posted
If restorative sleep is necessary for healing, I feel like I'm never going to get better.
I've been sick for 6 years, and about three years into it, I started waking up somewhere between 1-3 a.m. most days. My LLMD ordered a sleep test, the result of which was that I had "sleep disturbance."
Because my LLMD felt sleep was so critical, I was put first on soma, and then ambien was added when that stopped being sufficient.
About a year ago, that stopped being effective. For the past six months, the problem has grown increasingly worse. Several days a week I'm up around 3 a.m. for good. I work, so this is a big problem.
I often sleep away half the weekend, I'm so exhausted by the end of the week.
I practice good sleep hygiene, and slept perfectly my whole life before I became ill.
The most recent things I've tried are melatonin and guided imagery. No help.
I'm really getting desperate. I can't remember phone extensions I've been calling for years at work, and I just have trouble processing generally. And obviously, I'm exhausted all the time.
It's Saturday, and I've been up since 3:15 (went to bed at 10). My longest night's sleep in months was 7 hours.
(As background, I did orals and rocephin for 2.5 years, had no progress (got worse), switched to alternative for 1.5 years, and am now back with an LLMD. It would take a very long post to list everying I've done lyme- or coinfection-wise so far.)
Help?
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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clairenotes
Frequent Contributor (1K+ posts)
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posted
My pattern is very similar. I take htp, theonine and magnesium. Essential oils have also been very helpful of late. I have found them to have a very soothing, sedating effect when rubbed into my scalp. Search 'essential oils' here for the discussion, which has a lot of information. Does not talk about sleep specifically, but it is a side-effect.
Things are still not perfect, but much improved. I am only awake for perhaps 1 or 2 hours as opposed to several hours. Even then, I am a lot more drowsy rather than wide awake during that time period and the sleep I do get is more restful.
Melatonin helps me sometimes, and GABA, too. I find that htp and GABA work well for 'over-thinking.' GABA is a little stronger than htp for this. Might experiment, but start with low doses (less than the suggestions on the bottle).
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Although i have not had this problem as long as you, i am experiencing almost exactly the same problem and I also work which can make things difficult sometimes. It seems like almost everyday for the past month or so I wake up around 2-3AM and can hardly fall back to sleep. I actually find myself waking up in a panic with my heart racing.
Claire-those sound like good ideas and I am going to look into them. Do you know if any of those have interactions with any abx?
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
David,
The supplements listed (htp, theonine, GABA, melatonin, and magnesium) should not interfere with abx, as they are supplements, basically. But it never hurts to run them by your LLMD.
I do remember that the person that sells the essential oil, however, did have some instructions if taking abx, but I don't think they were contra-indications. This has had the strongest impact on my sleep of late, so I think it is still worth investigating. It has a very calming effect, which may help you with the panic you experience when waking. See www.yinessentials.com for Farah's story and the product is called lymesennce. Again, sleepiness is not the main action, it is a side-effect, somehow.
A quality magnesium product is important too. I like one called Mapurit that somehow combines vitamin E and seems fairly potent, which for me means, very soothing. Magnesium seems to be depleted more in this illness, too.
Hope this helps.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi monkeyshines,
I have had the same problem, I need sleep! At one time, once I was asleep I would stay that way, but lately I have been waking up in the middle of the night also.
So far I have had to take Elavil and Melatonin with lots of sleepytime time tea before bed to fall asleep. On the really bad nights I added in Ambien. I hate to take all the pills though, so hopefully I will find something else that works.
I found when I treated Babesia my insomnia got much worse,(herx wise) I wonder if there is a connection between the co-infections and insomnia? My son also has insomnia, he is on Malarone, and Zithromax.
Thank you for posting the info clairenotes, I think I may try the oils.
Posts: 6639 | From Michigan | Registered: Jun 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I had the same problem. Due to other more pressing issues sleep was one of the last things addressed by my doctor.
I've been on Ambien, melatonin, etc., but got to the point it only lasted four hours. I've tried several other things and still didn't get enough sleep.
