Sleep and the drugs that stop working

[Misfit Toy]

@meeKO, here....if you go to the right doctor he will give you ketamine. They also use it for migraine relief here. My doctor who is a CFS doctor was open to the idea of me trying it for pain and it really does work. And also helps me to fall back asleep.

It's a really small dosage not like the pill of the tranquilizer for the horse. However they do have the IV which is much more intense and I would never want to do unless I had RSD. Or a migraine that just wouldn't kick it. I live near Philadelphia in the states and Ketamine is given here extensively at the teaching hospitals for RSD and especially migraines. The #1 migraine center is in Philly...in the whole of the country. Ketamine is given as an IV regularly for migraine sufferers here.

Did your wife try ketamine? It can also help with depression. Ketamine is actually an awesome drug. It calms the brain down.

Yes, I rotate sleep meds but I take Klonopin every night. I will take Tizanidine or restoril or ambien...I will take one of those with the Klonopin and then sometimes an added one like Ativan.

Sleep is very hard for me. I have like 10 squirrels running around in my brain. My sleep stages are a mess.

Sometimes I only sleep for three or four hours and wake up and then I'll just have to take another medicine to get back to sleep. Sleep for me, like everyone, is so essential because I have major pain. The more sleep, the less pain I have.

 

[meeKO]

Yes she tried Ketamine infusion to hopefully get off sleep meds. Unfortunately the staff at the clinic were very dogmatic about scaling down her meds so she couldn't sleep which culminated in an unbearable fibromyalgia flare up. It was intense and although the infusion did wonder for her OI she ultimately came out on more meds than when she went in!!

So she totally understands the kind of sleep you're talking about. So essential to keeping symptoms manageable. I think that can be pretty misunderstood too sadly.

I hope you can achieve more ideal sleeping patterns also.

Cheers!

 

[Andrew]

First, I can understand her great concern about sleep. Having shattered sleep makes me feel horrible all day long. I experienced this for years, until I found a solution. And recently my sleep started to fall apart again and I was fearful that I was condemned to years of sleep-deprived misery again.

Anyway, I noticed you are only taking one thing that is specifically for sleep, which is zolpidem (marketed as Stillnox). I used to take it alternating with eszopiclone. I would switch every two days to avoid tolerance. A naturopath talked me into taking only one, because then my body can adjust to it and work in harmony. Within a month or two, it stopped working. And it has never worked for me since. I should have gone with my instinct instead of listening to the naturopath. The issue of building tolerance is real, and I'm lucky to have a doctor who agrees.

Here's what I do now, and I think it is all part of what makes my sleep work.

1. Sleep meds. I alternate 3mg eszopiclone with 30mg temazepam every two nights. Alone, these don't give me great sleep. But they give me less shattered sleep. Until I added...

2. Melatonin (9-12mg). This alone will not put me to sleep. But in combination with the above, I get something resembling decent sleep most nights.

3. I take the above 1 hour before bed time

But that's not all there is to it as I was recently reminded when I stopped doing some things I was doing before. In fact, I thought my sleeping aids had stopped working, and I was in such a panic I stated adding on over-the-counter sleep aids. But when I started paying attention to the below, it started working again. But how long remains to be seen. I hope my renewed success is not fleeting.

4. I blocked my bedroom windows so no light enters. I live in an apartment building and there are lots of lights outside my window.

5. I let fresh air into my bedroom before bedtime. If it's cold ouside I might do it for only 10 minutes. I don't have to do it every night, but I do have to do it at least a couple times a week.

6. I found that what I wear can make all the difference. I've had nights I could not sleep (with all of the above) so I changed night clothes and slept well. Lately I've been wearing knit pajama pants and a long-sleeve v-neck tee-shirt.

7. I don't watch TV right before bed. And some nights I when I have a lot of trouble I use a pillow speaker and listen to relaxing music. This is to distract my mind.

That's all I can think of now.

 

[out2lunch]

Yes she tried Ketamine infusion to hopefully get off sleep meds. Unfortunately the staff at the clinic were very dogmatic about scaling down her meds so she couldn't sleep which culminated in an unbearable fibromyalgia flare up. It was intense and although the infusion did wonder for her OI she ultimately came out on more meds than when she went in!!

She sounds like a candidate for Xyrem. Fibros who intensely flare from lack of sleep are the ones who seem to do the best on the drug.

Did your doctor ever discuss this with you?

 

[meeKO]

Hi @out2lunch No we've never heard of that. I'll do some research now and see what it's about.
Thanks!

 

[out2lunch]

Hi @out2lunch No we've never heard of that. I'll do some research now and see what it's about.
Thanks!

I wish I could take it but can't for two reasons. It makes apnea worse, so my sleep neurologist doesn't like his CPAP patients using it, and it personally made me psychotic.

