   
I followed the "anything to knock me out" plan which included; Tylenol PM, (occasionally Vick's Nyquil), Restoril, a Xanax, and a pain pill (if I had one) and if that didn't do it I might take 1 more Restoril or one more Tylenol PM and if I wasn't out within an hour.... then that was it, I knew I wasn't going to sleep. I usually would put on a pot of coffee, watch old movies (or "Under Our Skin" for the gazillionth time), maybe due a Puzzle book, sometimes clean like one piece of furniture reallly well... write on this site.

I was recently prescribed "Rozerem" for sleep. The pain mngmt. dr. said that Restoril may knock you out, but you're not getting a deep sleep and usually wake up in the middle of the night (which only happened to me a few times)....

And, my new Lyrica rx... seems to be working a little, I can't believe it. I told my husband that my knees and left side of my neck and head still really hurt (ache, crack, grind, etc.), but at least my entire body didn't feel like one big, red, blue green, bruise. And another thing, she believes that the reason the Darvo was working so well for me as opposed to the more potent pain killers was because of the amount of Tylenol that's in the Darvocet. I told her I had been doubling the Darvo dose (which is why my LLDr. referred me to her) AND taking Tylenol. She said that all of the Tylenol could be making my right side hurt. Sooo, I stopped all the Tylenol, and started the Lyrica, I have significanlty dropped the amount of Darvo to about 3 - 4 per day... and NOT doubled up. And, I've discontinued almost all extra Tylenol... and my side has stopped hurting a lot. Every once in a while it hurts, but it's more mild and doesn't last as long.

Hope this helps.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


4lanz
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/20/2008 1:55 AM (GMT -6)   
My duaghter has tried everything for sleep...many perscriptions. Finally, Flurazepam is really helping her.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/20/2008 8:30 AM (GMT -6)   
Last summer, I had severe acute insomnia and anxiety.

Trazadone alone did not work- even in a double dose.

It wasn't until I went to the ER that I was rx'd Trazadone and Ativan together for sleep.

Worked like a charm. I slept well that night and every night after. No side effects, either.

I was able to wean off easily.

Hope this helps.

LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/20/2008 8:48 AM (GMT -6)   
Thanks everyone for the responses--reading all of this makes me feel less alone in all of this.

Sounds like adding Ativan to the Trazadone may be worth a try.

And, KeepHope, this encourages me to get back to work on meditation, which due to flat out discouragement I've neglected for about a year now.

Kitty9309 may I ask how much and how often you took the Trazadone/Ativan?

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/20/2008 10:29 AM (GMT -6)   
I think I took 50 mg Trazadone and 1 low dose ( I think the lowest- I don't remember the strength) Ativan together once a day at bedtime. I took the combo for a couple of months and then first weaned off the Ativan and then the Trazadone a couple of months later.

Neither Xanax ot Trazadone alone worked. It was the combo that did it.

I hope you get some relief soon. We need the sleep to help us heal.

My former PCP who rx'd the Trazadone told me it wasn't working b/c I needed to relax! Duh, ya think?

Mind you, I was against these meds, but I was desperate. I am glad I got back on track using these.
 
Wanted to add that I am in Maryland, too.

Post Edited (kitty9309) : 11/20/2008 9:49:27 AM (GMT-7)


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 1:01 PM (GMT -6)   
I take Klonipin for PLMD aka twitches in my muscles while trying to sleep that wake me.

It works wonders at .5mg for me, BUT only if I take it on occasion and no more than 3 nights in a row.

LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/20/2008 1:44 PM (GMT -6)   
I got clearance from my LLMD to take up to 100mg Trazadone w/ Ativan (smallest dose, will have to look at the bottle) while I am on the Rifampin/zithro protocol.

Fingers crossed, wish me luck!

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/20/2008 2:07 PM (GMT -6)   
Good luck. Hopes for sweet dreams tonight!

Did your LLMD rx the Ativan?

LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/20/2008 2:10 PM (GMT -6)   
Yes, I already had it from this summer when I was going through an unbelievable herx, but that was before I started Rifampin/zithro (was on Minocin/Amox). Luckily I have plenty left over...

Thank you again!!
:)

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/20/2008 2:17 PM (GMT -6)   

You are welcome.

I asked if the LLMD rx'd it because I am thinking to ask for some in advance. In the past, when I was on abx for sinus infections, I had a couple of really bad "rxns" (herxes) from the abx. It was a nightmare and I felt like I had lost my mind. I start treatment on 12/3 once all my tests are in.


LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/20/2008 2:25 PM (GMT -6)   
Hope the tests bring more answers than questions! The only clear test result I've ever had was the Fry blood smear for Bart, my initial Lyme diagnosis was all symptom based (rashes and other symptoms) and thank goodness my doctor started treatment anyway.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/20/2008 2:42 PM (GMT -6)   
I am hoping for the same! My Bart smear is being sent to a vet lab in NC! (Also being duplicated in a local lab my Lyme doc is hoping to use if he gets correlation).
I actually had the bulls eye rash, but have always tested negative at the usual labs. Hoping for more through IgeneX.
Also had Babesia tests run. FISH at IgeneX.

My doctor is going to start treatment based on the rash and history. But I WANT a positive just for psychological reasons. :)

Did you have the typical stretch mark rash for Bart by any chance?

LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/20/2008 3:18 PM (GMT -6)   
Oh yes, classic Bart rashes on abdomen and down into my groin that I've had since about 1993. I thought these were stretch marks for years and years. Since I've had them for so long I think I was in denial that they really were Bart rashes until I got hit with another tick after I'd started treatment for Lyme, and soon after had new identical stretch mark like rashes popping up, that stopped spreading after I started Rifampin. Finally connected the dots. I also had some very pretty rashes that were probably Borrelia, but instead of a bulls-eye they were more like a rainbow, and slowly traveled up and down my abdomen. Also had a bulls-eye "rash" that was not red/raised bumps, but a deep purple and very painful bruising that spread out from a raised hive like lump in the center. I still haven't had positive tests for Borrelia or Babesia though I've had symptoms and am under treatment for both--only indefinite/unclear results. I'm a field biologist so I have a pretty scary history of tick bites--for about a decade the word on the street in my professional community was "if you don't get a bulls eye rash don't worry about it," and I'm afraid many in the field still follow that advice. Terrible--I had dozens of tick bites before I got sick in the late 90s. The rash I still have is apparently Babesia, my LLMD always looks at my hairline along my neck at the base of my skull--says that I have a rash there (that I cannot see or feel) which is clear Babesia. Haven't read about this anywhere but everytime I go in they check my hair and again say that it is Babesia.

I understand the psychological need for a test result--was stunned/freaked out/amazed/oddly relieved to see proof on the Fry lab test even after 2 years of treatment. I think I still have a lot of denial about all of this despite my long history with it--the test helped with that too. Am still glad my doctors didn't wait for a test result though.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/20/2008 9:44 PM (GMT -6)   
When you mention the rash at the base of your skull, it makes me think. Have you ever heard of a "stork bite"? It is a pinkish red birthmark like spot at the base of your neck at the hairline. These marks usually remain at the base of the neck after infancy. It is noticable when someone wears a ponytail.

I work in the lab and I understand all the testing pitfalls, yet I still NEED that positive result. My Lyme doc says I did have a positive test- the bulls eye rash on 1994! I have been so beaten down my the medical establishment, I doubt myself sometimes. Then I get mad and realize I do have Lyme.

My doc said he will treat w/o a positive based on rash, history and symptoms. He said that a few months or longer of minocycline or similar abx will invariably cause a positive WB later on.

Thanks, LymeinMD!

~Kitty
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