I now take a combo that address sleep, pain, restless legs, and muscle tension. I use gabapentin, trazodone, clonazepam, cyclobenzaprine and tramadol at night.
Yes, it's a lot, but I am now able to sleep through the night and wake up feeling like I slept. Until my symptoms improve enough to reduce this combo, I'm sticking with what works.
It took me years to get to this point. I won't change it until I know I can sleep on my own.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I also take theanine and 5 htp and also the prescription ativan.5 mg.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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bettyg
Unregistered
posted
i haven't slept in 30+ years!
sleep study showed i have sleep apnea and showed what i wantd confirmation of ...i do NOT reach level 4 where you get refreshed sleep and body rejuvenates from injuries; both overnights showed no level 4!
i've tried everythign out there. llmd would not listen to me, and prescribed 5 bottles of sleep related supplements; what a waste of money that do not work and just sit on my shelf.
i worked until 8 yrs. ago, so it was very difficult for me too working fulltime. good luck to you.
did you see your sleep study results; look about level 4 sleep; perhaps it will show what mine did!?
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posted
Definetly try melatonin, BUT, I would only recommend using the slow/sustained-release. Take between 1-20mg of it a night. You can actually take even more, it's a super safe chemical and actually extremely beneficial to your health (for lyme too, it inhibits NF-kB, and is a powerful immuno-stimulant). Get a '6 or more hour' release formula. Source naturals and Jarrow both make a sustained-release (you can find them in i-herb or vitacost, just don't use the vitacost slow release brand, its bogus imho).
NOTE - Regular melatonin only has a 20 minute half-life. I find if I take the regular release, if I even manage to fall asleep, an hour later I'm wide awake and have insomnia. Regular and slow/sustained-release are NOT the same, so if you've only tried the regular release, don't think that the slow-release can't help you.
I've heard good things about Gaba (although you may have to take up to 2 grams), and some people recommend kava. Valerian root extract, L-Theanine, Phenibut (one of the best, but you can build a tolerance). Those are my arsenal.
5-HTP helps some people, BUT, if you use it, DON'T eat it orally!!! Most of the 5htp will be taken up by the stomach (especially if you take b6 with it) and the rest of the periphery. Get a sublingual 5-htp, or just find some pure powder.
To do 5htp sublingually, put the said amount of powder (~25-100mg) under your tongue, and swish it around a little bit every so often. Keep it in for like 10+ minutes, then spit it out. Taking it with xylitol may help too.
That may sound weird to some people, but I've done my research on it, and that's just the way it is. If anyone would like to see the proof/research of anything I say, all they have to do is ask, and I will present it.
Phenibut is bad-*ss. The only place I know of for getting phenibut powder, is at 1fast400. http://www.1fast400.com/p1497_Phenibut_Powder_1Fast400.html L-theanine can help, you need 100-400mg a day/night. Brands that use suntheanine are the best (cheapest suntheanine brand is from vitacost afaik)
If anybody buys that phenibut from them, I'd recommend NOT buying ANY other of their powders or products that are made by them, the quality is beyond questionable for some of them. The only reason id recommend them for phenibut is because they are the only place I know that currently sells it.
Other then those hints, you can maybe try not being exposed to much light for a while before you sleep. Wake up to bright light, or if you use an alternate sleep/time/wake cycle, tack dark coloured sheets over your blinds so that no light gets in while your sleeping. You can also try doing exercises, stretching, and massaging yourself before sleep.
Oh, I almost forgot! Earplugs!!! I can't even sleep right at all without earplugs anymore, I wear them every night, and a lot during the daytime. They might take some getting used to, try different brands, I forget mine are even in sometimes.
Hope any of those suggestions can help you, good luck getting some ZzzZ's!
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
Oh, forgot to say. bettg - that stinks you don't get level 4 sleep. I have narcolepsy and don't get refreshing sleep myself, I know how it is. I think Lyme Disease could even cause narcolepsy, based on my own research.
They think narcolepsy is caused by damage to the orexin neurons in the hypothalamus. The orexin system is responsible for releasing 'orexins' aka 'hypocretins', which regulate sleep and appetite.
