A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

For everything and anything else not covered in the other RLS sections.
Polar Bear
Moderator
Posts: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

It is good to hear of someone having sleep - I am finding sleep to be very elusive.
I know this morning I was still awake at 5.45am.

When I got over to sleep I must have made some noise ??? and my husband nudged me.... it was 6.50 am!!
That was me awake for the day.
Was I annoyed at him ........ &^%$%^&**
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Chipmunk
Moderator
Posts: 655
Joined: Thu Mar 03, 2011 10:44 pm
Location: Madison, WI

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Chipmunk »

Oh, that's awful!!

Eefall,
Why doesn't your doctor give you a sleep aid instead of a complicated drug that just happens to have drowsiness as a side effect?
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

Polar Bear wrote:It is good to hear of someone having sleep - I am finding sleep to be very elusive.
I know this morning I was still awake at 5.45am.

When I got over to sleep I must have made some noise ??? and my husband nudged me.... it was 6.50 am!!
That was me awake for the day.
Was I annoyed at him ........ &^%$%^&**


I hate it when that happens since I know they don't wake me on purpose--means I can't in all good conscience snark at them--arhhh :evil: :twisted: :roll:

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

jul2873 wrote:I am so glad that things are at least looking up for your wife.

I do encourage you to try the L-theanine. Last night I went to bed as usual at 11, and was still awake and feeling hyper at midnight. Lately, since I started the kratom, this has been very unusual, but then I remembered that I also started the L-theanine about the same time and had forgotten to take it last night. So I got up and took two 100 mg. pills and was asleep in half an hour. And it's just a supplement--I don't think it can hurt you or react with your other drugs. The L-theanine seems to work on the hyper feeling, and the kratom on the restless symptoms.

Anyway, I do hope your life gets better. This has been so awful for you.


I am working on getting the L-theanine. Thanks!

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Polar Bear wrote:It is good to hear of someone having sleep - I am finding sleep to be very elusive.
I know this morning I was still awake at 5.45am.

When I got over to sleep I must have made some noise ??? and my husband nudged me.... it was 6.50 am!!
That was me awake for the day.
Was I annoyed at him ........ &^%$%^&**


:lol: :lol: :lol: :lolno: Not really funny but it seems to happen. My wife occasionally does that. Today was different by the time I got to bed, got up again, because my right shoulder is very sore, and got a heating pad and everything I don't think I actually got to sleep until 12:30 am or so. Then I missed the alarm and sort of woke up at 4 am and my wife awoke and told me to go back to sleep that I had slept through the alarm and shouldn't be driving to work today.

I ended up waking at 8:30 am! Had to take a fast shower without breakfast or coffee and just made it to dentist. Besides a teeth cleaning I wanted them to look at a sore tooth. I need a new crown and will get one in a few weeks. It is broken, cracked and coming away from my tooth, no wonder sore. Then at 2:30 pm I go to doc for a cortizone shot in the shoulder. Just in time, my wife said I was groaning in my sleep all night.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Chipmunk wrote:Oh, that's awful!!

Eefall,
Why doesn't your doctor give you a sleep aid instead of a complicated drug that just happens to have drowsiness as a side effect?


I also have severe sleep apnea. I use a VPAP instead of CPAP machine because it also takes care of central apnea. Central apnea is really bad because your brain can forget to tell your lungs to breathe. A VPAP knows when this occurs and forces extra air into the lungs and keeps you going. I also have obstructive sleep apnea, my tongue will cut off my windpipe. It happens about every 30 seconds while sleeping without a machine.

Now to answer your question :lol: Sleeping pills make me really really hyper because my subconscious is smart enough to know that if it allows the sleeping pill to kick in it will knock me out and I will die from central sleep apnea. So for me it is a shot of adrenaline non-stop.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

EeFall wrote:But of course life couldn't treat me all that well, somehow it just isn't part of the plan since about 2000 :lol: Tomorrow I go to a dentist appointment, they squeezed me in because I have a toothache, one of those that don't hurt until you bite down with that one tooth and it about launches you out of your seat. I think it will need a root canal. I have had many over the years mostly because of one accident I had when I was about 8 years old. When one throws rocks they are not supposed to bounce off another rock and come back and smack one in the mouth, but alas that did happen and I had my permanent front teeth for only a few months when they were broken off :lol: many of the nearby teeth have gone ballistic over the years from the shock of the rock :lol:

So then after that appointment I go to a doctor who is going to shoot cortisone into my shoulder between the collar bone and the bone I move my are with :lol: My shoulder has become increasingly sore over the last couple of months so I went to see if something is wrong with it the other day. The doc is calling it arthritis but what it is is that there is suppose to be a gap of maybe a 1/4 of an inch between this two bones, I guess there is padding in-between them (I don't know much about it), but the x-rays that he showed me show that it is just 2 bones rubbing together now, there is no padding left. He wants to try the cortisone, he said it might work for 6 months. It will tell him also if it is just that or if something else is going on that they can't see with x-rays. He said he had same problem and had to have one of the bones trimmed down (ouch), so that could eventually happen.

