RLS Pain in BedAs anyone who will read my blogs will soon find out, I am in the process of weaning off of the cocktail of medication that I currently take. The goal is to get me medication free for a period of time before reevaluating my RLS and PLMD(S) and starting a new treatment plan.

I won’t go into the details of the whats and whys and even hows in this particular post – that will come in another post in the near future.

The goal of this post is to somewhat track the weaning off of the medication and the subsequent withdrawal my body will go through. This should end up being small updates over the course of 26 or more days with longer posts supplementing some of the more challenging days. You will find links to other posts throughout.

(Update: this blog will follow the first 16 days and another will follow the ten night, drug-free period of time that will follow.)

For the record: At the height of my medication plan/cocktail, I was taking:

  • 600mg of Gabapentin twice a day (5pm and 11pm)
  • 3mg of Ropinirole once a day (11pm)
  • 100mg of Trazodone at bedtime
  • 15 mg of Flurazepam at bedtime

Due to a decrease in some of my insomnia problems and the side affects of when the drugs wear off, I eventually stopped taking Flurazepam unless I absolutely needed it and Trazadone was cut down to occasional use.

(Edit: This blog is ongoing with updates each day and sometimes multiple times a day. You can find updates at the bottom of this page.)

DAY/NIGHT 1 – JULY 23:

4:25 PM ET: This is the day it all starts and while leading up to this day I figured this was going to be the easiest part… I am suspecting it won’t be. Today I stop taking my nightly dosage of Trazodone (100mg) and my afternoon dosage of Gabapentin, or Neurontin (600mg).

Gabapentin pills
Gabapentin
The Trazodone will be nothing. I haven’t been consistently taking it for quite awhile as it as basically helping be get to sleep (I was diagnosed with anxiety induced insomnia or insomnia induced anxiety – chicken or the egg). However, the Gabapentin (seen at left) has shown over the years since I started taking it in the late afternoon… that if I miss a dosage or I am a couple of hours late… I am in for a long night before bedtime. In fact, I was reminded of that last night as I was a couple of hours late taking the medication (despite an alarm on my phone) and I suffered.

The first difference will be at 5:00 PM my time as my phone will not alert me to take any medication. I am already feeling the discomfort in my legs, though that may be helped right now by an ice pack on my leg for a torn calf I suffered last week playing softball. Later this evening, the pain and discomfort are sure to be worse.

11:00 PM ET: It’s been a bit of a rough night. A different times during the evening and night the discomfort has been pretty tough to deal with. At one point during the night I thought I was comfortable and would make it. I shouldn’t have thought about it. I jinxed it. It was a downhill spiral of pain for the next hour and half to two hours.

The good news: I just took my nighttime dose of my medication cocktail, though if I am struggling tonight to sleep I can’t take any Trazodone. I at least hope the medication tonight provides some relief. Of course the kicker is one of these meds will be eliminated in a few days.

I should also mention, I am taking a low-dose pain killer at night due to torn calf muscle. Not sure if it will help. It won’t matter soon anyway as I will have to be drug free in two weeks.

DAY/NIGHT 2:

12:50 PM ET: It wasn’t the best of sleeps, but I did sleep last night. However, I woke up early and with my limbs bothering me – that’s usually a sign of a poor night and a long day. So far, today is living up to that. I had a morning physical therapy appointment and so far that has been the most relaxing part of my day. The pain and discomfort are pretty intense in my legs especially around my knees for midday when usually I feel nothing. That is a bad sign for later as hardly ever does the pain and discomfort subside unless I take my medication. Of course, I can’t take anything until bedtime… so this could be a tough day. We are headed to the pool this evening and I have found relief sitting in the pool with my entire body. We shall see if that theory holds true today.

3:45 PM ET: It’s been an uncomfortable so far today. I have tried to distract myself with other things like watching Stage 19 of the Tour de France, one of my favorite sporting events, on my DVR. Not much has helped besides walking around – an omen to what I’ve been warned about further along in this process.

In the meantime, I finished another post about my RLS and PLMD. I hope to provide some insight into my struggles. You can read it here.

