The entire “Living With RLS” blog series was started after my visit with a new doctor to help treat my Restless Legs Syndrome and subsequently my Periodic Limb Movement Disorder (Syndrome). In that appointment, it was revealed that most likely the medication cocktail I was taking each day was most likely now driving the disease as much or more than it was helping me deal with the pain, discomfort, sleepless nights, etc. that the RLS and PLMD(S) had originally been causing. As a result, my doctor wanted me off the medication and back to a drug-free baseline before he was going to move forward with a plan.
The entire process will take 26-days and started two weeks ago. I have been blogging the progress and struggles each day. One of the parts of that “Drug-Tapering Period” that I didn’t mention in other blogs is the following from my doctor’s very specific notes:
“You should slowly taper down on your RLS medication(s) as instructed. Unlike the 10-night, drug-free period, which will follow, the withdrawal period is highly vairable and unpredictable. Each time you decrease your RLS medication, you will experience some degree of withdrawal symptoms (i.e., worsening RLS symptoms). These symptoms could be mild, moderate or severe – especially for the first two nights after each drop in the dose of medication. Each decrease in dose can be a difference experience than the previous dose decrease. However, the most severe symptoms will be experienced when you finally stop the last dose of the RLS medication and begin the 10-night drug-free period.”
That has certainly described my experience so far in the 16-nights leading up to the drug-free period – as you can see in my blog.
However, the last line is the part that is going to be what this blog and another daily-updated blog will focus on: “the most severe symptoms will be experienced when you finally stop the last dose of the RLS medication and being the 10-night drug-free period.” My doctor was clear in his office and in his notes… this part is going to be rough.
Here are in detail what I should expect:
Day 1-2 (first 48 hours): It is guaranteed that for the first 48 hours, you will get absolutely no sleep. During the first 48 hours, the intensity of the symptoms will be at the maximum and will most likely involve the upper extremities and trunk of the body as well as the legs. The intensity of the symptoms will likely be more severe than you had ever experienced before. Walking contiguously will give you the only relief because when you try and rest or even stand still, the symptoms will immediately return with the same intensity. Make sure that the walking space is clear and reasonably well lighted. There should be no effort to work or to drive during this period. Some patients may be prone to developing depression or anxiety at this stage of withdrawal.
Day 3-4 (second 48 hours): During this time, the intensity of the symptoms will only be slightly less severe than the previous 48 hours. This second 48-hour period is the most difficult because you will not have had any sleep for the proceeding 48-hours. Some people will find that they are stumbling when they are walking, so be very careful where you walk. Some people will actually have a brief burst of dreaming with their eyes open and thus experience hallucinations. Make sure that the walking space is clear and reasonably well lighted. There should be no effort to work or drive during this period. You are likely to get only 1-2 hours of sleep, usually occurring in the earlier part of the morning. Day 3-4 is the most critical period, as it is the time when most people give up. Some patients who experience depression or anxiety as part of the withdrawal will report an increase in these symptoms. Getting through the morning of Day 5 is critical, if you wish to get off of this drug.
Day 5-7: During this period, the intensity of the symptoms will start to abate. You should begin to appreciate fewer problems of symptoms in the upper extremities and a reduction in symptoms in the earlier part of the day and afternoon. You can expect to get 2-3 hours of sleep, although the sleep will likely be fragmented. Daytime alertness will have improved, and returning to driving and to work is usually not a problem for the majority of patients; but be prudent in your decision about driving. A few patients may still continue to have a sense of depression or anxiety.
Day 8-10: During this period, most people appreciate that there is a significant lifting of the disease severity in terms of its intensity, body distribution, and effect on sleep. Symptoms will usually regress back to an evening or bedtime problem. The severe intensity of the sensation, which was experienced during the first 4 days, will have significantly subsided. You can expect to get four or more hours of sleep with about 2 to 3 hours of concentrated sleep. Your level of alertness, despite the sleep loss during this time, should be back to baseline. If it is not, then other sleep-related issues may still be present. For most patients, the earlier problems with depression and anxiety have started to abate.
Day 11: After 10 nights without medication, you should contact me (doctor). I will review your current status as far as your symptom severity and duration and will begin an alternative treatment, if necessary.
THAT is what I get to look forward to after 16-days of tapering down my medication.
My doctor suggests I have some projects I want to work on, though I clearly won’t be able to pressure wash my deck at 3am when I can’t sleep! I do have ideas of what projects I may want to work on, but since I may not be able to sit or stand still I am having to be creative. For example, I am hoping to raise my desk/studio set-up to a height that is more conducive to standing.
I am also stocking piling shows on the DVR and other places so if I am just brain dead or need a distraction, I can binge-watch some things. I was also hoping my calf would be better healed (and it may) that I can use our elliptical while watching TV or doing some reading – that’s going to be played by ear.
The other key item is my wife and kids will be out of town at the beginning of this “experience.” That will give me time to myself, not worry about the kids seeing me struggle, have a somewhat clear house to walk around (no toys!!!), and other maybe somewhat subtle ways.
The 10-night, drug-free period starts soon and again, you can follow along with how it is going here: Ten Days to Baseline… or Back to the Drawing Board.