This is topic cant sleep at all...suggestions? desperate! in forum Medical Questions at LymeNet Flash.

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Posted by merrygirl (Member # 12041) on :
Ok, i am pregnant so not a ton i can do i know.... but i am desperate for relief.

I have severe insomnia, sleep apnea, pain, restless legs, neuropathies, sweats, and i wake up and stay up for hours a.night.

I havent slept through the night in many months. But now its real bad. I already take too many rxs even for a non pregnant person. I really really dont want to add another.

But i feel the stress on my body increasing from not sleeping.

i can take many things at once and not be a bit drowsy.. Its a little scary.

My docs are aware of al these meds, so please no.lectures!

I have to sleep with cpap too. I have tried iron, mag, b12 warm baths, snacks, obviously the meds, i cover my eyes, wear ear plugs and run a fan. I cant sleep in the same room as hubby either. I have tried unisom and phenergan.

So believe me i feel like i have exhausted everything.

I called my sleep doc. he suggested requip, and wanted me to.ask ob if that was ok. They said it was not suggested. But the ob is always less than helpful to me. They offered no other suggestions. So i decided against the requip for now.

I can not fall asleep in the day either. Not even a minute.

I really dont call my docs unless i am desperate. They dont seem to realize that. I do see my peri tues so i can pick her brain, at least she gives a crap.

I just dont know what to do. The stress on my body is reaching its max. I constanty feel restless and agitated but fatigued.and ready to fall over. My mind does not ever rest and i feel like vibrating. I guess i woud say it feels like i drank 100 cups of coffee. I have tried a million relaxation breathing techniques to no avail.

I am also on bedrest, so being in bed 23 hours a day and not sleep is torture. I could go into preterm labor at any time. I was told not to stress. My baby is not ready to come out yet. But i know i am going to get stuck in the hospital soon if things continue. My body cant take much more.

I was already at the hospital all morning.

If you have suggestions please share. I should tell you that i am not an herb person, so i likely will skip all that. Just being honest.

Posted by merrygirl (Member # 12041) on :
Thank you. I decided to. Take out the meds i was on.. prob not the best idea to post them here...all i need is some lunatic after me....

I am actually hypothyroid. On meds. been getting levels checked monthly. So that ok.

I am sure hormones are not helping. One min i am sweating, next freezing.

I did have to start with progesterone injections weekly to try to prevent preterm labor. But this was going on before that started. But it is worse now.

I cant stop the injections any time soon either.

So frustrating. I used to sleep ll the time day and night, not that this is a better solution, but it made time go by a lot faster
Posted by Razzle (Member # 30398) on :
GABA is an amino acid that helps calm the nerves and may help improve sleep. I wonder if that would help you? Would need to make sure is safe during pregnancy, but it is a substance the body makes but sometimes Lyme & co's or other things can upset the body's natural production of GABA.

Melatonin is another substance that occurs naturally in the brain that helps us sleep. I know Lyme messes with this one... Can get this over-the-counter in many health food stores. Again would need to check if ok with being pregnant, but otherwise I know many who think this stuff is great, and it help to support the immune system too...

Anemia can cause or aggravate restless legs, so might be good to check your blood counts.

Some of the meds you are taking also can cause restless legs as a side-effect. I use homeopathy to treat restless legs, but I don't know if you are interested in isn't herbs per se, but isn't considered "mainstream medicine" here in the US. Let me know if you are interested and I'll PM you the info about what I use.

Other things that may help sleep: Relaxation techniques (guided imagery, meditation, etc.), gentle exercise (such as walking, stretching, deep breathing, etc., if safe for you to do, and as tolerated), establishing a sleep routine (there's lots of info on this online...), making sure your current meds aren't contributing to your insomnia, acupuncture, herbs, homeopathy, etc.