I took twice the amount of Lyrica tonight and I am getting tired. It is almost 11 pm. Hopefully I will be able to sleep. I have to get up at 3:25 am to get to work a couple of hours early so I can at least have some time at work before I spend the rest of the day in the human repair shops :shock:


Okay, I am answering my own post now :think: but I am updating the above.

I went to dentist and was totally wrong :oops: The pain was because of a very old crown is chipped, cracked, and the gum is receding from it exposing the nerve. In 3 weeks I go in for being fitted for a new crown and a temporary, then in two more weeks I go in for the new crown. I have all my original teeth (except for a few pulled molars), it is just that many have crowns (sometimes called caps) and some have had root canals. Breaking my teeth off young meant a lifetime of visiting the dentist for repairing crowns. My upper front teeth are actually white gold which one can see with a mirror looking on the other side and porcelain on the front so they look natural.

I had the first caps for less than a year, they were some new type back then when I was about 9 and I was supposedly the first person to break them in two (they were unbreakable) :lol: as I did a wheelie on my bike (pulled up the front wheel) and the whole wheel came off as it was in the air and I came down with my chin hitting the sidewalk, which would have been bad enough, but it actually hit a crack in the sidewalk where it was sticking up about an inch so it was a little like getting cut with a blade :lol: so I go into the house, bleeding all the way, look in the mirror and see an inch of flesh hanging down below my chin. I still have that scar where I got stitched up under my chin from 49 years ago :lol:

As far as sleeping last night. The Lyrica would have worked but my arm became very sore and I had a miserable night. Ended up staying home, I think I mentioned this on another thread. I went to the doc and he gave me the cortisone shot in the shoulder using a ultrasound machine so he could see where to put the needle between the bones. The most painful part which wasn't bad at all was putting the first needle in with some numbing med. Then he gave me the shot, had me wait for 5 minutes, he looked at it and that was it. The problem is that he called it the honeymoon period. He said about 11 pm tonight (in about 2 hours) the med will wear off in my shoulder and it could be very painful.

He said I shouldn't have any pain within a few days, at the most 2 weeks. If it doesn't go away within 2 weeks then something else is going on and he will do an MRI of my shoulder. He seemed to think it would be okay though, so hopefully he is correct :) I am going to try to get to bed by 10:30 and maybe I can sleep through the time the meds stop working. A guy at work didn't think I would make it to work tomorrow, I hope he is wrong.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

EeFall wrote:
jul2873 wrote:I am so glad that things are at least looking up for your wife.

I do encourage you to try the L-theanine. Last night I went to bed as usual at 11, and was still awake and feeling hyper at midnight. Lately, since I started the kratom, this has been very unusual, but then I remembered that I also started the L-theanine about the same time and had forgotten to take it last night. So I got up and took two 100 mg. pills and was asleep in half an hour. And it's just a supplement--I don't think it can hurt you or react with your other drugs. The L-theanine seems to work on the hyper feeling, and the kratom on the restless symptoms.

Anyway, I do hope your life gets better. This has been so awful for you.


I am working on getting the L-theanine. Thanks!


I ended up ordering some online today and it should be here in 2 days. Rather than caps I got 50 grams of powder. It comes with a measure. How much should one take? I saw that 100 mg is the standard capsule, that there is a 200 mg capsule, and that some online recommended 250 mg a day. Some were taking much more, like 600 mg a day. Since I have caps for kratom I can cap them myself with just about any amount with 000 capsules I have which are very large.

Last weekend I capped about 2,000 kratom capsules that hold about 1.4 grams each. "To infinity and beyond!" (they will last a very long time) :lol:

ps
In the middle of writing this one of our smoke alarms went off. Scared the heck out of me. I hear my wife get up so I figured she would come and investigate too. She thought she just had to go to the restroom and didn't even hear it but I know it must have been what woke her up. She was back to sleep within seconds. :lol: How I wish I could sleep like that. After investigating, the little green light was out, I went out to shed and got a ladder and took it down and replaced the 9 volt battery. It has been 13 months since we bought the place so I suppose it was probably just the cheap battery that was in it. The green light works and the test button works and it is hooked up to house power again also. That is great, I wanted to go to bed at 10:30 pm which was 6 minutes ago, I am so wound up now it will take me an hour to get back to wanting to go to bed.
Last edited by EeFall on Wed Sep 18, 2013 5:38 am, edited 1 time in total.

jul2873
Posts: 401
Joined: Thu Nov 15, 2012 7:32 pm

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by jul2873 »

I take 200 mg. of theanine, which works fine--two capsules. I've found that the powdered kratom works much better for me, not sure why. It works faster (no capsules to disintegrate) and doesn't upset my stomach, which the capsules do, just a little. I also think the powdered may be a little fresher than the capsules, although if you're capping your own, that wouldn't be an issue. I don't buy too much at once, and keep it in the freezer or refrigerator.

