In Through the Out Door

[majoraward]

I just realized that all my correspondence is still available online at the hospital, check out these partial recent notes to doctor:

08/17/12 “Doxepin made RLS unbearable last night…I couldn’t lay down at all without wild jerky movements."
08/30/12 “The Clonazepam that I have been taking for the past week or so has been giving me odd side effects. According to my wife, and now I agree with her, the clonazepam seems to make me angry.”
09/10/12 “Thursday and Friday night I took Temazepam and it had no effect on my sleep….I slept one hour each night."
“Saturday I cut a Neupro patch in half…I slept 8 hours…optimistic Sunday…finally went to bed at 1 am…stayed in bed 20 minutes….So I didn’t get any sleep last night."
09/11/12 “Neupro patch on at 4 pm and went to bed at 11:30 pm, slept for half hour….she said [wife] didn’t even get that much rest because I was moving around the entire time”
09/11/12 “Yes I need new prescription. We threw Mirapex all away.”
09/14/12 “I have slept 8 hours two night[s] in a row using Mirapex!”
09/28/12 “For the past week my sleep has been getting worse….7, 6, 5, to 3 ½ hours last night”
09/28/12 “Maybe more Mirapex would work? I am not sure what to do at this point.”
Doctor, “I am a bit anxious that raising your pramipexole may increase rls”
10/01/12 “Oh yeah, I am driving my wife nuts because I keep buying things (with me being out of work)….I think it may be the Mirapex, she knows it is.”
10/04/12 “I was jolted awake last night at 2 AM by the RLS and was not able to stay in bed….I noticed that there is a Mirapex Extended Release….might keep the Mirapex working at night?”

End of letter clips that I have included here.

10/24/12 I had surgery
11/15/12 I had iron infusion
I had very little problems with RLS for 6 weeks after the surgery (Because of super strong narcotics during surgery and a few days after? Iron infusion?)
12/07/12 I was back to normal and was well rested after having some very good sleep with no symptoms.
12/11/12 I noticed that my sleep was getting bad again.
12/17/12 Restless legs return at night.
12/18/12 Today. I am wondering what tonight will bring.

Look at all the medications I took just within a 6 week period. Sometimes I pretend that the rollercoaster ride is over, but it is never over, this is just the way I live always now and have lived for years.

I noticed just now that this thread started on the last entry I put in on 10/04/12 so it really tells what I was doing 6 weeks prior to finding this site. 08/17/12 was the first time I had written a note in the hospital email system.

[majoraward]

if the Mirapex is turning against me (the little traitor). I won't think it is too funny and probably won't have much of a sense of humor by tomorrow morning if it is a bad night. I guess I am pre-whining but maybe not, it has been mostly a downward slope for 8 days, I just didn't know what was going on until last night. I take enough drugs to sink a battleship, its got to be augmentation.

I was just thinking that if I have a bad night I will know in the middle of the night and I'll take an Ambien, it might allow me to sleep some.

I wrote the above last night and changed my mind at the last moment and also took an Ambien at the same time as my other meds at 8:30 PM. I must have fell asleep at about 9 PM because my last post here was 8:49 PM and I don't remember anything else. I slept in recliner then from 9 to 2 AM or 5 hours! Went to bed and got up at 5 AM or 8 hours total. The Zeo data didn't really work because it went up over my head during the night but the majoraward real feel is that I got some pretty good sleep and it will get me through Friday and then I have a couple of weeks off of work. It will give me time to experiment and get back to work again for the new year.

[Polar Bear]

Isn't it blissful - the feeling of having had some sleep.

[majoraward]

My Zeo ZQ score last night was 28. 2 hours 38 min of sleep with 13 minutes of deep sleep. I got up at 1:40 am. Last night about 7 pm I got wild RLS, wild like having to get up and walk around rapidly while also moving my arms wildly. I took my 8:30 pm meds then and within an hour I was okay. I also got an urge to eat at the same time and went and made a bowl of cereal and ate it while pacing. After awhile I was able to just stand in one place watching the boob tube.

I suppose it makes a little sense that I got up early because I took my meds 1-1/2 hours early, but 3-1/2 hours early getting up? I couldn't sleep and was very restless, and wife was making noises in her sleep which basicly means please shut up lol. Very strange the last few days. My doc is on vacation until I believe the 2nd week of January and his backup, she gave me very bad advice the last time I emailed them and he was out. I'm sort of stuck.

I should be able to go to work since I did have 8 hours of sleep the night before, although as the day wore on I didn't think it was as good of sleep as I had first thought. Thankfully many people will be gone on vacation already and I will be able to just sit and work at computer and put on my ear buds and listen to music all day so I can drown out all the background BS. I live in a cubicle world with a couple of managers behind one of my "walls" that is 6 feet high, so I hear all of their loud talking all day and often they have, at the same time, conference calls with the speakers on . Also I sit right by my lead who is constantly bombarded with phone calls and people coming into cubicle with problems (when he is there because he is often at meetings). Then there are 3 other guys in cubicle who have their own telephone calls and people coming in, and then I also hear everything on the other side of the other wall that has about 6 people over there

I have around a 1,000 songs on my iPhone and 3 or 4 CD backups with music in case I forget my phone (as I did yesterday, also indicating my sleep was not good). I always put the date that I created the CD and I noticed one of them I was listening to yesterday said Summer 2002 lol. Anyway, thank gawd for small favors like portable music. I remember when I was working at an assignment at Lockheed Skunk Works down in Burbank, California that I purchased my first portable player. It was so cool, it was a very small Sony Walkman cassette player, maybe twice the thickness of a cassette. It must have been about 1983 and back then I spent $120.00 on it, which would probably be like $600.00 now. It disappeared when movers moved us a couple of years later Enough of my rambling

[rthom]

God to hear you got slee the night before so your wok will be doable, because 2hrs 38min just won't do. I hope your dr gets back soon i sounds like your sleep is on a roller coaster. If my wife wakes me I can't get back to sleep, so I have to sleep in another bed.