I hope this helps, and that you feel better soon. Take care,
Posted by TrishM (Member # 28976) on :
I can't imagine. I've gone thru the no sleep times but not pregnant. I know you will get through this though because you are mother and you have the support of us here.
Pull out pictures of happier times and remember the blessings you have. When I was bedridden for 2 years i spoke with people who understood. here and on lymefriends. I would daily think of one thing I was grateful for and it would get me thru the day. i allowed my body the rest, awake or asleep, it needed so it could heal. There are herbals/natural sleep products available that will make you sleep. Maybe you can ask your DR. for a suggestion and give it a chance. I was never one for herbals until they saved my life.
I look forward to seeing pics of the baby when he/she arrives. One day, one moment at a time...
Posted by map1131 (Member # 2022) on :
Have you tried detox bath with epsom salt & lavender in the evenings before bedtime?

Merry, you need your rest.

Posted by RDaywillcome (Member # 21454) on :
I also had thyroid problems, but meds don't help, unless you get the lyme treated!

Have you been on rocephin i.v.? It sounds like they haven't treated you enough for your neuro.
Posted by RDaywillcome (Member # 21454) on :
Posted by Lymetoo (Member # 743) on :
What i use:

trazodone 250 mg
Posted by Carol in PA (Member # 5338) on :
Merrygirl, are you still taking B12 and B vitamins?
They have done alot for neuropathy symptoms, but if I stop taking them, it comes back.

Are you taking magnesium every day?
I had pre-eclampsia with my first pregnancy, and much later I found out that it is associated with magnesium deficiency.

Eclampsia is a condition with pregnancy where the blood pressure goes up, you retain fluids and have edema and swelling, and you can go into convulsions.

They can treat it with intravenous magnesium.

I'm so sorry that you're feeling so crappy.
Have you tried listening to music with earphones?
I found that a meditation tape with binaural beats was helpful for migraines.

Hugs, Carol
Posted by RDaywillcome (Member # 21454) on :
Trazodone knocked me to the floor! Please be careful with the drugs you take.
Posted by lpkayak (Member # 5230) on :
i use vistaril-the generic doesn't work

i found this online:

I start by recommending natural remedies such as glycine, L-theanine and GABA.

Dr. Zhang has a fantastic product called Herb Som, which contains schizandra.

To overcome insomnia, it is important that those with Lyme find supplements that promote their GABA pathways.

prescription of Xyrem, which seems to help when all else fails.
Posted by merrygirl (Member # 12041) on :
I suppose i should be open minded about herbals
melatonin worked for a coupe days but that was it. This was before pregnancy. I think i heard melatonin is not good to take while preg. Not sure.

I was thinking this is a neuro problem too. I did 30 days of rocephin in the beginning. Once this baby is born and settled in. I m going to blast this lyme with everything i can. I am so done with it!

I have been anemic so that is not helping my rls. But my rbc count went up to 37 after starting the extra iron.. take mag, but only a few times a week. Its seems to give me diarrhea if i take it everyday. i take b vits and vit d3 plus prenatals.

I am diabetic so blood sugar definitely is a factor.

Well off to bed. Please God let me get some good sleep!

Thank you everyone
Posted by RDaywillcome (Member # 21454) on :
melatonin caused strange nightmares and awakening.

Please be careful what you take.
Posted by RDaywillcome (Member # 21454) on :
I was told by a very reputable LLMD that taking any B vitamins, will only feed the bacteria. Kind of like steroids! Please be careful.

You CAN'T BELEIVE everything you hear. God Speed.
Posted by Lymetoo (Member # 743) on :
B vitamins are necessary for good intestinal health.

Neurontin would help too.. also helps RLS. But I dont know if you can take it while pregnant.

you have to get the timed release melatonin and take plenty of it .. by itself, it does not work for me

I use Source Naturals from Vitacost.
Posted by RDaywillcome (Member # 21454) on :
B vitamins are NOT helpful! They feed the bacteria just like ANY steroids!
Posted by RDaywillcome (Member # 21454) on :
Lymetoo, I got B12 shots for a length of time. I kept getting sicker with weird symptoms.

