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Posted 9/6/2017 5:32 AM (GMT 0)
Like many others on this forum, my sleep is pretty terrible. Lately, it's been even worse. Today, I visited my LLMD and she is (again) suggesting some pharmaceuticals to try and help me get some deep, restorative sleep.

I know that I need sleep, if I ever hope to make progress toward healing.1 So, I'm considering some medications. However, I have a lot of skepticism and fear -- which may or may not be rational. So, I welcome others to share any experience or advice.

As for my sleep history, the last time I recall my sleep being great was 1997. In 2003, I noticed I wasn't feeling as refreshed upon waking. I had sleep studies in 2008 and 2016 and both showed "Moderate" Sleep Apnea. I did nothing about it in 2008. In 2016, I tried a CPAP machine, but never found a mask that worked for me and quit in frustration.

I'm open to trying the CPAP again, but I question whether or not I have really have Sleep Apnea. For anyone who has ever had a sleep study, you know how anti-sleep that environment can be. It's almost as if they make it that way on purpose, so everyone will have a bad sleep study and then need treatment. That's probably not what's happening, but it sure seems like it.

Anyway, following are a list of the medications (and dosages) that my LLMD is suggesting. They're in no particular order and are not necessarily intended to be prescribed/taken together. She believes in trying one medication at a time, starting really low, increasing slow, and taking the minimum effective dose for only as long as helpful.

Marinol (I dropped-off the prescription at the pharmacy and don't recall the dose.)
/www.drugs.com/marinol.html

Trazodone (50 mg)
/www.drugs.com/trazodone.html

Seroquel (25 mg)
/www.drugs.com/seroquel.html

Remeron (15 mg)
/www.drugs.com/remeron.html

Neurontin (100 mg)
/www.drugs.com/neurontin.html

Lyrica (25 mg)
/www.drugs.com/lyrica.html

Gabitril (2-8 mg)
/www.drugs.com/mtm/gabitril.html

Trileptal (150 mg)
/www.drugs.com/trileptal.html

Some are Anti-Psychotic, Anti-Depressant, and Anti-Epileptic/Anti-Convulsant. Some of them have serious potential side effects. That's what primarily has me worried.

She also had an extra bottle of the following and gave it to me for free to try:

Hemp Oil (11 mg hemp extract per 1 mL serving)
/www.cwhemp.com/cannabinoid-hemp-oil-cbd-supplement-everyday

All comments, advice, and experience are welcome and appreciated.

__________________________________________________
1 Of course, I also need to start treating, if I hope to accomplish anything. As noted in my previous post Antibiotics: Why or Why Not?, I've not done much, due to the skepticism and fear I mentioned at the opening of this thread.
Posted 9/6/2017 5:41 AM (GMT 0)
Have you tried any of the non rx options like Valerian root and Somno pro? I take both of those 1 hour before I want to be asleep and they help.

I'd also do either the ZRT spit test or the Dutch labs urine test to see where your cortisol levels are. Your sleep may be messed up from hormone or adrenal imbalance. I'd rule those out before taking the level of rx your dr is giving you.
Posted 9/6/2017 6:07 AM (GMT 0)
As far as pharmaceuticals go - I would not take the Seroquel. Stay away from the antipsychotics.

Try other options first.


I would try the hemp oil first....(in that list)

I'm also wondering what jrpsf mentioned: Have you tried others - Valerian, melatonin, etc.

Many people try melatonin but don't take enough.
Posted 9/6/2017 6:38 AM (GMT 0)
Thanks for the feedback, jrpsf and my favorite Girlie.

According to my DUTCH Advanced Adrenal Assessment, my "24hr Free Cortisol" is high. The high reference range limit is 250 and mine was 403.

Here's the lab: bit.ly/2vKgAwH

I've not taken Melatonin in years. As for Valerian, I've not taken it on its own. However, Valerian is one of the ingredients in the Deep Sleep supplement I take at bedtime, along with 3.5 mg of Naltrexone.

I just remembered I have a bottle of Liposomal Zen in my refrigerator. I tried a few pumps during the day and it seemed to make me groggy, so I stopped it. I need to ask my LLMD if it's safe to take with Naltrexone and/or the Deep Sleep product. I have so many supplements and a few of them I've either never tried or maybe tried a few times.

