When I visited my new doctor at Johns Hopkins in early July I mentioned it was an eye-opening 90 minutes. While the doctor was certainly matter-of-fact about things, he also nailed down by symptoms, problems, challenges, and other things sometimes without hearing them from me first. He seemed to be describing my ailments, frustrations, and discomfort as if he had been my doctor and watching me for years.
One of the most eye-opening and frankly heartbreaking things he said was I had become addicted to my medication.
Before we break down why I had become addicted, let’s get slightly changed most people’s definition and perception of addiction. This isn’t an illegal drug or pain medication type of addiction. Usually in those cases a person gets psychologically addicted to the high of the drugs and needs to get their fix.
This type of addiction is more like one you would see with someone who uses steroids (for many, sometimes legal, reasons) or has to supplement testosterone or other body-made chemicals. Once you introduce those types of chemicals into the body to usually make up for a shortage or low-level of the chemical, the body can usually work in the opposite manner. It sees the levels of steroids, testosterone, or most likely in my case dopamine are back to normal with no effort on it’s part… so it makes even less of the chemical. Then it wonders why there isn’t enough of the chemical, complains (in my case RLS symptoms), the medicine is increased, and the body continues to make less.
Maybe a better way of saying it is my body had become physical dependent on my medication. Or as my doctor put it bluntly, “the drugs are now driving the disease.”
Let’s say my body is not producing enough dopamine as my initial positive reaction has been to drugs like Ropinirole. Every body goes through high and low periods of dopamine during the day and the theory is my low periods add up to lower levels than normal. That drives the RLS. Now medication is added to increase the dopamine and it appears to work. However, the body then senses dopamine is being added elsewhere and makes less of the chemical. I then fall below whatever level it is that drives the RLS and more medication is added and the cycle continues in a circle.
I am no where close to the record amount of Ropinirole in a dosage, which my doctor indicates is 22mg – I’m now at 3mg – but his reaction to what I started at (1mg) and subsequent increases was, “nasty.”
So my body is addicted to the medication I am supplying it because it is no longer making the chemical and relying or depending on another source for the chemical. At the same time, the RLS pain and discomfort were getting worse because of the withdrawals for not having the medicine in time to keep the RLS from starting.
The heartbreaking realization was simple: the medication I was taking that finally had given me relief was in reality making things worse.
I had probably known that deep down, but was so happy to have any kind of relief I wasn’t pay attention at the time.
I noticed a few times after starting my medication the fact I had to get the cocktail right or at least not be late in getting the medication in my body. Early on I was only taking the medicine at night and I waited until 30 minutes before bedtime to take it. That wasn’t a big deal, but eventually my pain and discomfort became more and more problematic earlier in the evening or afternoon. That resulted in more medication and higher dosages along with taking at least Gabapentin in the late afternoon. (A recap of my medication cocktail can be found in an earlier post called “My Fight With Sleep… Gets More Complicated.“)
That earlier timed dosage plus the bedtime cocktail then revealed some other interesting facts:
- I would normally try and take my afternoon medication around 5pm, but if I was even an hour late my RLS would remind me quickly.
- If I didn’t take my afternoon dose before the RLS pain and discomfort started, it would not go away even after taking the medication.
- If I missed just one part of the bedtime cocktail of Ropinirole and Gabapentin, I was in for a very long night. I can’t tell you how many times I either thought I took my medication, but was so tired I didn’t realize I hadn’t… or somehow forgot to take part of the cocktail… or went on a trip and forgot my medication at home.
That last one was the most brutal. I have had on several occasions somehow forgotten my medication at home. There is no worse a feeling than to realize you don’t have any medication to take when you are ready to bed… except the pain and discomfort you are about to feel the rest of the night causing you not to sleep. I have done it on business trips (making the meetings the following day interesting from my point of view) and on family vacations.
What I also didn’t realize I was experiencing was withdrawals. My body wasn’t producing enough of the chemicals I was supplying it and so if I missed a dose my body fought back. THAT is where my physical dependence is similar to addiction because while I wasn’t psychologically being controlled by the medication, withdrawals are still brutal no matter what your body is calling for at the time.
So now comes the toughest part. My new doctor is getting me off my medications so he can reevaluate my RLS. I have already started the process and have been blogging the experience so far. The initial blog will go through the first 16 days/nights of tapering down my medication. There will be a second blog that then covers the ten or so days where I will be drug free and probably dealing with the worse parts of the withdrawal (including days without sleep as I have been warned). Those two blogs will be updated daily if not frequently during the day depending on how things are going.
In the next chapter of my Fight with RLS series, I will chronicle what my doctor has warned me about the ten days I will go drug free coming up and what surprising medication may be on the horizon.