11:10 PM ET: Rough day and night. My doctor warned that every time a medication is tapered down or gotten rid of completely, I would deal with some withdrawal. Today certainly proved that!

As I indicated earlier, I’ve been feeling the RLS all day. The evening and night have been tough. I did get some relief at the pool. Nothing beats being fully immersed in the water and letting my legs not bear any weight. I don’t feel the RLS. I stayed in the water as long as I could. The moment I got in the car and wasn’t moving… it came roaring back. I struggled just to drive home. Then at home I never was able to sit. Eventually, my wife insisted we take a late night walk around the neighborhood.

All of that was just to get me to my nighttime medication doses. Now I patiently wait for them to kick in. And as I wait I am reminded that in a couple of nights, one of those meds is removed and in two weeks there will be nothing. This is going to be tough.

DAY/NIGHT 3:

9:30 AM ET: Woke up early again this morning after going to be semi-early. I got pretty drowsy around midnight which hardly ever happens. I don’t know if it was because of a late walk, the camomile tea my wife made me, the medication hitting me, or any combination of all of those factors, but I was asleep before 1 am for the first time in a long time. I also finally had relief from the pain and discomfort in my legs which was so welcome.

That relief was seemingly short-lived. I woke earlier than everyone in my family, which is saying something, this morning thanks to the return of the pain and discomfort. I tried all kinds of tricks to try and fall back to sleep to not much success. It’s not like any of these tricks have really worked in the past, but sometimes psychologically I can sometimes trick myself.

Now, I see a day full of discomfort. I am already turning down an early trip to the pool. Despite the fact the water gives me relief, I am not feeling like heading out. It’s a Catch 22. I may head out this afternoon if need be. What I could really use is a hot tub/whirlpool… but we can’t have it all!

11:30 PM ET: Long day. I didn’t have much motivation or energy. Stayed home the entire day, though I went outside a few times. I struggled with discomfort all day. There were small moment of relief though I was predictably on my feet. I can’t even sit for a few minutes before I have to get up.

I took my nighttime dose – the last of the cocktail as it gets changed tomorrow night – 45 minutes ago and not much relief, yet. Hoping the camomile tea helps because if it does then two nights in a row it made a difference.

Tomorrow is a new day… though I am fearful about tomorrow night.

DAY/NIGHT 4:

10:30 AM ET: Another early wake up call from my body this morning. I’m starting to sound like a broken record. My RLS simply won’t let me sleep in the mornings and I am waking before 7 or 8 each morning so far. It’s kind of cruel. I already know this tapering off and eventual ten day drug-free period will result in struggling to fall asleep (let alone being able to just lie down), so to have my body already waking me up early is … cruel.

Today marks another day/night where I adjust my meds. I have gone through the first change on Thursday when my afternoon dose of Gabapentin was eliminated as was my bedtime dose of Trazodone. Tonight I will have to eliminate the other dose of Gabapentin leaving me just on Ropinirole. Considering how much my body has already been struggling in the opening four days, tonight could be interesting. As difficult as the days and evenings have been, the medication cocktail at night has at least allowed my legs to calm down and for me to fall asleep. We shall see if that will continue tonight.

I am sure people reading this blog wonder how this entire process should play out. While this blog post is giving you an idea of what I am going through each day and night, I do have information from my doctor as to what to expect. I will out that together as another blog post in the next 24 hours and post a link here when it’s available.

Plans for today… maybe a few projects around the house – as long as the discomfort and torn calf allow – and a trip to the pool where I hope I can spend most of our time there in the water for some relief from the discomfort.

SleeplessDAY/NIGHT 5:

12:20 PM ET: I didn’t get around to posting much else yesterday as it was a weird day. I once again had a tough day, but tried to remain a bit more active thanks to the fact I didn’t feel as rundown as the day before. That certainly made the day feel like it went better. However, as the day wore on, the RLS pain and discomfort continued to ratchet up and with a calf muscle I had clearly overworked in the days prior… it was a bit draining by dinner time.