Because I wrote a few versions of this post, I failed to mention that I fall asleep without any problem. I'm asleep in 30-60 seconds. Recently, though, I wake-up after 60-90 minutes and I go in-and-out of sleep for a while. At some point, I get back to sleep, but then my alarm clock goes off and I have to get up for work. Even when I sleep late on the weekends, though, I still wake-up tired. On the weekends, I'm in bed from 9 to 12 hours.
Posted 9/6/2017 6:50 AM (GMT 0)
I had a 24 hour urine cortisol test done - in 2013 - when my regular Dr. was trying her best to sleuth out what the heck was wrong with me. And it was high.
Then of I saw an endocrinologist and he had me do the dexamethasone suppression test. (to check for Cushing's disease)
So I took a low dose of dexamethasone in the evening (1 mg) and then the next morning my cortisol was tested. It was in range.
If you have Cushings syndrome, it usually stays high after taking the dexamethasone.

We did another 24 hour urine cortisol test about 4 months later and I was in range.

High cortisol can be due to physical or psychological stress.

My sleep is okay ish. I fall asleep pretty good, too...but will wake up fairly early in the morning...so only get about 6-7 hours of sleep. I used to sleep for 8-9 hours.

How is the Naltrexone working? Did you notice improvements with it?
Posted 9/6/2017 7:11 AM (GMT 0)
Thanks for telling me about the Dexamethasone Suppression Test. I'd never heard of Dexamethasone or the Suppression Test. I have a friend that likely has Cushing's Syndrome.

As for Naltrexone, while not a sleep medication, I got benefit from my very first dose of 0.5 mg. With that tiny dose, I stayed asleep through the night. That was probably over a year ago.

Each week, I would increase the dose of Naltrexone by another 0.5 mg, until I settled at 3.5 mg per night. Taking more seemed to cause my sleep problems to return.

Prior to starting Naltrexone, it would take several hours for me to wake during the night. It was only in the last month or two that I started waking after 60-90 minutes.

I've gone far too long doing little-to-nothing to try helping move me forward. Now, I'm paying the price, as more things continue to falter and cause me problems.
Posted 9/6/2017 7:39 AM (GMT 0)
Of the ones I'm familiar with I would suggest the trazodone. I agree with girlie on the seroquel. I'm unfamiliar with neurotin (gabapentin) being used for sleep. As far as I know that is usually prescribed for neuropathic pain, but it could be an off-label I'm not familiar with.

For the sleep apnea I think an alternative to cpap has been developed I can't remember what it's called but you could try looking it up. If I remember correctly it was made because the cpap machine is so uncomfortable to wear.

I've taken valerian in the past with no effects but that doesn't mean you'll be the same. My sleep professor in college said melatonin supplements are only good for jet lag (and she was fairly open to herbals). That being said I know people who swear by melatonin.

I don't know anything about the other meds on the list.
Posted 9/6/2017 7:58 AM (GMT 0)
wow, that is a huge list of sleep meds. this is what i do

- i do not drink coffee after noon time
- i drink generally green/black tea

at night i take
- one large omega3 pill (2grams)
- 3mg melatonin
- hawthorn tincture 30 drops

these generally make me sleep 6-7hrs.

if i do not sleep well for a day or two, then i take
- one large omega3 pill (2grams)
- 3mg melatonin
- hawthorn tincture 30 drops
- bromazepam 1.5mg (half pill)

In the past when i was in a lot of pain, i also used a sauna close to bed time, that also made me sleepy.

this always works. i usually don't require more than half a pill of bromazepam per week, usually im ok with just the rest of the meds on a nighly basis. but yes, i do not let myself with more than 2 nights of bad sleep ( <4hrs) in a row. Sleep is important both for lowering inflammation and for immune system function, so as i said earlier, do whatever it takes to sleep. if that involves taking prescription pills , then do it.

Being afraid of these drugs is silly, if you get a guy that is addicted to benzos and u tell him you have a chronic infection of the BRAIN with multiple secondary infections, and that there is no current treatment that heals you, and you are in pain almost daily, he will s...t in his pants, i tell you. your condition (chronic lyme) is way much worse than anything that can happen to you if you take some sleeping pills. as long as you take them in a responsible manner and try never to take more than what you aim to (like i said i never take more than half pill), then what is the problem ?

Post Edited (mpost) : 9/6/2017 2:03:46 AM (GMT-6)

Posted 9/6/2017 8:41 AM (GMT 0)
To test if I had sleep apnea - I did it at home - and I was moderate too.
I even had some central sleep apnea events.

CPAp didn't help me...but I seem to have improved with treatment and time.
I am thinking of doing another test to see what it shows.

