Introduction and looking for feedback

[toronto-beach]

Hello everyone. Like many here, I've had Restless Legs Syndrome for a long time. I was diagnosed in 2003 after a sleep study, but suspect I had it many years before being diagnosed. RLS was the first medication I was ever prescribed and it completely changed my life. I really don't know who I would be today without it. I've been on Mirapex or Pramipexole ever since.

But I've been wondering about something my physician asked me at a recent visit: "Have you had any addictive tendencies like compulsive behavior as a side effect of being on this medication?" At first I said "No, of course not", but the question has been nagging at me. I've been on this medication for so long, that I don't really remember what life was like before I started it. I certainly know what life is like when I forget to take it, because my wife has to sleep in another room. She will often remind me in the evenings (we call it my "kick pill"). 😆

But this thought about addictive tendencies keeps coming back up. Since I was diagnosed in 2003, I've been diagnosed with clinical depression. At that time I was depressed, but I've stayed on the anti-depressant medication not because I'm sad or depressed in the traditional sense, but because I find that I'm too "irritable". I lose my temper and find that I have more severe reactions to minor inconveniences. I've tried weening off of this over the years, but a low dose does help me not to overthink situations, and it generally allows me to control what comes out of my mouth before I blurt out what I'm thinking.

Probably ten years after I was diagnosed with depression, I started looking into ADHD and was eventually diagnosed with that as well. This is helpful to an extent. Simply knowing that I have ADHD helps me understand how my brain works, more so than I think the medication helps; though I will say that Concerta does help me to focus on my desk work.

I've seen a psychologist on a regular basis over the years and always find it helpful, even when things aren't falling apart. We think of therapy like "putting money in the bank: you don't want to have to make a major withdrawal right when your funds are low", and seeing a therapist on a regular basis helps me to address all of the normal issues that life brings about.

And now I'm getting back to my original reason for being here. Over the years, I've talked with therapists about my addictions and interests; I've always said that "my hobby is 'hobbies'". When I find something interesting, I just go all in and obsess over it. But the one thing that has remained out of my control for the past 20 years is my addiction to the internet.

I'll preface that with a caveat that I don't always feel "out of control" - I work with the internet and use it regularly - but there are certainly times I can recall looking back over the years where I would OBSESSIVELY be looking up something online, even without really knowing WHY I needed to know about it. I recall working at a job around 2004 where I was looking at houses on another continent because I felt like it was super important to have the option of buying a house overseas (I didn't even own a home of my own at the time). And I remember the days where I had a position where I had an office at two locations and would strategically go in between the two and would go home on the way and have some other thing I was absolutely obsessed with that I was reading about on the internet.

I've always justified it as a love for learning, but the more I think about the possible side effect of Mirapex, and the timing of it, I can honestly say that the intensity seemed to really grow after I started on Mirapex all those years ago. To be fair though, I remember obsessing about other things before being on it, so I can't really say for sure. But this past week I took off a couple of days from work and literally spent the time lying in bed on my phone on social media (not posting, just reading and watching videos). I didn't tell my family that I didn't go into work, and since I work from home it looked like everything was normal, but I didn't even tell my manager until he reached out to me after I was gone for a day and a half. That isn't normal for me, but if I'm honest, it isn't abnormal for me to call in sick and lay in bed and just surf Reddit or YouTube or Instagram or TikTok.

I think I've not been fully honest with my therapists about my internet addiction, or rather, maybe wasn't fully honest with myself about what it really is. But I'm in the process now of trying to ween down the Mirapex just a little bit to see if I notice any difference.

I'd be really curious to hear anyone else's thoughts on this.

Thanks, and Hello!

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Mirapex can definitely lead to addiction like you describe and compulsions and can worsen ones you have before you start mirapex. In addition up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work.

So it would be a good idea to come off it.

Mirapex is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off it, reduce by half of a .125 mg tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis to help temporarily. But in the long run, you will be glad you came off it.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off mirapex although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

The antidepressant you are taking makes RLS worse for many people. There are two that are safe for RLS - Wellbutrin and trazodone. I don't know if they will help with your irritability or not.

On the concerta since it lasts 12 hours, take it in the morning so the stimuland effect will wear off by the time you need to go to sleep.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[toronto-beach in reply to SueJohnson]

Thank you Sue

I had my iron levels checked and they were all in line. I tried Wellbutrin but had some bad side effects with my irritability, but I don't think I've tried trazadone, so I might consider that one.

I wasn't aware of the recommendation for gabapentin, so I will plan to talk with my doctor about making that switch.

Thank you for your full reply. Many of my symptoms are similar, as well as the treatment recommendations. Ice cream and most deserts are typically off-limits for me in the evenings for this reason. I've also found that certain cheeses on pizzas really exacerbate my RLS. I've found red wine to be tolerable, but beers and whiskeys make it much worse for me. Stretching gives only temporary relief, and when it is needed I find I'm stretching my calves every few minutes.

I can say for sure that foods within 4-5 hours of bedtime directly impact my RLS, so much that I'd say it is the primary contributor to a successful night of sleep.

[SueJohnson in reply to toronto-beach]

Do you know what your ferritin was? Doctors will say it is fine but what is fine for others is not fine for those of us with RLS. If you don't know, ask your doctor.

[toronto-beach in reply to SueJohnson]

Iron: 141

Transferrin: 318

T.Iron Binding Cap: 474

% Saturation: 30

[SueJohnson in reply to toronto-beach]

Ferritin? That's the important one. The others don' really affect it unless the % saturation was below 20.

[toronto-beach in reply to SueJohnson]

Hmm I haven't seen that one in my recent bloodwork. I can ask about that

[Joolsg]

sciencedirect.com/science/a...

The link to Impulse Control Disorder has been known for years.

I agree with SueJohnson. Get off Mirapex - slowly. These drugs are worryingly dangerous.

File a report via the FDA in the US. Unless patients report these serious side effects, doctors don't realise how many patients are suffering.

I suspect that once your dopamine receptors have settled ( can take months or years) your ADHD will also settle.

[Munroist]

I can identify with some of the behaviour you describe and I’m not on any medication. I find the internet very interesting, there’s an amazing amount of stuff out there on all aspects of human life and it’s frequently written to attract and retain your attention. If I combine that with feeling tired from not sleeping because of the RLS and a natural tendency to procrastinate it means I can easily spend a few hours looking at articles on my various interests. I also find myself looking slightly obsessively at emails, almost hoping for a new one. However you do sound like you may have gone to the next level. Whether that’s just the medication or a combination of things it’s certainly good to recognise it and to talk about it, and as others have suggested in the long-term coming off dopamine agonists could be beneficial.

[sandcat98]

Hi, I have had fairly severe PLMD and RLS for many years. I have been taking 1200 mg of Gabapentin but hasn't helped much. I also was taking Prozac but it exarcebated my condition quite severely. I was taking 150mg of Wellbutrin which does not exarcebate RLS (in fact, it may help RLS a bit), but it didn't help with depression/anxiety. Perhaps the dose was too low, so I am thinking of asking my Dr if she recommends switching to a higher dose.

[SueJohnson in reply to sandcat98]

You could ask to increase the Wellbutrin but you might want to try trazodone which treats depression, anxiety and insomnia instead of Wellbutrin. It also may help RLS.

Are you taking the 1200 mg of gabapentin as I described above in divided doses? Also according to the Mayor Clinic Updated Algorithm on RLS the usual effective dose is 1200 to 1800 so maybe you are not taking enough.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.