It stopped me from getting a positive diagnosis.
A TOP NOTCHED LLMD KNEW that it was feeding the keetes!

Unless you know under every circumstance...don't give out advice!
Posted by gatorade girl (Member # 24896) on :
If you are taking the b vitamins make sure you take them in the morning. They might be keeping you awake. I hope you don't mind me asking, but why are you on bed rest? Were you having preterm labor? I had that with both pregnancies. How far along are you? Feel better
Posted by kidsgotlyme (Member # 23691) on :
Just a note on the vitamin B's. I went and looked at Dr. B.'s guidelines, and he says that you SHOULD take the B's.

If my daughter didn't take them, her neuropathy would be much worse. I'm not saying it's for everyone, but it does help many people.
Posted by lululymemom (Member # 26405) on :
I second Carol in PA.. Magnesium is crucial for lyme patients and using the right one is even more important..

In the meantime, drink chamomile tea, it has very relaxing properties. I used to read every night to get to sleep but now the magnesium does it's job really well.
Posted by Dogsandcats (Member # 28544) on :
Posted by philly78 (Member # 31069) on :
I take melatonin and 5 HTP, but not sure how they would factor in with you being pregnant.

You could always try a "calming routine" prior to getting to bed. Take a warm bath. listen to relaxing music. Drink a warm cup of tea...I have so many different teas and one is a night time tea.

Have you ever done guided imagery? That would help. You could also try some prenatal yoga techniques but not sure how that would fit into what you are and aren't supposed to do.

What else....prenatal massage, deep breathing exercises (always breathing in and out through your nose. Exhaling through the mouth is not recommended like some suggest) There is also progressive muscle relaxation but I wouldn't suggest this if you are an anxious person. The first time I did this, it freaked me out! I think it was because at the time, relaxation was completely foreign to me!

Just make sure you check with the OB/GYN concerning the muscle relaxation, yoga and stretching.
Posted by merrygirl (Member # 12041) on :
I personally dont agree about b12 /bvits feeding the keets. I was taking injections several times a week, they only helped me....

I am 27 weeks tomorrow, on bedrest for a short cervix.

I couldnt take 5htp, made me vomit in the past.

I really would like a massage, but i am really not allowed to go anywhere. I need to stay flat as much as possible so i can keep peessure of the cervix. i also really dont like people touching me, but i thought about the massage.

Beadryl does nothing.

I did get some sleep last night so i was greatful.
Posted by gatorade girl (Member # 24896) on :
Every week is a blessing. Congrats on your 27 weeks! I am glad you were able to sleep. Feel better.
Posted by Beth22 (Member # 30232) on :
i've been taking a super b complex every day, from the beginning, suggested by dr. b and confirmed by my llmd. how can you know who's right and wrong?
Posted by scorpiogirl (Member # 31907) on :
Bummer that you are on bedrest... I was going to suggest acupuncture but that would be hard since you can't leave your house. [Frown]

One of my worse symptoms has always insomnia and recently I had a test done and found out my cortisol levels are way off so needless to say I have not had restful sleep for almost 3 years! Nothing helped me except acupuncture. The first time I had it done I thought the Dr had drugged me for I fell into a deep deep sleep and she left me there sleeping on the table. Then I went home and slept all day and night! The second time I actually demanded to know what she put in the needle!! She laughed and said nothing, just a sterile needle. Well after 12 weeks of treatment 3x a week my sleep improved significantly. And I had ZERO side effects!
Posted by djf2005 (Member # 11449) on :
If you won't take herbs/vitamins and can't add RXs, didn't you answer your own question?

Hang in there.
Posted by merrygirl (Member # 12041) on :
I wasnt just looking to pop a pill.
Posted by djf2005 (Member # 11449) on :

What were you looking to do?

Besides meditation, breathing, baths, and the like, pills are about all that is left.