About 15% of people who take Xyrem end up with psychiatric disturbances while using it. But my functional medicine doc has other fibro patients who do well on it and have really lessened their symptoms because of it. There's another thread on the boards where this is being discussed regarding a sleep study in the UK I think.

If I had these problems with sleep like you've been describing, I would definitely consider Xyrem. When I took it for about a month, it did lessen my fibro pain a great deal. I was more fatigued on it because it worsened my apnea (didn't know I had apnea at that time), and it slowly turned me paranoid. That happens to some people. But it definitely knocks you out. It's an anesthesia, essentially. And it puts your brain in the deeper levels of sleep which I barely get into these days, per the PSG sleep study I had done in a sleep lab without CPAP.

According to the sleep study, when I sleep (like most fibros), I bounce around between Stage 1 and Stage 2. I get less than 10 min of Stage 3 sleep each night, and never go into Stage 4. According to my sleep neurologist, Xyrem puts you into Stage 3 chemically. That's why fibros do well on it. Stage 3 deep sleep relaxes the muscles fully, allowing your body to recharge.

 

[meeKO]

Thanks @out2lunch
Looks like a full on drug but we're off to see the clinical pharmacologist and BP specialist today so we'll get his take on it.

Deep sleep is incredibly important so if something helps that and the fibro pain at the same time it's definitely worth a look.

Glad it worked well for you.

We also have a sleep specialist coming up so they might have something to say on it all too.

Thanks!

 

[meeKO]

Hi @Andrew
Thanks for weighing in.
Yes stillnox is very rarely taken, same with valium but the other have been a help in the past.

I would switch every two days to avoid tolerance.

Yes indeed. This is what we're discovering from the good people on the PR forums. Thanks for confirming. Just have to get a couple more to start cycling...

2. Melatonin (9-12mg). This alone will not put me to sleep. But in combination with the above, I get something resembling decent sleep most nights.

She normally takes 6mg of Melatonin which helps ease her along with her combos.

I think sleep hygeine is very important too. Normally she is very diligent but it can easily slip. These are really good tips.

I stated adding on over-the-counter sleep aids.

Yeah it seems in addition to a benzo these can be really effective.

Thanks for the great take on sleep.
Please keep us posted on your battle and I hope you're sleeping soundly right now!

 

[Misfit Toy]

@CantThink -I too was on Xyrem. I only took it one night. When I woke up the next day. I couldn't remember the day before for hours. I laid in bed for four hours too out of it to move. Then, I started urinating constantly and like a race horse.

That is a common side effect, as it's a diuretic. And when I had to go...I ran to the bathroom.

As the day progressed, I had anxiety so bad, I put a call into my doctor. My mind was flying on it. I had to take Valium to stop my flying and racing mind.

I wanted it to work because I had no pain the day after taking it. It was like a miracle. But instead, I felt nuts on it and kept peeing every 5 minutes.

Having said that...I think one should try it. It may work for your wife, meeKo. Everyone is different.

 

[alice111]

I used to think that the medication I usually take for sleep, Trazadone, lost it's effectiveness every few weeks. Since starting on a FODMAP diet a few months ago, however, I have noticed that I am sleeping much better than before (sometimes through the night!), and I only had to swap the Trazadone for something else (Zopiclone, which makes me feel awful) when I didn't stick to the diet and my GI symptoms flared up again.

If your symptoms seem to be mostly gut-mediated, like mine are, I would suggest giving the FODMAP diet a try - my condition has improved considerably since I started it, and the improvements in sleep have been a big part of this.

@msf do you have any links to fodmap diet examples? Could you elaborate on this please? Thanks!

 

[msf]

Hi Alice, here is a list of FODMAP-friendly and unfriendly foods: http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

I avoid the friendly foods that have quantities next to them, and I also avoid all caffeine (including green tea), alcohol and things with a high-resistant starch content, such as recooked Basmati rice (I eat freshly cooked Jasmine rice instead).

This diet changes my condition from not feeling like doing anything to being able to go out everyday, go shopping, clean my house etc (although I still get tired easily).

One thing to be aware of with this diet is getting enough vitamins and minerals - I think things like almond and oat milk are good because they have minerals like magnesium and manganese but don't contain any troublesome insoluble fibre.

If you have any other questions, just ask.

 

[meeKO]

Hi all,
Just as an update; We visited a great Sleep specialist who didn't condescend to us or tell her it's all about sleep hygiene and meditation. He looked at the drug list and listened to us when we were asking for other options to ease off the current load.
So in addition we're working in
-Doxepin to replace Endep
-Valdoxon to replace Melatonin
-Imovane to replace Stillnox
Unfortunately none of these have adequately replaced those drugs or helped to step down on Seroquel.
Her sleep is worse than ever, trouble going to sleep and then waking in the small hours and light sleeping until late morning so no deep sleep.