I buy a whole lot of those little plastic jello shot cups with lids on Amazon, and then put a half a tsp. in five of them in the evening and add orange juice. It takes about 20 minutes for the powder to be absorbed by the juice; then they are fine to drink. I keep them in the refrigerator, and drink one every 2-4 hours, depending on when I wake up. So far I haven't needed more than five, which is a little under 3 grams total of kratom.

I hope you find something that works for you!

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

jul2873 wrote:I take 200 mg. of theanine, which works fine--two capsules. I've found that the powdered kratom works much better for me, not sure why. It works faster (no capsules to disintegrate) and doesn't upset my stomach, which the capsules do, just a little. I also think the powdered may be a little fresher than the capsules, although if you're capping your own, that wouldn't be an issue. I don't buy too much at once, and keep it in the freezer or refrigerator.

I buy a whole lot of those little plastic jello shot cups with lids on Amazon, and then put a half a tsp. in five of them in the evening and add orange juice. It takes about 20 minutes for the powder to be absorbed by the juice; then they are fine to drink. I keep them in the refrigerator, and drink one every 2-4 hours, depending on when I wake up. So far I haven't needed more than five, which is a little under 3 grams total of kratom.

I hope you find something that works for you!




I purchase the powder by the kilo. It will stay fresh for years if taken care of properly. I use a little capping machine that makes 50 at a time called Cap-M-Quik, just a little plastic contraption. I had another one that did 25 at a time that was a little more clever by putting all 25 capsules together called the Capsule Machine but I found it was easier for me to use this one. I am NEVER going to taste kratom again, I hate the taste and smell of it too. :lol:

Thanks for the info. I will try 200 mg for awhile and see how it works. I will cap up the 50 grams of theanine when it arrives. It should make about 250 capsules of 200 mg. That should last awhile :lol:

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Please see Unrelated Health Issue post, I am at a lost as what is happening or what to do. It is not a WED problem though, at least I can't see how it could be. Thanks.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

The Good News Med Combo

Post by EeFall »

I have been taking the combination of methadone and Lyrica now for a few weeks and I got to thinking about it today and realized that it is probably the best I have ever felt with any combination of drugs and I have used many, many medications by themselves or combinations since 2000.

2.5 mg methadone in morning
2.5 mg methadone at lunch
10 mg methadone at 5:30 pm
100 mg of Lyrica at 5:30 pm

The methadone keeps the RLS/WED away and the Lyrica makes me sleepy (it works to control the hyper-alertness that some people, like me, get from methadone).

Of course this probably wouldn't be working like this if it wasn't for Dr E having me detox off of all of my medications and stop taking all of them for 10 days. Two of the meds are what I am currently taking, only pramipexole (Mirapex) is the one that I no longer take.

Another odd thing about this combination is that with methadone alone I get very itchy and have dry skin and scalp but with the addition of Lyrica I am no longer having that problem. The itchiness is there but almost imperceptible - that is awesome!

I just hope this combination continues to work for a very long time. I feel better (despite some other health issues), I am able to work in an office environment, and I even have energy when I get home. I should have energy because I can easily sleep 6 hours plus a night with this combo.

cornelia

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by cornelia »

I think it is awesome and I appreciate that you let us know from time to time how you are doing.

It will be very interesting to see how long the effects of the drug holiday will last. I hope for a very long time first of all for you but for the rest of us too. Because then we can establish wether it is worthwile to have a 10 day DH or not.

Corrie

Polar Bear
Moderator
Posts: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

EeFall - delighted that your new drug regime is working so well.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

cornelia wrote:I think it is awesome and I appreciate that you let us know from time to time how you are doing.

It will be very interesting to see how long the effects of the drug holiday will last. I hope for a very long time first of all for you but for the rest of us too. Because then we can establish wether it is worthwile to have a 10 day DH or not.

Corrie


The idea of 17 days of lowering the doses of the 3 medications I was taking to nothing and then the 10 days of no medications is brilliant the more I contemplate it. For awhile I had thought that it would have been better to have longer time up front, like a month or 2 instead of 17 days to get off the medications, but I bet it is because of trial and error that they settled on that amount, at least for me.

If for example it was changed to a month then the medications would not have worked for the entire amount of time so I would have suffered for 41 days instead of 27. It must be tricky to figure it out but looking back on it I was at the breaking point at the end of 27 days, I doubt I would have been able to stand it much longer. If I would have failed would I have ever tried again? I will never know but I also bet the doctors have had plenty of failures from patients not being able to go past a certain amount of time to detox. The idea upfront that it would be easier to take more time to do this though is flawed in that I needed all the doses I was getting from all medications, lowerinb any dose and I was having severe RLS symptoms plus symptoms from withdrawing.

I think I have already "won", it is well worth it no matter how long it lasts because I am solidly off of pramipexole (Mirapex) and have absolutely no desire to take it again nor any strange lasting side effects from pramipexole. If I had it to do over again I would have still taken a DA because it worked for so long but I would never have gone through the up and down of it again where I continued to take it after augmenting. There is more to a DA than augmenting I think, somehow it keeps the brain working a little incorrectly somehow, the only example I can think of is when my computer starts to act up and the only thing to do is reboot it. I'm rebooted! :D

Post Reply