Restless Legs Syndrome (RLS) Discussion Board

I have just successfully transitioned from pramipexole and Neupro to Lyrica. Yay! I transitioned because of augmentation and impulse control disorder. Had quite a few sleepless nights but I think the Lyrica helped - that and some CBD:THC (4:1) vaping. I am currently on 200 mg and will have to increase my dose to 300 because it is not holding me at night. However, I am so,so tired on Lyrica. I feel like I'm in a fog all the night. I have no energy to do anything on this drug and it's only been about a week and 1/2. Luckily I work from home, because I'm staying in my bathrobe until noon! I just can't get going. Will that change as I'm on it longer or is this an indication that I should try something different?

brossman wrote:... I am so,so tired on Lyrica. I feel like I'm in a fog all the night. I have no energy to do anything on this drug and it's only been about a week and 1/2. Luckily I work from home, because I'm staying in my bathrobe until noon! I just can't get going. Will that change as I'm on it longer or is this an indication that I should try something different?

Exactly what is the problem when you say the current dose isn't working well enough? Waking up and not being able to go back to sleep? Waking up with urge to move symptoms (jumpy legs)? Both? Something else?

Zombie feeling the next day is the most common side effect of gabapentin/Lyrica/Horizant. Some people get over it, some don't. I haven't used Lyrica, but have used gabapentin and found I could not go above 150mg/24 hours without becoming nearly incapacitated the next day. Hopefully someone who used Lyrica will chime in.

I would not increase the dose until I was sure I could tolerate the current dose. Your choice may come down to using a lower dose of Lyrica combined with either a tiny dose of pramipexole (like 1/2 of a 0.125mg tablet) or Lyrica combined with a small dose of opioid, or an opioid alone.

The problem at night is that my jumpy legs break through the Lyrica and I have to get up and move about. I do feel like a zombie especially at night when I have to get up and move (climb stairs, stationary bike riding). I have no problem going to sleep or getting back to sleep, which is thanks to the Lyrica. I go to bed an hour earlier than I used to but feel like I could sleep all day.
Do opioids tend to make people as tired as Lyrica?

brossman wrote:The problem at night is that my jumpy legs break through the Lyrica and I have to get up and move about. I do feel like a zombie especially at night when I have to get up and move (climb stairs, stationary bike riding). I have no problem going to sleep or getting back to sleep, which is thanks to the Lyrica. I go to bed an hour earlier than I used to but feel like I could sleep all day.
Do opioids tend to make people as tired as Lyrica?

What time do you take the Lyrica? What time do you go to bed? Perhaps changing how you take the Lyrica will help.

The zombie at night feeling probably will persist. The zombie next day may or may not improve. It is unlikely that you will be able to control urge to move (jumpy legs) with Lyrica alone. Two major choices: 1. add small dose of pramipexole or 2. add/switch to opioid.

Simplest is add TINY dose pramipexole. I would start with 1/4 of a 0.125mg tablet for a few days, if not better, increase to 1/2 tablet. Don't go above 1/2 tab no matter what. You are at significant risk for problems due to your prior augmentation and impulse control disorder. There is a risk, though probably low, even at very low doses.

Opioids are a completely different bag of worms. First problem is finding any doctor that will prescribe them. Next is which opioid and what dose. Besides just getting the med, some people have a variety of side effects, most however get better with time. One problem that doesn't get better with time is hyperalertness (can't fall asleep even though extremely tired/sleepy). That usually requires dose and timing changes or switching to a different opioid.

One option is to add kratom to the Lyrica. Kratom is a natural leaf product that acts somewhat like an opioid. It is available in most states over the internet.

Long term, your best option, if you qualify, is IV iron infusions.

Luckily I'm working with a doctor at Mayo who will prescribe opioids. We have discussed the possibility that Lyrica won't work for me and then we would move onto opioids.
In the meantime, I might try to get some kratom as suggested. I am so reluctant to add back any pramipexole at this time as I just got off of it - even the tiniest dose recommended.
My last ferritin one month ago was 197, so my doctor is not recommending IV iron infusion at this time. She actually said there is some evidence (which I have not seen) that people with a strong family history (my maternal grandmother, mother and sister) of RLS do not respond as well to an iron infusion.
I'm going to give the Lyrica a little bit more time to see if I adapt better to it and I can find a dose that controls my symptoms.
Thanks for the support.

brossman wrote:... She actually said there is some evidence (which I have not seen) that people with a strong family history (my maternal grandmother, mother and sister) of RLS do not respond as well to an iron infusion.
...

Interesting comment. Your family history is EXACTLY the same as mine, except that, in addition to a sister with RLS, my brother also has RLS. I responded beautifully to IV Iron. So, on a sample of one, a strong family history doesn't seem to indicate a poor response to IV Iron.

Also, on a theoretical basis (IE, RLS in most people is caused by polygenic abnormalities causing poor iron transport across the blood-brain barrier) I would expect the opposite: that most people with a strong family history would respond better to IV Iron than people without a strong family history of RLS.

I'm trying to get into Hopkins for evaluation and treatment, but the last time I called they were not accepting new patients. I have a new request in for an appointment. Although I'm being treated at Mayo in their sleep disorder clinic, I think I might get better treatment at Hopkins. My Mayo doctor is willing to do IV iron but said she didn't think it would help with my ferritin close to 200 (that may be a difference between Mayo and Hopkins in terms of what they recommend). Have successfully weaned off pramipexole and am only on Lyrica right now. It is helping moderately well at a dose of 300 mg, split between an am and pm dose. However, I have no energy to do anything and am so tired. I can also tell that it has increased my appetite, which I do not want as part of my impulse control disorder with pramipexole was binge eating with resultant weight gain. I don't want more weight gain on top of what I've already gained! I will give it another week on this dose to see if I adapt to it.

I would be very cautious if you consider adding back a tiny pramipexole dose - I would in fact wait longer before trying.

As per Holland's note re opioids, I will add to it that the hyperalertness that opioids cause (in WED/RLS patients) might exacerbate your situation - the hyperalertness seems to coincide with the medication's time of greatest effectiveness, i.e. nightime, so it wouldn't have much/any beneficial effect on your next-day Lyrica-induced grogginess. (in case you were wondering).

But with both the Lyrica and the chosen opioid at a low enough dose, you may not suffer from either side effect.

If your Mayo doc is working so well with you, and is so knowledgeable about WED/RLS, what might be better at Johns Hopkins? Are you hoping maybe they will give you iron infusions?