Of course, during the evening and early night I wasn’t comfortable. I couldn’t sit or lie down for more than a few minutes before I had to get up and move. The biggest concern was going to be at night when I eliminated the Gabapentin dose of medicine and went with just the Ropinirole shortly before bedtime. I was pleasantly surprised when about 45 minutes later I was dosing off in chair… but that was short lived.

I woke around 3am thanks to either a thunderstorm moving through or my body “waking up.” I didn’t necessarily have the the pain and discomfort. I know I didn’t feel comfortable nor could I get myself into a relaxing position in bed. I tried a few tricks and I think I caught a few cat naps before 6am rolled along and things went downhill fast. The pain and discomfort came roaring back and for the next two to three hours I did everything I could and pulled out almost every “trick” I used to try to get myself back to sleep. I know I had a dream in these three hours, but I am not sure how much I actually slept.

As a result, today is miserable. I am thoroughly exhausted and the discomfort is ever present. My body aches and I am struggling to stay motivated. It doesn’t help that the day seems to be dragging on.

The real challenge is staying positive. I know it was going to be hard to taper down the medication when I started, but I figured the toughest days would be the ten where I was completely drug free. I am less than a week into a 26-day process and I am struggling with the withdrawals the medication has created. How in the world am I supposed to make it through the next 15 nights before I start the ten days/nights of no drugs what so ever?! Five days has already felt like weeks. I can see why people give up on this and go back to the medication.

I have an important meeting and then possibly a family movie-trip this afternoon… need to do what I do best at least for the meeting and not let people see how much I am suffering.

DAY/NIGHT 6:

Husband Pillow
Husband Pillow
11:00 AM ET: Yesterday went better than expected. The pain and discomfort were still there as they are today, but several things had me a bit distracted which certainly helped. I have also gotten used to basically standing from some point in the late afternoon until I go to bed. I get chances to sit or lie down briefly in that time frame, but know that within minutes I need to get back up. I have also set-up a sitting/lying down area on the floor using some pillows and a husband pillow (pictured left) since that is the most comfortable position I can find for temporarily relief off my legs.

All in all it allows me to spend time watching TV with my wife despite the fact my feet and legs certainly get worn out.

I will say I am walking around a bit more and as I sit here typing this I am forced to constantly move my legs around. I wouldn’t say I am getting used to it, but I am not as frustrated – at least today.

Last night also went better than expected. Thanks to my one dose of Ropinirole and a cup of chamomile tea I was able to get drowsy and fall asleep around 12:30 AM. And unlike the first night without any Gabapentin when I woke up at 3am… I was able to sleep until 6am this morning. Of course, my body woke me and I wasn’t able to get more than uncomfortable cat naps the rest of the morning.

My wife has warned me, justifiably, that she may move to the couch if my sleeplessness is too much for her and disrupting her sleep. That will at least make sure one of us is sleeping!

Pramipexole
Pramipexole
Tonight is my last dose of Ropinirole before I switched to another medication called Pramipexole. Apparently it is easier to wean off the Pramipexole than the Ropinirole, though I will stop taking the Ropinirole immediately. The Pramipexole will be slowly weaned off over the course nine days.

DAY/NIGHT 7:

3:00 PM ET: A week into the process and I at least know what to expect… for now. I had another decent night where I got to sleep without much hassle (though at 1am – later than I wanted) and seemed to sleep for a good chunk of the night. Of course, 6am arrived and my body woke me up once again in discomfort. I don’t know why I try to go back to sleep… but I do – maybe because I am tired. Didn’t matter… pretty much tossed and turned for the next two or so hours.

Today is going along much like the last few. At different times during the day my body isn’t comfortable and I am dealing with the pain of RLS. As the day wears on, those periods of discomfort get more and more frequent and more and more intense. By the late afternoon and early evenings, I am on my feet for the rest of the night – 6 to 8 hours worth – with occasional and very brief moments to sit or lie down.

Tonight, I switch medications to Pramipexole. I am going from 3mg of Ropinirole to .50mg of Pramipexole and then will start the nine night process of lowering the dose until I am no longer taking it. In other words, I start what I see as the second round of withdrawals and such in the next 24 or so hours – I just don’t know how I will respond to the change in medication tonight.