I am going through the same thing currently, hang in there. It will get better.
Posted by merrygirl (Member # 12041) on :
I dont really know. Just want to catch some zzzzz.....
Posted by Carol in PA (Member # 5338) on :
Merrygirl, are you doing range of motion exercises and stretching?

Are you taking good fish oil?
Fish oil improves the integrity of the cell membranes.
Oxygen and nutrients pass into all cells, and carbon dioxide and waste products pass out.

I feel better and have reduced symptoms when I'm taking it.
Posted by dmc (Member # 5102) on :
According to the Dr. B's guidelines Page 27

"Clinical studies demonstrated the need for supplemental vitamin B in infections with Borrelia, to help clear neurological symptoms.

Take one 50 mg B-complex capsule daily. If neuropathy is severe, an additional 50 mg
of B-6 can be added. Generics are OK."
Posted by merrygirl (Member # 12041) on :
I gotta be honest. Not doing much stretching or moving at all. Sometimes too weak. I am at risk for blood clots i am on lovenox inj 2x a day....

I think my prenatals have dha, is that fish oil? I would never be able to hold down (or swallow) the fish oil caps. They made me sick before i was sick now with hyperemesis, i dont even want to push my luck. I am already down 24 pounds. I did read its a good blood thinner....
Posted by Carol in PA (Member # 5338) on :
When lying on your back, lift each leg individually and point toes. then draw them back towards you.
This helps to stretch out the muscles.

Lift the leg partway up and bend your knee up and down.

Rotate each ankle clockwise and counterclockwise.

Lift your knees, keeping the soles of your feet on the mattress. Let the knees fall apart sideways, which stretches the groin muscles and rotates the hip joints.

When lying flat in bed, put a pillow under your knees.
This flattens the small of the back, relaxing the muscles there.

Once the uterus is large, lying on your back will make you feel sick and really awful, as the weight of it presses on a major blood vessel in the abdomen.
Ugh, I still remember how this felt, 25 years ago.
Posted by nefferdun (Member # 20157) on :
Something is WRONG if you are not sleeping during pregnancy. Progesterone is the hormone that keeps you pregnant and it makes you sleep extremely well. I was a life long insomniac but when I was pregnant I slept "like a baby". It was after the birth of my children when my progesterone levels fell that I could not sleep.

Sometimes, usually after birth, women get thyroiditis which is an over active thyroid. I had it and it is miserable. It usually resolves on it's own. It can be brought on by stress, a virus or any number of things. I would suggest you get your thyroid levels checked. This might affect you baby as well.

If you are towards the end of your pregnancy, then your progesterone levels might be falling to prepare for birth. I would get those levels checked to be sure they are normal.

If something is wrong, all the supplements in the world will not put you to sleep. I know because I have been through it.

The best thing I know of for sleep that is natural is Corydallis root but I don't think you should take it while pregnant because it is also a pain killer. It is related to opium and has half the sedation effects as morphine.

Editing to add corydalis is one of the ingredients in Zhang's Herbsom.

Sure hope you find relief.
Posted by merrygirl (Member # 12041) on :
I am on progesterone injections to try to prevent pre term abor, so my levels of that should be ok. I am hypothyroid and my levels are checked monthly.

Weird thing is i have had a headcold the last few days and could not breathe through my nose so i couldnt use cpap. I have slept better without it. Strange. I mean it is super annoying to have a mask digging into your face and dripping sweat too. but i stop breathing every 5 minutes or so according to my last sleep study, decreasing my o2 and that will make baby get less too.

Also it can make your blood sugar wacky, so i have to wear the dumb thing.

I THINK i might be taking my ambien too early. I shoud take it and try real hard to go to sleep, sometimes i fart around and maybe the help falling asleep is too late? I do have severe anxiety and it has always been worse at night i am sure thats not helping.
Posted by merrygirl (Member # 12041) on :
Carol, thanks for the pt advice. I gotta start doing it. My calves hurt bad.
Posted by Bluemoon (Member # 25255) on :
For me ambien and glycine (3 grams). I take it immediately before laying down for bed, and in the middle of the night when I wake up.

