Tapered off Mirapex about 8 weeks ago, new meds causing morning sedation and anxiety. Do I just have to cope with that?

[Aeonkontiki]

Hi all- my first real post here, thought I should introduce myself! I have a lot of questions...

I've had RLS since I was 12. Have been taking Mirapex for 30 years maybe? Up to about 1mg/day, was augmenting. Was tapered off, last dose in late Sep 2021. I see an RLS doctor at Yale, he seems pretty good (Brian Koo). We tried Oxycodone, too sedating, now I am on Methadone (I take 5 mg, can go up to 10) and gapapentin (he prescribed 300mg, I only take 100 right now). 300 mg of gabapentin does obliterate the RLS, but it also obliterates me- I can barely drag myself out of bed in the morning.

I also have ADHD and I take the Daytrana patch during the day (10mg) and 5mg of Adderall before I even get out of bed, like 6am, just to cut through the morning fog I now have.

I'll try to keep each question in a different post, but I guess right now my question is, how much do I just have to accept morning/daytime sedation? Right now I am having a LOT of breakthrough RLS- oddly it's in my calf muscles and feet... before it was always in my hips, upper legs, lower back. I'm sleeping somewhat better than before the taper, like my sleep monitor app says I am getting more sleep, but it takes me over an hour to actually fall asleep and I wake up a lot.

In the mornings, and during the day I often feel anxious. I guess I am not sure how much of that is medication related, or a fear that I won't be able to wake up naturally any more, or that I will always feel this way. I was hoping that by now I would wake up feeling refreshed/ optimistic/ energetic, as one does after a good night's sleep... but I don't.

I haven't exhausted options with my MD, I just felt like a complainer- messaging him every few weeks that I still felt tired during the mornings. He's been very responsive and has offered different opiates, etc. I guess I just have an unfounded worry that he will say "you just have to deal with the sedation". I have also been getting migraines more frequently (2x a month as opposed to once every two years)

Anyway, reading everyone's stories is so incredibly helpful. It may still be early days for me, since I was on Mirapex/pramipexole for so long... so it may be sort of still a withdrawal and recalibration process. But I also know that there are other things I can do such as cutting back on caffeine and increasing exercise- I am working on getting my iron levels up, taking magnesium, and other things. I wonder if I should go on an antidepressant but I really don't want to add that to the mix if it's more of a lack of quality sleep thing.

thanks in advance for any advice or suggestions!

[Jelbea]

Hi Aeonkontiki and welcome. I see you have quite a problem and are on pretty strong medicines. Could it be possible that your Adderall could be causing some of the twitching in your limbs? This is only a suggestion. Others on the site are much more experienced in helping and will duly be along to reply to you.The only thing I find interesting from my point of view is that when in my sixties I developed some numbness in the side of my face (actually came from nerve pressure in neck) and my doctor at that time wrongly diagnosed it as trigeminal neuralgia and prescribed gabapentin for me. Up until that time in my life I never had had migraine at all and suddenly I was getting auras from migraine almost daily - sometimes with severe pain and sometimes just the aura followed by a heaviness in my head for several hours. This all came about after starting on gabapentin. Gabapentin is sometimes used to treat migraines but in my case it seemed to trigger them off. Unfortunately stopping the gabapentin did not stop the headaches although they settled down well after I was prescribed one low dose aspirin daily by the London Migraine Clinic. They thought the migraines were caused by "thick" platelets in my blood and the aspirin worked so well that I only took a headache about twice a year.

As I say others will be along to help but I just wanted to tell you of my experience of gabapentin.

Wishing you well

[Aeonkontiki in reply to Jelbea]

Interesting re: migraines and gabapentin- I have a neurologist I can run this by, unfortunately I have to pay him out of pocket.

The adhd stimulants probably do exacerbate the RLS. But I kind of need them to function… so I can talk to my shrink more about that, or switching to non stimulant adhd meds.

Thanks for your reply!