[majoraward]

God to hear you got slee the night before so your wok will be doable, because 2hrs 38min just won't do. I hope your dr gets back soon i sounds like your sleep is on a roller coaster. If my wife wakes me I can't get back to sleep, so I have to sleep in another bed.

I'm home I decided to go to work 2 hours early since I was already up and other employees are there then. I was afraid I would not last the day and only lasted 3 hours before I came home, put in 5 hours sick leave. At least I got a job ready that I have been working on for ages in check. I was so tired I was getting paranoid and grumpy, a bad combination. So before I ended up cussing someone out I left.

Edit:
I forgot to mention I used the snooze alert device that is placed on the ear and it worked. It beeped at me several times on the way home at stop lights.

[majoraward]

I just wrote a note to my sleep doctor via their hospital mail. I know he is out until the middle of January but my wife talked me into writing them anyways. I do not want to spend my whole vacation like this! Two weeks ago I was doing fine and now I am going down hill fast. It could be FAR worse though so I should be counting my blessings, at least I am not having to pace all day and can still sit down and relax. That tells me both the Lyrica and Methadone have to be working or I wouldn't be able to sit here at all.

I wish I could figure this out. If they are working doesn't it have to be the Mirapex that is changing? The other night when I took the full .75 mg of Mirapex I slept longer but it was not a restful sleep and all day long I was a little nausous as though I had hit the limit on taking all 3 drugs as far as the dosage. So .75 mg is too much and .50 mg of Mirapex isn't enough? Maybe I am losing it, my mind, but maybe I should try .625 mg or 2-1/2 tabs of Mirapex? I guess it couldn't hurt at this point. I think that is what I will try tonight and if I can't sleep or wake up early I will take an Ambien - unless a doc gets back to me before this evening and I will see what they have to say.

[debbluebird]

Oh goodness. I'd take the ambien for sure. DEB

[majoraward]

Oh goodness. I'd take the ambien for sure. DEB

I think you're right, that is what I will do. I noticed that the hospital read my email but no one got back to me, figures.

[majoraward]

The doc did get back to me on Friday, he sent prescription for Clonidine, a blood pressure medicine also used for RLS, I searched this site to find that out a lot of good information here. I took it at 8:30 pm along with other pills and fell asleep in recliner. Wife woke me for the second time awhile ago at midnight and went to bed but the Zeo device wasn't working. I am charging it now. At first it flashed red instead of green but then it started flashing green which is correct to charge it. I am afraid I may have destroyed it though I will find out in a few minutes.

This afternoon I went a little crazy and started cleaning the house like mad for many hours. Maybe a little OCD from all the meds? I had gotten some bad news about a family member that was in hospital having tests run for stroke and it freaked me out. I had the vacuum out, one of the old Dyson Animal models and was using the hand deal and vacuumed the headband of the Zeo up - lol - grabbed the end of it as it was going down the hose and saved it. Thought it was okay until I tried to use it a little while ago and it wouldn't turn on at all. So now waiting to see if it will work after charging, although it was fully charged earlier.

Another casualty of RLS/WED I am afraid, or at least the meds I have to take for this disease, it makes me a little strange sometimes. It should be about ready I will go attempt to use it once more...

[majoraward]

The Zeo worked! It was the 2nd lowest score though at a ZQ of 17. REM of 38 minutes and light sleep of 51 minutes, no deep sleep and then up at 2:46 am. I did sleep in recliner awhile so it isn't that bad, but the general trend is correct, I always sleep in recliner before going to bed, and goes like this for ZQ:

58 - 53 - 55 - 53 - 67 - 45 - 23 - 28 - 11 - 17

If you look at the first 5 days and then the last 5 days it shows a definite difference.

56.6 average to 24.8 average or 57/25 or would be 100 to 44 or 44% of the sleep from the week before.

The average ZQ score for my age is 68 for Zeo users (their sleep must suck) but because I sleep in recliner I could probably add 10 to the 57/25 so 67/35. So the first week is about average for the Zeo users my age, but the second is extremely low for anyone but zombies (just checking if you are reading lol).

I took the Clonidine last night too and didn't make a difference. Maybe it takes awhile to work?

Then there is the fact that I am now taking 4 drugs and I feel the restless leg syndrome in my arms at the moment, also I was jerked awake as usual by RLS when meds are not working well.

Edit:
I just sorted my pills for the week, my wife usually does it but I thought I would give it a try, and guess what? I forgot to take all my pills last night so no wonder the Clonidine didn't work, I have never tried it and no wonder I am having RLS symptoms

[debbluebird]

I have a question about the ZEO. Do you have to use it with the I Phone or compatible?
I didn't know that Clonidine works for WED. What is it supposed to do? I only used it for blood pressure. It was fast working for that.
DEB

[majoraward]

I have a question about the ZEO. Do you have to use it with the I Phone or compatible?
I didn't know that Clonidine works for WED. What is it supposed to do? I only used it for blood pressure. It was fast working for that.
DEB

Zeo works with Android smart phones also and has a standalone model for $149 that doesn't need either, it uses a SD memory card. Called Zeo Bedside Sleep Manager.

The doctor just sent the prescription in for me and said it sometimes works for RLS too but that is on top of my Mirapex, Methadone, and Lyrica and if all that doesn't work Ambien also. I am pretty much at the end of the line because I don't think I can handle anymore drugs at the same time. Hope it works!!!

[debbluebird]

Thanks Majoraward

[debbluebird]

I'm wondering how you are. Did the clonidine work?

DEB