Taking it and doing some other activity is not a good thing to do in my opinion.

Here is some info on meds and CFS:
Posted by TerryK (Member # 8552) on :
merrygirl- I have sleep apnea too. If I don't change my mask often it leaks and I don't know it is leaking until the card is read from my machine. When it is leaking I have more difficulty sleeping. That does not seem like it would make a difference for insomnia though.

Have you contacted your sleep doctor and asked if they have any suggestions for you?

I have a gel mask that does not press much on my face. If the straps are making a mark on your face they are too tight according to my sleep doctor.

When your nose is stuffy, try the breath right strips. They can be helpful because they hold your nose o[en and make breathing easier.

Some who have the blood clotting issue have a MTHFR mutation. I started to sleep so much better after I found out I had it and started the active form of folic acid. Many ppl sleep better when taking it. I don't know if you would but the product that is recommended is called folapro. You do need to be careful about taking other types of folic acid with it because they compete.

I hope you feel better soon.

Posted by merrygirl (Member # 12041) on :
Thanks for the info. I just saw my sleeo doc 6 weeks ago or so. He seemed happy with things. He was very glad i was conpliant, i wear the damn thing daily. I also just got the best machine they make about 5-6 months ago, so thats not an issue.

I do get new supplies and mask every 3-4 months, .i am due. I did call thursday for new supplies because my hose had a leak. I asked them to overnight it since i need it and pregnant and all....but it didnt come, still not here. They are going to get an angry call in the am.

My sleep doc checks my mask fit and my settings everytime i go. He is always pressing buttons and messing around with it.

He showed me a number to watch and if it gets to a certain point i have to let him know. My machine also tells me if its leaking.

Sleep doc said i dont have to go back for 6 months as long as things go ok (which they are not) but i really cant go see him since its an hour each way, so 3 hours out of bed is too risky.

I called him last week. He asked about my rbc, he said since i am a bit anemic that will make rls worse, but i cant take any more iron, and my rbc is going up. the rls is better than when my rbc was lower. I get that checked again this week.

He suggested a dose of requip if my ob okd it. But they said i shouldnt. So i am not.

Sleep doc said the further along i get, the more pressure i will need, but he set the machine to decide when it needs to increase the pressure, so i should be all set.

I do think i wear my mask a bit tight so maybe i will try loosening it.

I would like to try the nasal pillows, but i cant go try them on. I could prob get a respiratory therapist to come to my house, but i think i need a rx.

I know my options are limited, but you folks are giving a lot of ideas, so thank you
Posted by merrygirl (Member # 12041) on :
i would be curious to have a sleep study just to know whats happening, but its an hour away and the info would only be valuable while preg, so would be interesting though. I do hate sleep studies too!

I get about 800mcg folic acid a day, is that enough?

I dont think i have a clotting problem, and i was told that the blood tests wouldnt be accurate since being preg can cause false pos. At least thats what the er doc said when i had a blood clot scare. I take lovenox too.
Posted by Carol in PA (Member # 5338) on :
Originally posted by merrygirl:

My calves hurt bad.

I was able to relieve the aching in my calves with B12.
I took it sublingually every eight hours in the beginning, then down to twice a day, now once per day.

Posted by Rumigirl (Member # 15091) on :
I only read the first few posts, but what about Xyrem? I don't know if that is ok to take when pregnant. You'd have to check that out first. It is something that our bodies make naturally (assuming everything were working correctly!).

If it's safe to take when pregnant (they probably don't really know!), it's sort of a deal to get rx'd. Only drs who are registered to rx it can. And you get it from one pharmacy only, they mail it to you. Often LLMD's rx it. Or a sleep doc or pain doc, maybe.