I did make a comment to my physical therapist this morning (the calf is responding and healing well it appears) that it’s a good thing I see him in the mornings. I am not quite sure if afternoon appointments would allow me to lie on the table and let him work without being extremely uncomfortable. I also know that the week I am completely drug free will be one he’s on vacation for… so the timing appears to be perfect for that!

11:45 PM ET: What an interesting night. I switched to the Pramipexole tonight. One big difference is that I have to take it at 8pm versus 11pm as it was for the Ropinirole. I have been in such a habit with the late night dose that despite knowing the medicine was changing the reminder alert on my phone still surprised me.

So I took my medicine, talked with my parents, helped put the kids in bed, and then settled in for what I was pretty sure would be another night on my feet dealing with the new, old reality of pain and discomfort that came with the withdrawals. Except it didn’t happen. I lay down on the floor and moved a handful of times.

I never stood. I was comfortable.

Oh, what a relief!

I kept waiting for the shoe to drop. I was sure at some point I would be back in my feet in agony. It never happened.

So here I am closing in on midnight figuring I might as well go to bed. But before I go, here are the questions I have on my mind after such a change of course:

  • Does this mean I will sleep a bit more tonight?
  • I’ve been tired and yawning all night, is that because the meds are helping or have three or so ugh to of some sleep depervation finally getting to me?
  • Is this nice evening going to be repeated at least for a few nights (before the new medicine starts being tapered down)?

Whatever the case and if this is only temporary (I’m not staying on this medicine for very long!), at least I’m getting a brief break at night from 26 days of withdrawals.

Goodnight. We shall see what tomorrow brings.

 DAY/NIGHT 8:

10:30 AM ET: Wow. Sleep. I think.

The switch to the new medicine was interesting. As I said in last night’s update, I already noticed a more relaxing and comfortable evening. But when I went to bed I actually got some sleep, I think.

Here’s the catch: I know I woke a few times during the night (which has been standard operating procedure for a long time) and this morning my body ached – usually a sign of an interesting night. However, I also felt semi rested.

The other bonus, the first time I saw the clock (though, I try not to look at it as much as possible) was after 7am and I wasn’t really awake until 8am. It seems the new medicine has a 12-hour life. What a difference compared to the past few days of waking at or before 6am!

So, I’m on to a full week since starting this process and it appears I may be in for a few days and nights of relief. We shall see how the body reacts during the day today, but I think I might actually enjoy my night.

5:45 PM ET: I tried to get things accomplished today, but I’ve also been fighting being tired. While last night appeared to be a good night, I suspect while I didn’t experience any conscious toss and turning… I was probably still moving quite a bit and not getting any deep sleep. That coupled with a few nights earlier in the week of little sleep and I’m exhausted.

I am also probably tired because of my injured leg. I took a bit of a step back with that today as twice I experienced the calf clearly put to its limits and produce some extruishiating pain. Of course, I was out doing errands and walking around a lot, so that didn’t help my exhaustion. I should also mention my absentmindedness or short-term memory issues usually associated with my lack of sleep caused me to do some extra walking around probably contributing to being even more tired.

And throughout the day my RLS pain and discomfort, or medication withdrawals, slowly intensified. Luckily it left me alone for the st part while I was driving, but as I sit here writing this I am not comfortable. All I tell myself is I need to wait two more hours before I can take tonight’s medication. I just need to deal with it a little longer.

Of course being tired, I want to sit or lie down and relax… but I can’t be comfortable.

 DAY/NIGHT 9:

9:30 AM ET: I couldn’t really expect two nights of decent sleep on a row, could I? LOL

I actually went to bed early, in my world, arriving in my bedroom at midnight last night. I had already dosed off on the floor downstairs and would once again dose off in bed while watching a Jimmy Fallon episode. But that would be the story of the night. While it wasn’t restless with no sleep, it was an inconsistent night and I remember waking a number of times. My wife asked me this morning how I felt I slept and I indicated, “eh.” She promptly concurred meaning I was certainly moving around a lot and not actually resting. I actually woke again at 6am, though I was able to get some sleep after that point this morning.

