posted
I am having an allergic reaction to the Elavil/Librium combination that I take for sleep so am going to have to stop taking it. I take 100 mg. of Elavil and 40 mg. of Librium.
I need something potent to put me to sleep. What should I ask my LLMD for? If he doesn't give me something that works, I'm going to continue the other, hives or not! I went three night without sleeping and do not plan to do that again! I thought I was going to die.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
My son and I take Trazodone (100 mg) to sleep. It works pretty good for us.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I used Ambien for awhile but switched to Lunesta as it suposedly less habit forming and has no amnesia side effects. I've had good results with Lunesta. Keeps me asleep and other than the metalic aftertaste, seems to do the trick.
I haven't tried Ambien CR but heard it's pretty good. Talk to your LLMD about the allergy aspect,
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I am going to talk to my LLMD tomorrow. He is aware of the allergy. He is the one that took me off them. We started first by stopping the abx, but that didn't make any difference. Then stopped acidophilus, that didn't do anything either. It was when I stopped the Elavil/Librium that I stopped itching.
I have tried ambien; it only allowed me to sleep 3-4 hrs. a night. I require more sleep than that in order to function.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
I know that not getting sleep sets up a nasty cycle of not getting better as fast as you can. However I have found that when I get my antibiotic treatment right after the initial herx from hell the sleep comes.
I use my insomnia as a barometer of whether abxs are working and whether I am getting better.
I have used herbal remedies like chamomile tea, catnip tea, and sleepy time tea which seems to help.
When I had that horrible insomnia with the central nervous system buzzing though the only thing that helped me was antibiotic treatment.
I don't say this to be flippant and like I say I know that sleep is essential to getting well - also know that lyme and tbis completely screw up the sleep cycle...
Just mentioning it as a reminder to listen to the body for clues as to where you stand in treatment.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Insomnia has been a problem for me for at least 5 years. Even before I was first diagnosed with Fibromyalgia, we were trying to find something that would allow me to get restorative sleep. We finally found the amitrip/chlordiaz (Elavil/Librium) combo that worked - that was a different doc - a neuro. Even after the Lyme dx, my LLMD allowed me to continue after I showed him a list of the many other things I had tried - including natural remedies.
Now, after all this time (1 1/2 - 2 yrs) on the combo, I suddenly develop an allergy. My LLMD said that the Elavil will do that.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Well, I guess you just answered MY question about have you tried any natural remedies?!?!?! in your last post.
I have always been a night owl, but now that I am getting older, I have trouble getting to sleep and sleeping more than 4 hours a night. As a matter of fact it is important I don't sleep more than 4 or 5 hours at a time with my illeostomy and the gassing with the herbs I am taking.
So I average about 4 hours of sleep each night except for maybe one night a month, when I am so exhausted that I end up sleeping 7 to 9 hours. But then I feel more tired all day long for a day or two after that.
I tried over the counter sleeping pills years ago, but I did NOT like the groggy feeling I would have most of the day from them. So have chosen not to take any.
Sitting in front of this computer late at night, puts me to sleep a lot. But very uncomfortable IF I sleep more than an hour. AND IF I do, then it is hard for me to get back to sleep once I go to bed. Watching TV late at night also puts me to sleep. Good IF I am in my recliner.
Since I have gotten my vision back from the Devils Claw, I do notice that IF I am up too late doing those things my eyes are hard to focus though, and have to quit and go to bed.
COurse I am retired now, so don't have to get up early MOST days.
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So sorry you are having these sleep issues...it is no fun.
One other thing you may want to try but I think you should probably do it under a physician's care is magnesium supplements.
A lot of people find if they take magnesium before going to bed it helps them relax. Some think lyme really depletes the body of magnesium...
Just another thought...I hope you get in a good sleep pattern soon. Take care....
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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bettyg
Unregistered
posted
Gramma,
2 things struck me as I read your post.
restorative sleep -- have you had a SLEEP STUDY done to see if you have SLEEP APNEA, where you stop breathing when sleeping?
I never would have but on a different lyme board, it was suggested so I had procedure done. Yes, I have apnea & restless leg syndrome.