There is a mouth piece you can have made for sleep apnea.
I think it brings your jaw forward - not sure if that's s good thing though- wonder what that would do to your jaw long term.
Posted 9/6/2017 11:00 AM (GMT 0)

mpost said...
wow, that is a huge list of sleep meds. this is what i do

- i do not drink coffee after noon time
- i drink generally green/black tea

at night i take
- one large omega3 pill (2grams)
- 3mg melatonin
- hawthorn tincture 30 drops

these generally make me sleep 6-7hrs.

if i do not sleep well for a day or two, then i take
- one large omega3 pill (2grams)
- 3mg melatonin
- hawthorn tincture 30 drops
- bromazepam 1.5mg (half pill)

In the past when i was in a lot of pain, i also used a sauna close to bed time, that also made me sleepy.

this always works. i usually don't require more than half a pill of bromazepam per week, usually im ok with just the rest of the meds on a nighly basis. but yes, i do not let myself with more than 2 nights of bad sleep ( <4hrs) in a row. Sleep is important both for lowering inflammation and for immune system function, so as i said earlier, do whatever it takes to sleep. if that involves taking prescription pills , then do it.

Being afraid of these drugs is silly, if you get a guy that is addicted to benzos and u tell him you have a chronic infection of the BRAIN with multiple secondary infections, and that there is no current treatment that heals you, and you are in pain almost daily, he will s...t in his pants, i tell you. your condition (chronic lyme) is way much worse than anything that can happen to you if you take some sleeping pills. as long as you take them in a responsible manner and try never to take more than what you aim to (like i said i never take more than half pill), then what is the problem ?


If we had a like button, you'd get one for this post.

What country is bromazepam from?
Posted 9/6/2017 11:45 AM (GMT 0)
it's the chemical, not the brand

/en.wikipedia.org/wiki/Bromazepam

Bromazepam (marketed under several brand names, including Lectopam, Lexotan, Lexilium, Lexaurin, Brazepam, Rekotnil, Bromaze, Somalium and Lexotanil) is a benzodiazepine derivative drug, patented by Roche in 1963 and developed clinically in the 1970s.
Posted 9/6/2017 1:00 PM (GMT 0)
You don't need chemicals to help you sleep. There are NUMEROUS ways you can figure this out.

Things to try:

*Epsom bath before bed (add a little lavender essential oil)
*Chamomile tea
*A herbal supplement called "Happy Campers" sometimes makes people sleepy. Not me, but other people have,
*Binaural or isochronic beats: /www.youtube.com/watch?v=VeqWDK6pE8o&t=13275s This one helped me a lot. Got me to sleep in half an hour.
*CDB oil
*I also have a lavender pillow spray called "This Works" and I spray it on my pillow before bed. Helps me relax.

If all else fails, I do all of them. LOL.It's also important to stick to a routine in the evening. Turning off screens an hour before bed, doing the same things every night, going to bed at the same time. It all helps our bodies prepare for a good night's rest. It's not always possible, but do your best.
Posted 9/6/2017 7:37 PM (GMT 0)

10LymeB said...
You don't need chemicals to help you sleep.

certainly use all the non prescription tricks suggested here FIRST.

but if you have days when they fail, dont sit sleepless for too long, your condition will deteriorate.

this is my advice. chemicals or no chemicals you can win this fight with sleep , antibiotics/herbs and diet changes. remove any of these 3... and good luck to you beating chronic lyme this way...
Posted 9/6/2017 10:02 PM (GMT 0)

c009j said...
Of the ones I'm familiar with I would suggest the trazodone. I agree with girlie on the seroquel. I'm unfamiliar with neurotin (gabapentin) being used for sleep. As far as I know that is usually prescribed for neuropathic pain, but it could be an off-label I'm not familiar with.

For the sleep apnea I think an alternative to cpap has been developed I can't remember what it's called but you could try looking it up. If I remember correctly it was made because the cpap machine is so uncomfortable to wear.

I've taken valerian in the past with no effects but that doesn't mean you'll be the same. My sleep professor in college said melatonin supplements are only good for jet lag (and she was fairly open to herbals). That being said I know people who swear by melatonin.

I don't know anything about the other meds on the list.

Thanks, c009j:

You're right, of course, about Neurontin (Gabapentin) usually being prescribed for neuropathic pain. My Doctor does sometimes prescribe it to help promote sleep, as an off-label use.

Is this the CPAP alternative about which you wrote?

Airing - The World’s First Maskless, Hoseless, Cordless Micro-CPAP Device
www.fundairing.com

The first CPAP mask I used was a "Nasal Pillow" mask that sat against my nostrils. When the airflow was engaged, I could keep my mouth closed only while I was still quasi-awake. Once I fell asleep, my mouth would open and all the air would rush out of my mouth - waking me. I tried a chin strap to try and keep my mouth closed, but this did not work.

The next mask I tried was a hybrid mouth/nose device, but this leaked air around my nose.

