richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Pain was so bad last night, I could not sleep. I don't know what to do.
I need sleep but more and more...pain is interfering. I am afraid presription pain meds or sleeping pills will interfere with treatment.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Sleep is a must! You'll feel worse sleep deprived. My LLMD gave me Xanax to help me fall asleep. I use one to go to be and one if I wake up and can't go back to sleep. It wears off pretty quickly and does not leave you groggy. Also, Tramadol for pain. I only take the Tramadol when I need it. It also works great. I don't think either of these will interrupt your treatment. I am also on Ceftin/Zithro/Mepron right now. Steroids are a must to avoid.
Posts: 2 | From new york | Registered: Sep 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
You won't get well without adequate sleep, so talk to your LLMD about this issue, please.
Prescription sleep meds should not interfere with your TBD treatment, many of us have had to resort to them.
I used Ambien for quite some time, then switched to Trazadone (which worked wonderfully). I no longer need them, but am grateful that they were available when I did.
Once you make some progress, you can stop taking the sleep meds.
So sorry about your high pain level and lack of sleep!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I agree, you need to talk with your LLMD. My LLMD said I would not heal if I did not sleep. I didn't want to take sleep meds, but I wanted to get well.
The combination that ended up working for me was Lunesta AND Lyrica. Ambien would get me to sleep, but it would only last 4 hours. For a while, I took half an Ambien to go to sleep, then four hours later took the other half. It worked, but I was tired during the day .... hard to tell whether it was Ambien or Lyme making me tired.
When I got better, I took six months to wean off the sleep meds slowly.
5HTP is a good one you might try before you try meds. Also valerian root .... I took both together, but still needed the meds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
How does Lunesta AND Lyrica help with sleep???? Pain meds???
I fall asleep fine...but wake up a lot to use the bathroom and also wake up from pain.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Richedie, I've found reading very helpful. It helps me focus on something besides my pain. Helps with any anxiety from that day.
Reading makes me mind sleepy. ZZZZZZZZZZZZ
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I read a lot but I can barely read at times due to pain. Playing guitar helps but yesterday it hurt so bad I had to stop. Reading doesn't help me.
I wish I knew why the pain has continued to get worse and worse for months and months. No longer any waxing and waning, just increasing pain.
I take Unisom....but does little.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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If the pain is that bad, you need to go to a pain Dr. You need some relief. My brother had to take methadone for a while to get relief, but YOU HAVE TO DO WHAT YOU HAVE TO DO!!!
After my knee operation I had unusual pain and swelling. I was on painkillers for months. (never did anything but kill pain for me. I did not get sleepy or high).
Finally the physical therapist and the orthopedist had me try a topical that works in, like, 40% of humans: Ketamine gel.
It's a large animal anesthesia that you apply topically (you use a latex glove). It worked really well, better than the percocet. It would last a couple of hours. You might look into it.
But whatever, if you don't get to a good pain Dr, your pain is not going to go away.
Good luck
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
Lunesta is a sleeping pill, but wouldn't keep me asleep. My doctor told me that Lyrica helps with the deeper phases of sleep. Plus, I have/had fibro, so it was easy enough to get the prescription approved. It did help with the pain.
So, the Lunesta would put me to sleep, the Lyrica would keep me sleeping and help me get deeper, healing sleep.
Here's a talk he gave and part of it is on sleep. Don't let the fact that it's an autism conference keep you from watching it .... he talks all about Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
James, Where to get Ketamine gel? Randibear mentioned cineol lotion.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
My husband resisted sleep meds for a while but finally gave in. We had to try a bunch before finding one that worked. Lunesta has been great so far.
Six - we will look into lyrica as well...sounds like it might be even better to combine it with lunesta. Is Lyrica an RX? Also - thank you so much for the video post...very informative!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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WildCondor
Unregistered
posted
Why would Rx meds interfere with treatment? Sleep meds are necessary as a supplemental treatment to your antibiotics. Then again, since you are probably not on the right doses of antibiotics, it could be from the disease itself.
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Ketamine I believe is prescription only. I guess veterinarians carry it too.
It's also know as a date rape drug, so it's probably controlled.
Posts: 872 | From New York City | Registered: Jun 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Ketamine? I'll ask my doc. Thanks.
WildCondo, what gives you the idea I am not on the right dose?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I agree with some of the ideas here...mainly that you must sleep to get better. My docs all stress that.
After many many nights awake and many trial of this and that I wound up with Seroquel 50mg sustained release and Restoril 30 mg...this one gets me to sleep.
I had ketamine in IV's years ago. It helped with pain, but it is really strong stuff.