Worried about dosing up any more really.

So we're going to go back and ask for more advice cos as is she can do next to nothing but lay in bed all day. You need sleep to move at her level of CFS and you need to move while you're awake to help with sleep.

Anyway that's where we're at, Also very interesting stuff about women having insomnia from sleep apnea. The tongue rolls back to prevent air intake and you light sleep. Things to do about that too!

Also he mentioned Belsomra (available to our friends in the USA but not in oz yet but soon...) that sounded like a sleep wonder drug. No tolerance build up etc.

Anyone heard of that?

 

[snowathlete]

This is obviously a complex situation and very difficult. I hope you can figure something out. On the whole, I try to limit the sleep meds I take to the minimum that will work. Around the time I was diagnosed with ME I was basically not sleeping at all, I was in a 24h daze instead. The doctor who diagnosed me also ordered a full sleep study and that meant I got specialist experience to help me with it, I think that's important as we all have slightly different sleep problems and what works for one won't work for someone else.

I was given amitriptyline which worked very well, but over the last two years has stopped working well. I am coming off it now, slowly and will be trying 5htp because my brother (who obviously has similar biology to me) uses it effectively to control his own sleep issues (night terrors) but if that fails to work then I will try to get advise from the same sleep doctor I saw six or so years ago. I think seeing a sleep specialist is much better than a GP who is perhaps more groping around in the dark.

I also got prescribed clonazepam by KDM when I saw him but decided not to take it. Once on it is hard to come off. However, your wife might need to take that sort of choice with something as the lesser of two evils.

 

[geraldt52]

Hi all,
...Also he mentioned Belsomra (available to our friends in the USA but not in oz yet but soon...) that sounded like a sleep wonder drug. No tolerance build up etc. Anyone heard of that?

It's been discussed some here:
http://forums.phoenixrising.me/index.php?threads/fda-approves-new-type-of-sleep-drug-belsomra.31990/

I'm in the middle of doing my own "trial" of Belsomra, and I'll post on that thread when I have more information...hopefully soon. I'm pretty sure at this point that it isn't a sleep wonder drug, but may prove very useful to me. I posted earlier in that thread that I'd be very surprised if Belsomra is going to work for anyone currently dependent on sleep meds like benzos, Ambien, or Lunesta...and my experience with Belsomra so far hasn't changed that opinion.

 

[geraldt52]

...I also got prescribed clonazepam by KDM when I saw him but decided not to take it. Once on it is hard to come off...

I don't know if you'll ever really know how wise and lucky you were in that decision, snowathlete. I got sucked in to Cheney's nonsense about Klonopin being "neuro protective" 20 years ago, and went through absolute hell for years because I did. "It is hard to come off" most definitely doesn't begin to describe what happens when Klonopin stops working...think Michael Jackson, and you'll be closer to the mark.

 

[oceanwild]

I am wondering has anyone take the 5htp to increase the quality of sleeping ?

 

[AaroninOregon]

I am wondering has anyone take the 5htp to increase the quality of sleeping ?

I just started 5htp today, but I took it in the morning, so I have no idea if it will help with tonight's sleep.

I believe that @heapsreal has been successfully using it for some time.

 

[heapsreal]

I just started 5htp today, but I took it in the morning, so I have no idea if it will help with tonight's sleep.

I believe that @heapsreal has been successfully using it for some time.

5htp not currently but use it off and on more for a mood boster and slight energy . Tryptophan though i found helpful for sleep.

 

[meeKO]

Hi @snowathlete ,
Yeah limiting would be ideal but right now she can't get restful sleep even with a large dose of a or a combo of sleep meds. And once up it just gets harder to step down. So feeling kind of trapped. Nothing works for deep sleep any more.

I think seeing a sleep specialist is much better than a GP who is perhaps more groping around in the dark.

Yeah, trying that. Hoping it works...

Thanks for your story. Hope sleep comes more readily for you too.

 

[meeKO]

Hi @geraldt52 ,

I posted earlier in that thread that I'd be very surprised if Belsomra is going to work for anyone currently dependent on sleep meds like benzos, Ambien, or Lunesta...and my experience with Belsomra so far hasn't changed that opinion.

Oh poo.

Well I'd still be interested in your findings. Keep us posted.

I don't know if you'll ever really know how wise and lucky you were in that decision, snowathlete. I got sucked in to Cheney's nonsense about Klonopin being "neuro protective" 20 years ago, and went through absolute hell for years because I did. "It is hard to come off" most definitely doesn't begin to describe what happens when Klonopin stops working...think Michael Jackson, and you'll be closer to the mark.

Yes let's avoid the MJ drugs !