In the end, I needed a full face mask, but I quit out of frustration with the device and the process of getting a mask. I was given a CPAP machine by a family member. Because I didn't go through my insurance company, I had to get a prescription for a CPAP mask. How idiotic, since I can buy them online without a prescription. However, I needed the local CPAP supply house to help me find a mask that fit, since none of the CPAP components are returnable (whether online or locally). I work for a medical company and anything considered a "Medical Device" has a high price tag -- whether it's an MRI scanner, a CPAP mask, or even an air hose. It's a racket and part of the reason our healthcare costs are out of control.

Anyway, as you and others have suggested, I need to explore other non-pharmaceutical options first, before going the prescription medication route.

Again, thanks for your reply.
Posted 9/6/2017 10:31 PM (GMT 0)

mpost said...
wow, that is a huge list of sleep meds. this is what i do

- i do not drink coffee after noon time
- i drink generally green/black tea

at night i take
- one large omega3 pill (2grams)
- 3mg melatonin
- hawthorn tincture 30 drops

these generally make me sleep 6-7hrs.

if i do not sleep well for a day or two, then i take
- one large omega3 pill (2grams)
- 3mg melatonin
- hawthorn tincture 30 drops
- bromazepam 1.5mg (half pill)

In the past when i was in a lot of pain, i also used a sauna close to bed time, that also made me sleepy.

this always works. i usually don't require more than half a pill of bromazepam per week, usually im ok with just the rest of the meds on a nighly basis. but yes, i do not let myself with more than 2 nights of bad sleep ( <4hrs) in a row. Sleep is important both for lowering inflammation and for immune system function, so as i said earlier, do whatever it takes to sleep. if that involves taking prescription pills , then do it.

Being afraid of these drugs is silly, if you get a guy that is addicted to benzos and u tell him you have a chronic infection of the BRAIN with multiple secondary infections, and that there is no current treatment that heals you, and you are in pain almost daily, he will s...t in his pants, i tell you. your condition (chronic lyme) is way much worse than anything that can happen to you if you take some sleeping pills. as long as you take them in a responsible manner and try never to take more than what you aim to (like i said i never take more than half pill), then what is the problem ?

Hi, mpost:

Indeed, the list of medications to help promote sleep was quite long. Thanks for sharing the routine that works for you. I'm happy that you have a plan that works for you. I certainly agree with you about the critical importance of sleep to healing.

As for me being "silly" for being afraid of these (or, other) drugs, well...I guess I'm guilty as charged. But, you have to meet people where they are. If I could do better, I would be doing so.

My concern about any drug is they're man-made and they have intended and unintended side effects. Vioxx is a good example of how a drug can quickly fall from grace. That drug allegedly contributed to the death of over 500,000 people.

But, as far as intended and unintended effects, I suppose the same can be said for supplements -- which is why I've even become cautious about them, too. Again, call me silly, but it will take time to tell the true safety of any product, whether prescription or not.

Anyway, back to the drugs...

I already deal with anxiety, so reading about the side effects (unintended effects) causes me to really weigh risk vs. reward.

Here are some of the "More Common" side effects for some of the drugs in my original list:

- Blurred vision
- Change in walking or balance
- Chills
- Clumsiness or unsteadiness
- Cold sweats
- Confusion
- Continuous, uncontrolled, back-and-forth, or rolling eye movements
- Crying
- Difficult or labored breathing
- Difficulty in concentrating or paying attention
- Dizziness
- Dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
- Double vision
- Feeling of constant movement of self or surroundings
- Lightheadedness
- Mental depression
- Sensation of spinning
- Shortness of breath
- Sleepiness or unusual drowsiness
- Tightness in the chest
- Unusual tiredness or weakness

I've already experienced some of these symptoms, even without medication. And, because of my hyper-vigilance and anxiety, I've ended-up in the Emergency Room many times.

Oh, there's also the concern about some of the drugs being habit-forming. That's certainly something I don't want to happen, either.

So, again, maybe I'm irrational, but I'm doing the best I can do, considering my circumstances.

I wish you well.
Posted 9/6/2017 11:46 PM (GMT 0)
Hey , The Dude Abides, you sound a lot like me- I am also dealing with anxiety/ fear associated with prescription meds , and related to treatment options. I don't know if my anxiety with medicine is entirely rational or if some of it is related to my Lyme induced anxiety.

I have a lack of faith in the medical community & it causes me to second guess everything. I think it's good- to a point , because as you mentioned , so many meds have the potential to cause some serious side effects! But I keep thinking that unless i decide to totally treat on my own w/ herbs, I need to make Some kind of jump & try something the doc prescribed. I was given doxycycline by an llmd last week & still can't decide if I should take it. Just haven't been able to make myself do it .