That being said, the new medicine certainly allows my evenings to be more comfortable right now. It clearly is more affective than the Ropinirole which I took 3mg and it seemed to last a shorter period of time. I’m taking .50 mg of Pramipexole and it seems to last 12 hours. I also know I’m taking a big dose as a relative of mine shared the fact they are taking just a quarter of the same amount of medicine at night.

Of course this is all short term. Starting tomorrow night I taper down the medication and week from today I will completely off the medication. My brief periods of comfort will probably come to a close soon.

3:05 PM ET: I’m tired and my pain and discomfort is certainly back. I was hoping maybe I could get to Sunday before I would really be back in discomfort, but I also realized the last 24-36 hours of “relief” were going to be fleeting anyway.

Yesterday, I don’t think I was in this much discomfort but I was also walking around and doing errands during the afternoon. Today, I did much of that in the morning including physical therapy which has left me not as comfortable now.

I am currently sitting at my desk trying to get some small projects done or at least underway while constantly moving my legs to try and lessen the pain. It really isn’t working.

For those wondering, Advil, Tylenol, Aleve, etc. don’t help the pain and discomfort. I have been trying them for a very long time to no avail – probably another sign that was missed in the earlier years. I actually took quite a bit of Advil a few hours ago post-physical therapy since my injured calf has been a bit bothersome the last 36 hours… but you honestly won’t know the difference right now. The only saving grace for the RLS medication withdrawals is that I can’t feel the occasional twinge of pain or muscle spasm in my calf nearly as much (that’s how high the RLS pain and discomfort ranks).

One would assume I will get a break tonight when I get to take another dose of Pramipexole, though it will be my last “full” dose of .50 mg. I start cutting back tomorrow night.

11:05 PM ET: Not one of the more enjoyable evenings at least after two comfortable ones. Just couldn’t shake the pain and discomfort tonight. I never got comfortable. It certainly wasn’t as bad as earlier in the week, but it also wasn’t fun.

And as I lie here, I get these uncontrolled, slight twitches in my toes. I usually take that as a sign of my RLS really acting up.

Not sure what to make for the rest of the night, but I enjoyed a cup of chamomile tea and hope my body gives me a break tonight. I have a feeling starting tomorrow things we start getting really tough, again. After all, a week from tonight will be my first drug-free night in six-some-odd years… scary proposition.

DAY/NIGHT 10:

12:00 PM ET: I slept in. Wait, what?! I slept in?! Let’s start with “slept” and then go from there! What a weird night.

As you can tell from my previous post, it was rough last night. It certainly wasn’t as bad as other nights, but it wasn’t easy. It continued after I went to bed where I struggled to go to sleep. I pretty much figured this was going to be the first of many tough nights.

After I finally fell asleep, here’s what I remember the rest of the way:

  • I woke up several times.
  • I remember seeing the early morning light and figured it was around 6am and would be done sleeping.
  • I remember seeing the clock at 9am and knew the wife and kids were downstairs.
  • I had a pretty intense (felt like I was living it) dream.
  • Family woke me at 10:30!

I haven’t slept in for weeks. Whether it was obligations or the tapering, the last time I slept in was also not this late in the morning!

I’m not complaining as I could use the rest these days, but I have to keep my head in the game and understand this most likely will be the last good nights sleep in awhile… unless I get another surprise tonight!

The only drawback to sleeping in… I don’t feel really rested. This is usually the problem with RLS. I sleep for a long time, but I didn’t sleep a long time.

1:30 AM ET: Well… I’m up.

I didn’t feel great all day. I even lay down for an hour in the afternoon. While I didn’t take a nap (I never take a nap), I did close my eyes. I just didn’t feel 100% today. My stomach has also been rough the second half of the day. There are a half a dozen reasons for that I figure.

Spent a good chunk of the day at the pool with friends. Occasional discomfort throughout the day especially as it got later. I actually indicated to the wife at point I needed to go home.