My current pain regimen is working well. PM me if you want me to send it to you.
Good luck and good sleeping!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I came down sick in Oct 2001 and was not sleeping.
I noticed that it seemed to be taking a combo of things for others to get some sleep.
And that what worked for one person would not work for another.
It was not until the first of this year I think, that I finally started getting some sleep.
I take generic restoril, gabapentin, and glycerine (sp?) in order to sleep at night.
What a relief.
Good luck finding what works for you.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
PS It is still very rare that I am able to just climb in bed and go to sleep like I did before lyme and company.
The ringing in the ears is an obstacle.
So, I lay on the couch and hope I turn off the TV before I fall asleep.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Richiedie, only your doctor can tell you what dosage of medication is best for you. Everyone is different. We all have completely different medical situations.
I also have sleep issues. I take Ambien and Xanax. Most nights I get 5 of 6 hours of straight sleep and then I doze for a few more hours. Some nights, it just doesn't work. I have tried many different sleep aids and this has been the best combo for me so far.
But like I said above, we are all different! I think you just have to try different things until you find that one thing that works best for you.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I started taking Lyrica a few months ago and it has really helped with sleep! Sometimes I need to add a small dose of diazepam, but in general, insomnia is one symptom I've been able to scratch off my list.
It did take some extra work for my insurance co. to approve the Lyrica prescription.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I know Dr. B says you can't fall behind in sleep. What does he mean? Never? I mean, I get about 8 hours a night which I think is good......but about one night a week I'll have a bad night and only get 6 hours. Is that OK???
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Sleep disruption is very common with LD. My problem was not going to sleep but staying asleep, i.e. fractionated sleep. I would wake up 3-4 times per night.
Like you, I would wake up during the night to go to the bathroom. I think part of the nighttime urination problem is the body's need to get rid of excess toxins from LD.
I have tried all the new sleeping medications, like Ambien, Lunesta, Rozerem, etc., but they either did not work or made things worse. Rozerem was particularly bad. I took it for 2 days and had horrible, slasher-movie nightmares (which I have never had before or since), so I stopped it but then was awake for 2 days!
The doctors had me try some antidepressants. The older antidepressants, like Trazadone, did not help.
The newer SSRIs, like Paxil, worked great for the first 2 weeks, but then the fractionated sleep would come back. I thought that was interesting because the SSRIs supposedly reduce seritonin uptake for the first 2 weeks while they "stockpile it", and then the seritonin is released at an increased rate, which would coincide with my worsening of sleep!
Eventually, I ended up taking Restoril (30 mg) when I would wake up and be wide awake about 3-4 AM. It would help me get back to sleep within about 30 minutes, and I would then sleep for another 3-4 hours. Getting this extra rest has made a tremendous difference in my ability to focus and concentrate.
If pain is also part of your sleeping problem, I would try some muscle relaxers, such as Flexeril (which can also help with sleep) or Skelaxin. Personally, I prefer Skelaxin because it seems to work better for me and has less side-effects.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I am ****ed because I was planning on working out today. Now I just want to get lots of sleep and start new tomorrow. I will ask my doc about Restoril. Right now I am doing natural like melatonin, chamomile and valerian.
Are those muscle relaxers all prescription?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Yes, they are both prescription. I would try flexeril first because it can also help with sleep and there is a generic version that is really inexpensive, about $3 for a month's supply with my insurance drug card.
Skelaxin cost me about $50 for 120 tablets, but I do not take the prescribed dosage of 4 pills per day. I usually just take 1 in the evening so the script lasts me 4 months.
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I had sleeping problems for about 10 years of my life.
In the last month I had a dietitian treat my arenals (adrenal support + adrenal stimulant and calming creams)
I'm happy to say that my cortisol and adrenals are starting to function properly again.
I now go to bed at 12:30am and wake up at 930am.
My old schedule was 5am - 2pm (boy I don't miss those crappy nocturnal days)
Address your thyroid and adrenal systems people. Don't get caught up in ambien and 5HTP, etc. Just my opinion.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Make sure you really investigate the possible adverse effects of any prescription drug. Sometimes, you can end up getting prescribed even MORE of them to handle the consequences of one.
This can get very, very dangerous. Also, can cause permanent damage to other areas, like heart, brain, etc.
If you can use more nutritional approaches, like brewer's yeast for better sleep, etc., this would be less problematic.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Tylenol nighttime (has an antihistamine) is over the counter and that is what works for me. I take it about every third night. Prior to Lyme, I slept like a baby every night....but the neuro stuff keeps me lying awake most nights now.
I am not a doctor....be sure to ask your MD since even OTC meds can be dangerous, or react with meds you are already on.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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