I have been taking herbs though- they don't make me nearly as nervous!

As I mentioned in a previous post, I did try the trazadone the LLMD prescribed, I'm still not sure how I feel about it. I lowered it from 100 mg to 50, and have started taking it way earlier. The next day effects do gradually seem to be lessening, but I can't really say it's helping me sleep much. At most I'm getting 2 hours at this point- its more than I get without- but I'm not impressed. Not convinced that it's worth putting a drug into my body for 2 hours of sleep - especially when there are some side effects still. I am trying to stick with it for a little longer b/c some people have said the side effects go away.

Hope you're able to find something that helps you get some sleep without any unwanted effects. And also hope you're able to make your treatment decisions with the least amount of anxiety possible!
Posted 9/7/2017 12:49 AM (GMT 0)
Ok, here what I take at about 1/2 hr before bedtime and I do sleep.

1/2 dropper of melatonin
1 tsp Salvia miltiorrhiza(Red sage)
1 tsp Scutellaria baicalensis (skullcap)
2 500 mg capsules of L trytophan
2 150 mg capsules milk thistle
1 800 mg capsule Ashwagandha
1 Gabatone capsule
1 Dapatone capsule

But what I really think helps is that during the day I take supportive supplements in the Am and after lunch that also build towards my having a good sleep and helping my brain recover and heal form neuro Lyme.

Consider looking at what you do all day and maybe there is a way to plan a protocol that will build toward more restful sleep.


Take care and I hope you are able to find something that helps you with this issue. Jo
Posted 9/7/2017 3:20 AM (GMT 0)
The Dude Abides,

I would highly recommend looking into doing an herbal / OTC combo for sleep issues related to Lyme, especially if you are wary of pharmaceuticals. I'm not a medical professional, but taking a prescription anti-psychotic medication just to fall asleep is completely insane.

Definitely speak with your Dr. before trying this, and don't mix it with another sleep aid or sedative, but a dose of Nighttime Pain Reliever / Sleep Aid (Tylenol PM) along with L-Theanine, L-Tryptophan, and Ashwagandha may help. This is the combo that I take, and I'm asleep within an hour of taking it and sleep uninterrupted for 8-12 hours. I've had sleep issues for years, even prior to Lyme. The Acetaminophen in the pain reliever helps with muscle / joint / nerve pain, the Diphenhydramine in the sleep aid and L-Tryptophan induce drowsiness and help you stay asleep, and the L-Theanine and Ashwagandha help reduce anxiety.
Posted 9/7/2017 4:07 AM (GMT 0)
Dude,

I tried many things for sleep, and a couple Rx's which I didnt like and were my LLMD's idea.

After many trials, what ended up working for me was a similar to "Intuitions" approach; all angles:

1)Night time pain reliever/sleep aid- a generic Ibuprofen PM - worked slow, but long, helped body pain
2)1/2 dose Night time sleep cough syrup (not cold or flue) - it works faster
3)400mg Magnesium Glycinate- calms nerves and brain, helps AM regularity

Plus in times of high stress:
4)Valerian root capsule or lavender or chamomile (very similar)- calming herb capsules or tea 1 hr before bed
5)Holy basil when adrenals were really off (for 3AM wakenings)
6)5 HTP - neurotransmitter or 5mg lithium orotate (neurotransmitter booster)- when anxiety was nuts

Also, I went to bed realy late (head snapping tired) as opposed to early- this helped get deep sleep. 5 hrs deep sleep (dreaming) was better than 7 -8 hrs of shallow sleep (laying there with eyes closed LOL).

Now most nights I have "deep sleep"- and can get out of bed in the AM. Haven't had to take all that stuff together for about a year. I will always take magnesium though.
Posted 9/7/2017 2:25 PM (GMT 0)
Casa11, goshawk, Intuition, and astroman:

Thank you all so much. I appreciate your sharing your personal experience and suggestions. Now, I feel better informed and more confident I can find an alternate solution to the list of medications my Doctor suggested. If nothing else works, then I'll revisit the prescription medications. But, I have a lot of options to try first! Again, I sincerely thank you.

The Dude
Posted 9/7/2017 2:44 PM (GMT 0)
That link you provided I don't think was the machine I was talking about(it looked interesting though). It could have been a mouth piece like Girlie was mentioning. I really can't remember sorry :/ it was 3 years ago that I had my sleep class.

Found this website with some alternatives though: sleepjunkies.com/sleep-apnea/cpap-alternative-treatment

It could have been Provent but according to that site it's more expensive than CPAP. :/
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