Tonight was the first night of a lower dose of Pramipexole (approx. .375 mg). I don’t have a lot of discomfort and pain, but I am not comfortable and I can’t sleep.

Not sure what to expect. I wonder if the withdrawals from the Gabapentin are done, but I haven’t dealt with the other medication yet. Here’s hoping I get some sleep. I wouldn’t mind some sleep now to get me ready for what sounds like very little if any sleep in less than a week.

DAY/NIGHT 11:

10:20 AM ET: Lousy night. I didn’t get much sleep.

I was up until at least 2:30am, if not later, before I know I fell asleep for a little bit. But I was back up by 5:30am. During that I time I just have experienced a little bit of REM sleep because I remember having a dream, but once I was back up I didn’t really get back to sleep again.

Of course when I was up I was also visiting the bathroom as my stomach was bothering me all night. I remember sitting at 5:30 wishing I didn’t wake too much so I could get back to sleep, maybe. Then I realized there was no chance that wa going to happen, because my body had woken me… not the trip to the bathroom.

I returned to bed and never got comfortable. I just couldn’t do it. I finally gave up at 8:30 and came downstairs – practically sleep walking.

That’s the kicker with all of this. When I have struggled in the past with sleep, my body would give up and I would get a little bit of sleep and get up mid to late morning. That isn’t happening these days. I’m waking up earlier than my entire family; something that never happens on purpose!

Now I just hope to pace myself through the day and see what happens again tonight. My legs are already giving me problems. Apparently, I’m not going to be able to get any relaxation today or this morning. Maybe a sign of my experiences starting next weekend.

9:30 PM ET: Tough day. Kind of expected that after last night.

For starters, it took about half the day for my stomach to feel better. But being tiered didn’t help, anyway. One thing I have learned over the years… if I had a bad nights sleep… I most likely will be in discomfort all day. In other words, when I am tired my pain and discomfort are exasperated. Today was no exception.

I did make a point of sitting in the pool today. We went to our pool and I spent probably two hours in a couple of the pools. It allowed me to let my legs relax and when I’m in the pool with no pressure on my legs, the pain and discomfort disappear. That is short lived. We didn’t get halfway home before I was once again uncomfortable.

I haven’t really been able to sit or lie down all day. When I do sit or lie down, I am constantly moving.

I took my only dose of medication at 8pm… hasn’t really made a ton of difference. It seems to have quelled the discomfort slightly… but I can’t stay in one position very long before I have to move.

I’m honestly just hoping I can get some sleep tonight. It turns out I didn’t sleep as much as I thought last night. I thought I slept between about 2:30 and 5:30… but my wife saw me up at 3:30 – shows you how much I try and ignore my clock.

DAY/NIGHT 12:

10:15 AM ET: Another crappy night.

I really don’t know how much I slept, or didn’t sleep. It was rough all night long. I never got a chunk of sleep and I don’t think I dreamt, but it’s also possible. The entire night was nothing but tossing and turning along with getting up to try and give my body a break. I know I was moving around a lot even when I had dozed off because at one point I woke to find my wife had left the bed for the downstairs couch – I didn’t see her leave, so I clearly was at least semi asleep.

She and I had agreed at the beginning of all this that if I have a rough night and she can’t take the tossing and turning, she would go downstairs. She wanted me to understand I was not to feel bad. I’m already on edge about all of this and she needs to get her sleep, so I am not taking it personally.

Of course, I might not make it to the bedroom in the near future. The challenge there is sometimes the most comfortable, and cooling, place to be is the bedroom. I have at least a reasonable chance of being comfortable there versus any where else. However, if I’m not going to sleep… what’s the point in being there.

The real mental challenge now is this: the doctor says I won’t sleep once Friday night comes along (five nights from now). However, I’m barely sleeping now! Am I going to get any reasonable sleep before now and then? I need one or two okay nights in the next five or Friday night and beyond is going to be even tougher.

At the same time, I’m dealing with occasional sweating on top of the pain and discomfort. It’s just piling on at this point!