It doesn't last all night, you have to take another dose in the middle of the night. But it DOES get you to sleep for sure. Don't be scared off about this one. See if it's safe for you, it does work.

Another idea: can you give yourself your progesterone an hour before you want to sleep? It can make you sleepy.

Gabatril 1-2 mg can get you to stay asleep. It is a med (anticonvulsant).
Posted by Jason21 (Member # 16393) on :
I had severe fractionated sleep about 3 years ago when my LD symptoms really kicked in. I would wake up about every hour. My problem was not falling asleep, but staying asleep.

The fractionated sleep got much better after 2 years of abx, but I continued to awake around 3-4 a.m. and would not be able to go back to sleep.

I tried just about every sleep med (Ambien, Lunesta, Rozerem, trazadone), but they either had no effect or had the opposite effect. I did not try the Xyrem that others mentioned above because I could not find a doctor who would prescribe it.

I finally settled on 30 mg of Restoril (temazepam) that I would take when I woke up in the middle of the night. I did that almost every night for 2 years, but still did not feel I was getting restful, refreshing sleep.

I had a sleep study done that showed I was only getting 50 minutes of decent sleep per night.

The sleep specialist was not much help. There are a couple of meds that promote deep sleep, such as gabatril and remeron, but he would not prescribe them for me. I think his main thing was treating sleep apnea, which I definitely did not have.

Eventually, I got my family doctor to refer me to a neurologist that I knew and trusted.

The neuro put me on 30 mg of remeron, and it seems to have done the trick.

I have been on remeron for about 6 months, and I usually sleep for 7 hours straight and awake feeling refreshed about 95% of the time. If I have a bad night, I use some of the Restoril to go back to sleep.
Posted by merrygirl (Member # 12041) on :
Thank you for your help. Xyrem? Hmmmm.. i will check it out.

I used to take restoril, it worked great, i cant remember why i stopped it. You def cant take that while preg.

I have actually slept ok the last few nights. I have been taking the ambien and going to bed right away. I dont know if that is whats working, but i am not complaining!

I coud try the progesterone in the pm, but i only take it once a week and it doesnt seem to make me sleepy.

I had a good appt today with good news for once. Things look better than last week! Feel relief.
Posted by Lymetoo (Member # 743) on :
Originally posted by RDaywillcome:

Unless you know under every circumstance...don't give out advice!


All we give out here is ADVICE and OPINIONS. Not everyone's opinion is the same. I've been taking B vitamins, including B12 shots for about 6-7 yrs. Actually have been taking the B's since about 1999.
Posted by map1131 (Member # 2022) on :
merry, have you tried epsom salt bath with lavender oil like I suggested above. Evening before bedtime:

2 cups epsom salt in warm water
Lavender 8-10 drops in water-swirl

I'm reading my essential oil book. No warnings for pregnacy. Check with ob-gyn first.

2-3 drops in diffuser or place small amount on cotton ball and place inside pillowcase.

Walmart has pre-mixed epsom salt with lavender mixed in that I like real well.

I think bath will calm muscle and painful areas and help you relax.

I use essential oils for many things. I have a basket in my kitchen with my Essential Oil basic book. Even my grandson know how much better their boo boo feels with Nana's oils.

Essential oils are fabulous to use in diffuser and burn with tea candles (unscented) I use oils for different moods, health issue of the day, clearing my mind, relaxation.

I add recommended drops of oil and then add warm water, light the tea candles and add one drop of dishwashing detergent. Oils last much longer and are not so strong smelling for those sensitive as myself.

With diffuser I don't need to worry about burning the house down if I forget to blow out tea candles before bed. The diffuser is sitting on kitchen countertop and nothing around to catch on fire.

I learned the hard way about candles and wax running down the counter and melting wax all over my carpet. I'm too absent minded for burning candles.

Posted by sparkle7 (Member # 10397) on :
These CDs can help-

Ambien helped me but I stopped it because I didn't want to get to dependent on it.

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