Based on my research, which I'll paste a couple examples of below, for anyone interested, I think Lyme Disease could cause Narcolepsy , or at least a similar disturbance.
" In patients with encephalopathy, serum QUIN was elevated with corresponding increments in CSF QUIN. Lymphokine concentrations were not consistently elevated. We conclude that CSF QUIN is significantly elevated in B burgdorferi infection--dramatically in patients with CNS inflammation, less in encephalopathy. The presence of this known agonist of NMDA synaptic function--a receptor involved in learning, memory, and synaptic plasticity--may contribute to the neurologic and cognitive deficits seen in many Lyme disease patients."
from the other study:
"In addition, quinolinic acid-induced decrease of orexin neurons was prevented by an inhibitor of poly(ADP-ribose) polymerases. These results provide the first evidence concerning cytotoxic consequences onto orexin neurons, and indicate that NMDA receptor-mediated injury may contribute to the selective loss of these neurons in the hypothalamus, a prominent neuropathological feature found in narcolepsy patients."
There you have it. Imho, the requirements and definiton of narcolepsy is half-BS anyway. I think this man explains it well; Site On Narcolepsy.
"Ever since DNA was discovered, one must conclude that every person is different from every other person, which merely corroborated my opinion of 7 years of age 80 years ago.
This means that all standardized treatment will fail certain persons, and therefore is wrong.
Therefore all standardized treatment means that the standardized treatments will end up being standardized errors in treatment. I am indebted for this statement to my personal doctor. As of today.
Then we will eventually get guidelines for standard treatment for placebo controlled randomized standard errors." -Dr. Errol B Cahoon M.D., D.Psych.,F.R.C.P.C
Anyway, the problem is that I don't even know of any drugs besides xyrem (GHB), that will actually help you get the proper deep sleep phases. Of course, that drug is highly controlled, and only people with narcolepsy and apparently, maybe lyme disease, can get it. They will make it a b*tch to get though, and it's extremely expensive.
I will probably post this in the main forum under it's own title, or something along the lines of what I said, as I've been meaning to share it for a while.
If anybody thinks what I just said actually makes sense, please say so! heh. Oh, and bettyg, what was your sleep onset time like?
Oh, one more thing... Now I think you can see why I'm so gung-ho about taking neuroprotective supplements/drugs, and advocate them for people with LD !!!
Oh, another thing! hehe. While on the subject of sleep and sleep inducing supplements...I'm not so sure if you'd want to be taking supplemental L-Tryptophan for sleep. Quinolinic acid (QUIN) is made from it.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
I knock out with 25 mg benadryl and 1/2 tab ativan.
There is a website about a medication called naltrexone. People are taking it in low dose and reporting sleeping throught the night. www.ldninfo.com. I called Dr. Bihari, who works with it, and he said there are people with Lyme taking it
There is an active chatsite on it, [email protected]. Most people are using it for ms, but there are also other users who don't have ms who are benefitting.
Posts: 13117 | From San Francisco | Registered: May 2006
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Ask you Doc to Evaluate you for Xyrem usage. It worked like magic for me and I had (at the time)insomnia that 3mg Klonipin +20mg+ ambien +8mg of Dliaudid coudn't defeat. Now here is the important part ...Xyrem is just GHB which any body builder in the 80's ate in low dose from the natural food store for it's pro Human growth hormone releasing effects until some idiots gave it +alchohol to some girls and they died.You can't take it if you have kidney diseae or extreme high BP dut to it's high salt load.
Now once you make a supplement illegal due to the above the FDA can let a phamaceutical company patent it and charge($500) per month for it. It is dispensed only from 1 centralised pharmacy and your DR. has to read a pamphlet and send in a special script form. It is then delivered only to your sign off.Once established the pharmacy is actually really cool.
Unfortunately for me it exacerbated my peripheral neuropathy so I had to stop.If you have any ? private message me, cause for severe refractory insomnia ..this stuff works. Also tell your DR. to not get freak out by the class 1 status for it's labeled use(narcolepsy with cataplexy), 'cause it's only class 3 for off label use(insomnia)
Good luck,
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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posted
Robin123, your link is wrong, the correct address is http://www.ldninfo.org/ . LDN sounds interesting, heres the wikipedia page on the subject.