11:11 PM ET: I figured I would post an update at this particular time looking for some sleep luck.

I tried to just remain busy today. I couldn’t sit or lie down for long today – I even tried to get a nap during the afternoon … that attempt lasted ten minutes before I gave up. So I did something hints around the house, though I certainly didn’t have a lot of energy or mental focus. It was good to get some things done, but annoying how tired and how much discomfort I was in.

My wife and others keep reminding me two weeks from today it’s all over… in theory. Two weeks from today I callmydoctor and hopefully there is some kind of relief if it’s needed. It feels like months away right now.

Anyway, back to tonight… I am kind of hoping I am so tired from the lack of sleep that I get some decent rest/sleep tonight. I suspect it won’t happen tomorrow night as I reduce the amount of medication again which is bound to lead to a rough night.

DAY/NIGHT 13:

11:55 AM ET: What a weird night, apparently.

I didn’t feel like I slept well. The fact my wife left for the downstairs couch for the second night in a row was confirmation of that. I also felt like I saw the clock at regular intervals and I noticed I was tossing and turning all night was another big indication. But it is the things I didn’t notice or remember that makes the night weird.

My wife says she went downstairs around 2am when I was tossing and turning too much. I had turned off the TV and tried to go to sleep about an hour prior and if I was tossing and turning that badly you would have thought I was awake. However, I have no recollection of her leaving.

I also have a gap of time I didn’t see the clock… so that certainly indicates I may have gotten some sleep. However, I also remember multiple times shifting my pillow(s), getting the sheets back on me (they were all over the place), and getting up to go to the bathroom (to give myself something to do) all night long.

LightningThen there is the big miss: a major thunderstorm. When I finally gave up on trying to get some sleep, I grabbed my phone which had its “Do Not Disturb” setting on for another night (no point in ticking me off with alerts and such when I am not sleeping). I found a number of weather alerts indicating a major storm was moving into the area. Turns out… it was a huge storm. One lightning strike and clap of thunder was close enough to the house to rattle the windows and wake our son who was sound to sleep. I … didn’t … hear … a thing. Not one memory of it. I remember the clock prior to the storm and I remember seeing the clock apparently after the storm. In between: nothing.

So strange!

I am also feeling a bit more rested today, though I don’t feel like I got a lot of sleep. Just strange. And that feeling and night has given me the idea for my next blog post in the “Living With RLS” series which I will post later today (update: now posted – “My Fight With Sleep… Has Been Weird“).

Speaking of later… tonight I once again lower the dose of Pramipexole to just one tablet: .25 mg. This is the last change in dosage before I am completely off medication on Friday night. I suspect tonight will be another rough night in, or out, of bed.

4:25 PM ET: The day has gone surprisingly well. I feared I wouldn’t be able to stay lying down at my physical therapy appointment (for my injured calf) nor would I be able to sit down and get any work done in the office. Both have gone well.

Physical therapy was comfortable and even had walking on a treadmill added to the rotation – allowing me to move my legs, obviously.

Working in the office has gone okay, though as the day wore on the RLS pain and discomfort certainly made its presence known. I had to get up several times to alleviate everything.

I did get a chance to write a new blog post and prep a post per the 10-night, drug free phase. Now I plan to get a few other items done in the office and around the house before I need to take a break.

I am sure there will be another update tonight before I try and get some sleep.

DAY/NIGHT 15:

9:25 AM ET: I’m going to sound like a broken record, but it was another lousy night. However, because I took a lower dose of medicine… the night was really tough.

I have no idea how much sleep I may or may not have gotten. I was focused more on the fact I couldn’t get comfortable. I’m pretty sure I drifted off finally in the predawn hours of the morning… but it was pretty annoying leading up to that point. I also didn’t stay asleep very long before my body woke me once again.

It was a really long night.

And so I am now on my last level of medication dosage before I am off all medication completely. I have two more nights of medicine before the 16-day tapering period is over and the 10-day, drug-free period.