I now have a CPAP breathing machine, but it doesn't help me get any restorative sleep plus my nose plugs up every night & cpap can't help me on it.
Even had the humidifier but it blew cold air into my face all night long vs. the WARM air. They used thermometer testing water...it was 82 but felt 32!
2nd thing:
I just started taking ambion 10mg; highest they can give you again last month. I'm finally getting some sleep, but it's in the wee early morning hours: 6 am - 1 pm!
Also up peeing constantly which I've done for 35 years so it's hard to get RESTORATIVE sleep!
I've gone 3 hrs. max without getting up...halleluah! Each of us is so different.
I'm not a dr.; just undiagnosed for 34 yrs. until 04!
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
quote:Originally posted by bettyg: Also up peeing constantly which I've done for 35 years so it's hard to get RESTORATIVE sleep!
Betty, the peeing all night can be corrected with artifical anti-diuretic hormone. It is called DDAVP, and come in a nasal spray. It will also help if you tend to be dehydrated. Check with your doctor.
posted
I've had sleep/getting to sleep problems for over a year now.
What has helped is:
Light therapy = suntanning on the sunny days...careful..not too much at once. A sunlight lamp and short stints in a UV tanning bed during the winter. FAR infrared as well.
Melatonin (3mg) and Valerian root (2500 mg) before bedtime. Also GABA.
Zero light in the room I sleep in. Melatonin production is reduced even by the most insigificant light.
DHEA in the morning. If your DHEA is low (most lymies have screwed up hormone production) your melatonin will be low too.
A cd called "Peaceful Ocean", played on repeat all night.
An 20 minute Epsom Salt/Baking Soda bath just before bed.
Posts: 294 | From nevada | Registered: Sep 2005
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posted
Lunesta is the only thing that works for me.
I tried every non scrip thing I could includin EFT treatments and all sorts of different cd's. None of it had any effect.
Ambien did nothing and all those muscle relaxers didnt put me to sleep but did make me a non sleeping stupid zombie the next day.
I have resigned myself to 1 1/2 mg. of lunesta per night. I cut a 3 mg tablet in half. I hate to take a pill but after so many years of no sleep it was impossible to tell what was due to sleep depravation and what was due to lyme.
I need sleep to heal and this gives me at least 5 straight hrs. and I usually can get back to sleep and get a couple mor hrs if I breath deep slow.
Posts: 561 | From connecticut | Registered: May 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Sofy, do you get that metallic aftertaste from Lunesta. It stays with me throughout the day and is exacerbated when I drink water.
Maybe an Extended Release version is in the works?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Essential oils can help you break the sleep issue cycle.
One drop of jasmine oil under your nose at bedtime. Cup hands and inhale for 30-60 seconds.
If you need extra help, there are two others that you can add to the mix.
Valor Peace and Calming
Put a drop of Valor on your finger, run into bottom of each foot. Then cup hands by nose, and inhale 30-60 seconds.
Put a drop of Peace and Calming on your finger,run into bottom of each foot. Then cup hands by nose, and inhale 30-60 seconds.
Top it off with the Jasmine under your nose.
I slept like the dead from the very first night using this technique. A copay on an rx might be cheaper, but you don't get restorative sleep.
I'm not pitching anything - just telling you what helped me Nighty night!!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
hurtingramma: We need sleep so badly and when it's elusive life can be just miserable. I've had 3 sleep studies and every one indicated 0.0% restorative sleep. I feel your pain!
I too had a reaction to Elavil - I developed a slur which represented a really dangerous side effect (was taken off of it right away when I mentioned the speech problem).
Too bad though because for the first time in probably 20 years, I slept like a baby and felt like my "old self" during the day - even got my sense of humor back! Only other drawback with Elavil was unbelievable sugar cravings and weight gain.
I hadn't been taking anything for sleep until just last week - discontinued Trazedone a while back as I couldn't imagine being any more fatigued than I already was...
But last week I went to see my GP and he gave me some samples of (darn, where's the box...) what I believe is called Rezerem. He told me it's similar to Melatonin but 10x stronger. After two nights in a row of only 3 hours of sleep I was sleeping for 8, 9, even 10 hours.