Right on Travlr1...glad you got to try Xyrem, sucks you couldn't use it though . This chemical prohibition really p*ss*s me off. Makes me mad that some people can't even take Xyrem because of the high sodium content (Na-GHB). The manufacturer could easily make a Potassium (K-GHB) or Magnesium (Mg-GHB) salt instead. It's not a difficult/expensive chemical to manufacture or anything.
I mentioned earlier of the possible therapeutic benefits of high doses (>2g) of supplemental GABA.
A single oral dose of 5 g gamma aminobutyric acid (GABA) was given to 19 subjects and serial venous blood samples were obtained before and 3 h after drug administration.
A placebo was administered to 18 subjects who served as controls. GABA caused a significant elevation of plasma growth hormone levels (P less than 0.001), but did not consistently alter plasma prolactin concentration since only 5 out of 15 subjects showed an increase of the hormone.
Eight additional subjects were submitted to an insulin tolerance test before and after per os administration of 18 g GABA daily for 4 days.
Protracted GABA treatment significantly blunted the response of growth hormone and enhanced that of prolactin to insulin hypoglycaemia (P less than 0.01).
These results indicate that pharmacological doses of GABA affect growth hormone and prolactin secretion in man . The precise nature of GABA's effects as well as its mechanism of action remains to be clarified.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
What an enormous amount of great information and advice! Thanks, all. I'm going to take some time digesting it, and make an appointment with my LLMD to review.
With hopes for 8+ nightly hours soon,
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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I literally can't say enought about how effective the Xyrem was. I'm not pushing it as the only alternative, but here is the list that failed and Xyrem worked like magic: the 3 drugs listed in the first post +, Elavil,trazadone,ativan,Ambien,restoril(temazepam),Xanax,benedryl,and Lunesta(no effect and horrible taste in mouth).
For 2-3 months I initially had good luck with 2mg Klonopin(get the brand name on this one)+ 10mg of Ambien
I did not try the new Rozerem which works by making your brain more receptive to the effects of your own bodys melatonin(produced by the small Pineal gland in your brain). The reason being is that folks who have autoimmune components to thier form of the disease should avoid anything that makes endogenous(your own)more effective or extra outside sources of melatonin due to it's effect on the immune system. Could work well in your case.
I am not an md but these are my own experiences and opinions, but you might run it by your llmd 'cause you will not get better until you can get some good stage 4 sleep(restorative).
Take care,
Travlr1 Posts: 66 | From West Coast | Registered: Jul 2006
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posted
Thanks for another post on that Travlr1. Like I said, Xyrem is the only drug being prescribed, as far as I know, that actually makes you get the proper stages of sleep, and suppresses excess REM.
SSRI's and tricyclic anti-depressants _can_ do that eventually, but they have completely other effects that are often not desirable. Which is why they came out with Xyrem for narcoleptics.
I don't mean this post to in any way bash your suggestion Travlr1. But in my humble opinion, Rozerem is B$, don't waste your money on even filling a prescription for it. I've heard of _no one_ that currently takes it, simply because it doesn't work well.
My brother got a script of Rozerem, which he found useless as did I. Rozeram (aka Ramelteon) is just (MT is a type of melatonin receptor) an MT1 and MT2 receptor agonist, and doesn't have much an affinity for MT3.
There has been no proof presented that such a selectivity is actually useful at all (even though they make want you to think different from a marketing campaign/commercials). I tried Rozerem and it did the same thing -regular release- melatonin did, I fell asleep for an hour, and woke up with more energy and insomnia.
I seriously doubt Rozerem will help anybody that slow-release melatonin won't. Because, Rozerem only has a 2-hour half life, which is useless for a sleep drug/medication.
The only reason they even market and sell Rozerem _in my opinion_, is because they _can't_ market and sell melatonin! I don't see any reason to take a synthetic drug, when the natural one with proven safety and benefits, is cheaper, and has a comparable or superior efficiency.