In the meantime this morning, I still can’t get comfortable sitting or lying down… and I so badly want to relax. I am also pretty groggy. But something I forgot until recently is how much the pain and discomfort clouds things. It’s almost like your vision gets more tunnel like or the peripheral area is just blurry. It is really hard to focus on things … and I’m not even in the phase my doctor says will be the toughest. I have more on that in a separate blog post tomorrow.

 7:50 PM ET: It’s been a day. I’ve been tired, understandably, all day. It took me sometime to get things going this morning and decided to just head out the door with the kids for some random errands just to get moving. Of course, walkingaroundwith a healing calf wear some out, too!

Anyway, good to spend time with the kids who behaved themselves well making it easier.

Kept myself busy the rest of the day including helping the wife and kids get out the door as they head out of town for a few days (I’m staying home for obvious reasons). And once again, I can barely sit or lie down before my legs start acting up. I have never experienced this consistent and quick triggered pain and discomfort during aloof this… pretty much proving how the medication can drive this disease.

Not sure what to expect tonight. So far, the night following a medication dose change is as rough, if not rougher, than the previous night. I do now have the house to myself,Mao I don’t have to worry about disturbing anyone. The thing is I just want to get some sleep or at least be able to lie down for a little while without discomfort… but I think that horse is out of the barn for the next twelve nights.

Now to take my medication and maybe get a little relief.

DAY/NIGHT 16:

7:15 AM ET: Another crappy night. Really crappy.

I know I caught some cat naps which meant I got a little bit of sleep, but it also felt like I was up most of the night. I was also tossing and turning a TON! I have an entire king-sized bed to myself now and I was all over it. The sheets and blankets were getting kicked clean off the bed multiple times.

I finally decided to give up trying to get any meaningful rest before 7am. I am lying in the couch downstairs just hoping I can stay comfortable at the very least. We shall see how the rest of the day goes.

10:15 PM ET: Odd day. I had a few things I needed to do, but I had trouble staying motivated. It’s also amazing how much work I do while sitting a desk – something this entire process has made very difficult to do for long periods of time.

I’m also struggling a little with my memory… thanks to the sleep derivation. I can’t tell you how many times I forget why I was walking into a room or can’t find something I just put down. I’m laughing about it, but it’s also driving me a little crazy.

Now to tonight… I need to sleep. I really need to sleep. I realize I’m not going to get eight hours, but I need to have a semi-easy night. I need just this night to be a somewhat comfortable one. That’s because starting Friday night, I am probably not going to sleep for two to five days. In the next ten nights… I’m not going to have a decent nights sleep. Period. I just need some tonight, so I can start the next phrase at least on a positive note.

head in handsDAY/NIGHT 17:

12:00 PM ET: The end of the first phase of my 26-day tapering and weaning to get back to a drug-free baseline has arrived. Last night was my last with medication, though at one point I thought I hadn’t taken it. Around 1:30 last night I didn’t feel tired and was comfortable lying in bed. I was standing around in my bedroom watching TV thinking maybe, maybe I had screwed up on my last night with medication… and forgot to take it!

A little while later, I was drowsy enough to attempt lying down… but I simply couldn’t get comfortable. I may have caught quick little naps – a few minutes here and there – but I was still pretty aware of my surroundings at 4 or 4:30. From there, I know I slept more until 8:30 rolled around. I can’t say I slept the entire time as I remember getting up (though hazy) a few times… but at least I got a little bit of sleep.

Now I transition into the ten-day, drug-free period of this process. I have written what to expect in that phase here (“Ten Nights RLS Drug-Free: What to Expect”). I will also end this blogging page and transition into a new one that will chronicle the next ten or so days accordingly.

I am switching blogs because a) this has gotten pretty long and ten more days will make it epically long and b) I suspect I will be updating more often with short blurbs about how things are going since, as my “What to Expect” post indicates, I may be spending quite a few nights and days in the coming week without a single minute of sleep. You can follow that blog here: Ten Days to Baseline… or Back to the Drawing Board.

I hope you have enjoyed or at least been interested in these updates. Feel free to share your thoughts in the comments section here or on other blog posts.

Thanks!

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