Anyone who suffers through Restless Legs will know how tortuous this can be. Restless legs appear to run in families. Several of my siblings, as well as my daughter suffer from episodes where they are unable to sit still in the evening. Usually they get relief by taking themselves off to bed, and going to sleep. I was able to do this myself for many years. However, at around the age of 40 my leg squirmings stopped allowing me to sleep and I would walk the floor, sometimes for hours into the wee hours of the morning. At the time I had started running. I don’t know if the exacerbation of restless leg episodes was related to the increase in exercise, and as that was around 30 years ago, I’m not likely to find out at this late stage.

I can’t remember exactly when I was prescribed Cabasor in order to start getting some relief from the ‘twitches’ through the night. I think it was around 2002/2003. It was a game changer. Some nights I wouldn’t take it and would get through the night. Other nights, my legs would wake me up twitching and jerking, so I’d get up and take a Cabasor. They seemed to work quickly, and I’d soon be off in the land of nod. They were life-saving! I literally don’t know if life would have been worth living if I’d had to keep suffering the torture of night after night restless legs keeping me awake. For those of you who can’t relate to how torturous this can be – do you ever have wake up with that whole body jerk, well for me that jerk happens in one, or both of my legs, and it wakes me up if I’m asleep. That can and does often happen around 30 – 40 times a minute, every minute of the hour, hour after hour. Sleep is totally impossible, and usually standing up and moving is the only solution. It is torture.

Several years later I was transferred from Cabaser to Sifrol, (Pramipexole), a Dopomine Agonist. Apparently Cabaser was causing heart problems. I didn’t like Sifrol. It worked, but it seemed to take several hours to become effective. This meant I had to take it each and every night about three hours prior to going to bed. I couldn’t wait and see if I was going to need any medication that night as I’d been able to do with Cabaser. I spoke to my specialist about this. He said I could return to Cabaser if I wanted to. This was at least 13 years ago. So for two nights I took a Cabaser, and didn’t take a Sifrol. They were amongst the worst two nights of my life. I lay with my legs up the wall, I ran a cold bath and lay in the bath with my legs up the wall, I did my ironing at 2am, I walked from room to room, I stamped my legs, and put my running shoes and ran around the block in the early of the morning. In desperation I resigned my self to having to take Sifrol, knowing I would have to take it each and every night.

There were warnings about the possibility of addictive behaviours on the packets. I’m not sure if these warnings were there in the beginning, but they’ve certainly been on the packets in later years. The addictive behaviours that seem to be of most concern appears to be the possibility of getting addicted to gambling, overeating, or sexual addiction (Paul always jokes that he lucked out on the last one). Well I’m not addicted to gambling, nor to sex, and over-eating – well I’ve always loved my food, so there’s no way I can blame Dopomine Agonists for being a bit of a tubby. However, I have developed an obsession with real estate. In the past 14 years, since being on Sifrol, at my insistence, we have bought, or/and sold 10 homes. This includes a block of land we intended to build on but never did, as well as a fifth wheeler that we lived in for approximately two years. Now that’s a bit obsessive in anyone’s books, and it’ has cost us a considerable amount of money, there’s no denying that. Whether or not I can attribute any, or all of those real estate moves to my medication – well I guess I’ll never know, but I’m starting to think there is perhaps a connection.

In recent years there also have also been warnings on the packets in relation to Augmentation. Again, I don’t remember if these warnings were there in the early years. My understanding of Augmentation is that the symptoms can start commencing earlier in the day, and can move to other parts of the body. This can, and in my case has happened, resulting in an increase in medication, and having to take my medication much earlier in the day. I went from taking 1 x .25milograms pramipexole at approximately 6pm, to taking 2 x pramipexole at 4pm. I went to a specialist to confirm this was okay only about two years ago. He assured me it wasn’t a huge dose. Over the past year though I have been getting symptoms in my arms as well, plus the symptoms in my legs have been kicking off much earlier, sometimes as early as mid-day. Consequently, I haven’t been getting through the night with two pills, so had started taking a third pill. That’s 3 X .25 mg pills. I didn’t discuss this increase with my GP initially – I just thought it’d be okay after my earlier discussion with a specialist.

Then I started playing Dr Google…… What I read has terrified me. For years I have known there is a connection between iron and restless legs, so have always insisted on having my iron tested. With levels of Ferriten around 40 – 50, my GP has always been happy that my levels aren’t cause for concern. However recent findings suggest that the first treatment for restless legs should now be getting these levels to somewhere between 100 and 200, and preferably in the upper levels of those two. People are now being weaned off Dopomine Agonists, or at least attempts are being made to get them off it. For some, this journey has not been easy, and for some it’s proved to be impossible. It looks like it has to be a very slow journey, and I’m likely to have some days, possibly even weeks, months, or even years that will be amongst the worst in my life. Some people are put onto Opioids (Methadone or similar) as they wean off of DAs. It’s called Dopamine Agonist Withdrawal Syndrome, Or DAWS. I’ve read in some cases that it’s similar to Cocaine Addiction as far as withdrawal is concerned. After the two nights I had in the early days, to say I am terrified is a gross understatement.

I’m not sure, but I think one of the problems that withdrawing from the DAs can be an escalation of addictive behaviours. Goodness, if my real estate journey in recent years is in any related to my medication, if this is a result of addictive behaviour influenced by prescribed drugs, then I could be in big trouble. Our funds are already severely depleted. We could end up homeless, and living in a tent, LOL! (I don’t think that’s going to happen).

I have spoken to my GP, and my journey with DAWS has begun. Before I start reducing the DAs, I am getting my iron levels up. Currently I’m taking 1 Maltofer 370mg Iron pill every second day. At the end of April I’m to have tests to see what my levels are. If they’re not sufficient then I gather an iron infusion will be considered. Also at bedtime I am taking 2 x .25 mg of Pregabline. And I’m still currently taking 2 x .25 mgs of Sifrol. I have delayed taking my Sifrol until around 6.30pm. My evenings aren’t great. I definitely can’t sit and watch TV, or relax with a book. I do jigsaws, or stand in front of Tele doing exercises. Sometimes we play cards, and I stand up, then sit down, then stand again…… I definitely cannot relax. However, at 9pm, the time I usually go to bed, I take the two Pregabalin, and have been manageing to sleep comfortably through the night. I didn’t continue taking the third Sifrol pill, and I have managed to delay the time I take the prescribed dose. I don’t know when I’ll be able to start reducing the quantity, or how quickly my journey off this medication will be. I do know though, that I’m going to get off of Dopomine Agonists. I just hope the Pregabalin that’s part of my journey off of this horrendous prescribed drug, doesn’t prove to be a greater evil.

You know what, I don’t trust any drugs, prescribed, or otherwise. Sometimes I think the prescribed drugs are worse than the illicit drugs. Drug companies have no scruples. They know what they’re producing, they know when the cure is likely to be worse than the cause.