The only thing was that I still felt kind of sleepy during the day. It comes in an 8mg. tablet and is not scored but I think if I use a pill cutter to halve the dosage it may help - am picking up the Rx tomorrow to try this (ran out of samples and doc was out of office for a few days.
While waiting for the Rx. I've been taking 2mg. Klonopin and .25mg. Xanax. My doc said that Xanax is sometimes better than Ambien and even Restoril because it has a slightly longer half-life (I'd always previously considered it an anti-anxiety med and not a sleep aid). I'm not sleeping as long or as well now, but oddly, I feel more alert during the day than when I was on the Rezerem (please check the spelling - where is that darn box!).
So, just an idea. It may help. Wishing you long, restorative z's.
Thanks for the other posts everyone. Some good ideas I'm going to follow up on.
Lymebites
Posts: 63 | From Deer Grove, Illinois, United States | Registered: Jan 2005
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posted
LUNESTA AFTER TASTE I do get an after taste and because I cut the pill in half its even stronger but I dont notice it the next day. I dont fear it and would tolerate anything for sleep
I take one Spry lemon candy after the lunesta and it immediately masks the nasty taste. Spry candy is made with Xylitol and suppose to be good for killing bad stuff in our mouth and not feeding yest.
Posts: 561 | From connecticut | Registered: May 2004
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posted
Thanks everyone for your replies and suggestions. I am still waiting for a call back from my LLMD
I have not had a sleep study done - I figured it wouldn't tell me anything I didn't already know. I don't believe I have apnea. My hubby knows what that sounds like and he has listened to me before and says that I breath regularly. I wouldn't be surprised if he has it though, he's often waking himself with his snoring and gasping.
I took the Elavil/Librium last night and itched a little, but did not develop any new hives. Slept like a log for 9 hrs. I didn't even wake up to go to the bathroom, which is a rarity for me.
My mother-in-law swears by Emu Oil for many uses, so I tried some of that and it made me itch worse!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
At this point, I think my sleep situation is lightweight compared to yours. But it used to be the worst.
I take tons of magnesium citrate as Marnie suggested, ambien, melatonin, valerian sometimes.
Also, I just started taking 50mg provigil twice a day, once in the morning and once in the afternoon. It seems to have the nice side effect of balancing out sleep patterns, as long as you don't take the full-blast dose of 200mg/day that the manufacturer recommends. If you do try it, you will find yourself having vivid dreams for the first week. Don't worry, they'll calm down.
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posted
Lymied: I used to take massive doses of magnesium, not so much for sleep as for aches. Dr. C. made me stop all vitamins and supplements because of his belief that they "feed the lyme". I do know that they helped tremendously when I was treating myself for fibromyalgia with supplements. But, if you don't follow Dr. C's instructions, he doesn't want you for a patient. He consults with one of the Dr. B's in Boston.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Supplements I see Dr. D in Boston who says no vitamins but he says its ok for me to take the hi magnesium & calcium supplement I take for my osteopinia. I take over 1200 mgs magnesium per day and he didt say I couldnt.
When I first started the magnesium, several years ago, it took my pain away by 90%. Still works. I do have a high pain tolerance.
If my memory is any good it was the B vit, E and antioxidents to be especially careful of.
Posts: 561 | From connecticut | Registered: May 2004
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bettyg
Unregistered
posted
Riversinger,
Thanks for your suggestion ahout the artification antiduratic hormone, DDAVP; I'll check with my dr. about that.
I'm glad we all tell our experiences to help each other & give us other alternatives to try!
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
All good suggestions. Magnesium reversibly inhibits calcium/glutamate, and gaba (sleep) and glutamate (excitatory) are at opposite ends. So, lots of magnesium IM or IV if necessary.
Potassium helps.
Lavender essential oil helps (google "nature's gift" for the best ones imo)
And sleeping pills. Everyone seems individual. I have a friend (without lyme) who sleeps great on xanax and needs in contrast about 5 ambiens to get sleep on that. We're all individual. Valium, xanax, klonipin, temezapem, are all options.
Posts: 2276 | From united states | Registered: Jun 2004
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Nighty night!!
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