I also am going to find out what equivalency a dose of Rozerem is in respect to melatonin (keeping the lack of MT3 affinity in mind). Note, there also have been no studies comparing Rozerem's efficiency to melatonin (as far as I'm aware).
Don't mind me if I sounded a little uh, direct/mad about the sleep drug situation. I'm just tired of getting non-refreshing sleep, and tired of the pharm companies marketing out crappy drugs and hoarding/overcharging effective ones because they have a 'potential for abuse'. Any drug that does something strongly against certain actions like this, will have a 'potential for abuse'. Because it's DOING something!!! lol
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I just wanted to add my expereince with Xyrem to what has already been posted here. My doc was really big on it a few years ago and was pretty insistent that I try it. I figured what do I have to lose, so I did.
That was my first mistake. I faithfully followed the instructions and didn't notice any improvement. Actually I was having to get up in the middle of the night to take the second dose and my sleep wasn't as good as it had been prior to Xyrem, with the meds I had been on.
After the first month I reported that to my doc and he told me to hang in there and increase the dosage and it would improve. He assured me everyone else in his practice was having great results. For me, still no great results!
That scenario continued for four months and I was really fed up with the stuff! Then I happened to read a post on a FM message board by someone who was on Xyrem.
She described what it had done for her. Not only had it improved her sleep, it had improved her other symptoms as well. I couldn't believe it. What she wrote and what I was experiencing were not even close!
I returned to my doctor armed with detailed notes and I ended up going off Xyrem. It had been like a nightmare for me, even kept me awake half the night before my SSDI hearing due to anxiety.
I was fine until I woke up to take second dose and that did it I couldn't go back to sleep and then was frantic with anxiety. I had not had any problems with anxiety for years at that point, so this was highly unusual.
So, while it works for many, it doesn't work for all, just like about everything else we try here!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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My MSH (melonocyte stimulating hormone) tested way low, which may explain it.
There's some kind of melatonin receptor-feedback mechanism that gets warped with a frustrated immune system.
Small doses of Ambien work for me, although I wake up feeling tired. It's better than laying awake half the night.
The worse case is waking up in the middle of the night, because then it's too late to take anything. When that happens, I have to resort to pain medication, because it wears off faster.
I seem to have lost the ability to sleep in, too. If I've taken Ambien too late, I stll wake up at 7 or 8 o'clock, but with a sleepy headache that lasts half the day.
I'm sorry--I have no suggestions, just commiseration.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
My sleep regimen has been working for me for over a year.
After being so sleep deprived that I hallucinated I went to a psychiatrist who prescribed Seroquel for sleep. I added that to my hydroxyzine, flexerel (cyclobenzapine) and neurontin.
I now sleep through the night and nap during the day.
I recently had a sleep study which found I did have sleep apnea which was waking me from the restful sleep I need...so....
I am getting a BiPap machine (like a C-Pap but the air doesn't continue to blow into your nose constantly....it quits so you can exhale better.
My doctor told me that getting 18 hours of sleep per day is a GOOD thing, especially when immune compromised. He also said that restorative sleep is the one thing that can help the body to fight its own fight.
Hope this helps someone, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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can let a phamaceutical company patent it and charge($500) per month for it. It is dispensed only from 1 centralised pharmacy and your DR. has to read a pamphlet and send in a special script form. It is then delivered only to your sign off.Once established the pharmacy is actually really cool. ![[Smile]](smile.gif)
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Don't mind me if I sounded a little uh, direct/mad about the sleep drug situation. I'm just tired of getting non-refreshing sleep, and tired of the pharm companies marketing out crappy drugs and hoarding/overcharging effective ones because they have a 'potential for abuse'. Any drug that does something strongly against certain actions like this, will have a 'potential for abuse'. Because it's DOING something!!! lol![[shake]](graemlins/shake.gif)
I faithfully followed the instructions and didn't notice any improvement. Actually I was having to get up in the middle of the night to take the second dose and my sleep wasn't as good as it had been prior to Xyrem, with the meds I had been on. ![[bonk]](graemlins/bonk.gif)
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