life

DAWS – Day 4 on slight reduction in Dopomine Agonists

| Chris Riley

All going well with fuel supplies (doubtful though that is at the moment with what’s going on in the Middle East), our planned year for 2026 is quite busy. We’re due to fly to Adelaide for a wedding in April. We’ll be leaving on the Tuesday after Easter, and will be in South Australia for eight nights. When we return, it’ll be a little over a month before we leave for our 3 1/2 month road trip up to Darwin to visit our son, and daughter in law.

I’m hoping to have a slightly reduced dose of Dopomine Agonist established, and to have adapted to it, prior to either of those trips.

I’ve been taking my iron pills as per the Doctors recommendations, and have delayed the timing of taking my Dopomine Agonist dose until somewhere between 6pm and 7 pm. When I was taking my dose at 4 pm, by 7pm I was almost always asleep on the sofa. It made me very drowsy. With the delayed dose the restlessness in my legs has started to act up before the medication gets a chance to make me drowsy. Consequently for a couple of hours in the evening, instead of sleeping I have been doing all manner of exercises in front of TV in order to try to alleviate, and to distract my mind from the restlessness in my legs. Whilst this is most likely a bit distracting for Paul, who is trying to happily relax for an hour or two before our 9pm bedtime, it is probably better for me than being zonked out for the 2 – 2 1/2 hours before our bedtime.

I’m due to have my blood tests at the end of April to test my ferritin levels. This will mean I won’t be able to schedule a Doctor’s visit to get the results until at least the end of the first week in May. That’s getting too close to our May departure date for our caravan trip to Darwin. My thoughts have been that if I try a slight reduction too close to our trip, and if I have an adverse reaction that lasts a while, sharing a small caravan is going to me out of the question. In my own home if I have an adverse reaction I can at least take myself off to another bedroom where I can kick, curse, and cry through the worst of it without disturbing Paul.

From everything I’ve read, I don’t have a lot of faith in any of the Medical Profession here in Western Australia to have the nous to know the ins and outs of withdrawing from Dopomine Agonists. Especially so, as they didn’t have the nous to prevent me from getting the stage of addiction that I find myself with. Admittedly they have a lot of things to deal with and to keep up with, and most likely this isn’t an issue at the top of their list. However, it is an issue at the top of my list!

So, I’m setting my own time line for withdrawing from this horrible drug, a timeline that is hopefully going to fit in with our plans for 2026. Accordingly I’ve reduced my dose of Sifrol from 2 x .25 mg pills, to 1 and 3/4 x .25 mg pills. That’s a 1/8 reduction. I had expected to barely feel this slight reduction. Not so. Last night was my fourth night with this slight reduction. I took myself off to another bedroom around midnight last night when I kicked, cursed, and cried for around 3 – 4 hours before finally falling into a near to consistent sleep. I normally wake around 5am and start my day. But today I was so exhausted after such an awful night that I stayed asleep until after 6.30am. That’s a very late morning for me.

I’m hoping I can settle to this slight reduction before we leave for South Australia in just over three weeks. In South Australia I won’t have the luxury of being able to take myself off to another room. It’s bad enough one of us suffering through bad nights, no need for two of us to suffer!

All going well, I’m hoping to be able to reduce down another 1/4 dose when I return from South Australia. If I can do this shortly after our return I’ll have enough time to settle into it before we leave for our caravan road trip, I hope. I wouldn’t contemplate any reduction, no matter how small without having another end of the house to retire to while I settle into it.

That’s providing I settle into the reduced doses. At the moment I’m not through a good time. My nights are tortuous. During the day I’m light headed with lowish blood pressure (around 100 over 55, sometimes a bit higher, sometimes a big lower). I have very little motivation to do much of anything, and am feeling a bit ‘flat’. So that’s how I am after my fourth night with a slight reduction in my Dopomine Agonist dose. Hopefully, I’ll start to settle soon.

(please excuse any errors in this. I have proof read it, but frikken WordPress is so difficult to use these days. No matter what I do I can’t seem to get an entry for my cursor in order to make any corrections. This site is so frustrating to use these days).

My journey withdrawing from Dopomine Agonists begins (DAWS)

| Chris Riley

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.