[Jelbea in reply to Aeonkontiki]

I do understand. My son had ADHD and was treated when a boy with Ritalin. He is in his forties now and the ADHD does no longer seem to be a problem. I have told various doctors since I was given the gabapentin and none of them seemed to take it seriously. However, I find it very strange that I got to my sixties without migraines and suddenly after starting gabapentin they started and became frequent. Sometimes I think doctors would need to take what we tell them more seriously. I was told "gabapentin treated migraine not caused them" except by one neurologist who took it seriously and seemed to think I was perhaps sensitive to it in some way.Anyhow I hope you get it sorted.

[Hidden in reply to Jelbea]

Hi Jelbea, I can relate to your story of Gabapentin, though in my case it was magnesium - which like Gaba is supposed to be great for migraines. From birth to age 35 I had one migraine in my life (at age 35) and remember thinking to myself, "wow so this is what a migraine feels like." It was a severe headache combined with nausea and sensitivity to light. I came this close (-) to puking even though my stomach was mostly empty.

I always had mild headaches a couple of times a year especially when not eating much. Fast forward a decade (or six years ago) and I start taking magnesium (among other supplements I was taking) altering between different kinds of magnesium and at some point I was having a migraine most every day (probably except when I forgot to take the magnesium). I carried on each day, but was aggravated beyond words. No aspirin or anything would help. Sometimes I would even take more magnesium!!! Along comes Covid in March 2020 and my husband and I in April 2020 decide to throw caution to the wind and go for a hike in an abandoned ski hill area. I fell down hill and banged myself up pretty bad, but refused to go to a doctor. No point, nothing was broken, I just looked like a giant purple grape from head to toe. I was so angry with myself and the world that I stopped all my supplements, except iron and MK7 and vitamin D. After about two months I realized that I hadn't had a migraine in weeks. At some point after about a year I reintroduced the basically three supplements I had given up which included taurine, magnesium and CoQ10 and discovered it was the magnesium. Life is sooooo much better without migraines.

I'm glad I didn't go to a doctor for migraine treatment. Plus to me they were atypical migraines. I didn't really get nausea or light sensitivity with them. I was going to figure it out myself or die trying. What's interesting is that I could fall asleep with migraines, but I would never be able to fall asleep with RLS, so I would always choose migraines over RLS. RLS is the worst of the worst of the worst.

So, yes, I have no doubt the Gaba gave you migraines, but I might have been dismissive of this fact if I did not have the same situation happen with the magnesium - any and all forms of magnesium - I own them all. Want some? In yet another twist, a relative of mine who suffers migraines went for some new-ish treatment with monoclonal antibodies and developed RLS!!! A rare side effect (so far at least) of this treatment. I hold the position (as did Dr. Allen) that it is actually about 30% of the population that has a predisposition to RLS. So in order to get more attention to this disease I think we need to stop saying it only affects 5 to 15% of the population and start saying 30%.

[Cather in reply to Hidden]

Jelbea,I was also on Mirapex for about 30 years: 5.0 mg. Then four years ago, augmentation set in. So I tapered off and stayed off for about 8 months. I began to suffer anxiety and could get little sleep because of the rls. So, reluctant to go on any strong medication, I went back on the Mirapex-pramipexole at a dose of .125 mg - the lowest dose I could get. I have been on that low dose for over 2 years now. I find that I have to go off the medication for two weeks about every 5 months. The the .125 works again. Recently, I began a low dose of ferrous sulphate. The two low doses are working. I have had no rls symptoms for 2 weeks. I am sleeping well. I don't know how long this will last, but for now, it's heaven.

Cather

[Hidden in reply to Cather]

Yay!!! I'm amazed and relieved that you got relief. So many people who are on DAs and/or augmenting or withdrawing from them give the iron a thumbs down in terms of "immediate relief." Yet almost everyone who is drug-naive and tries the iron will get immediate relief. Well, it's working for you so I say don't change a thing, but (isn't there always a but) if and when you're in the mood to mix things up take a look at my profile page to see how (and what form) I take my iron

[Elffindoe]

Hi, the adderall as Jelbea says may be making your RLS worse.

Taking almost any antidepressant can also make RLS worse.

It sounds like poor quality sleep may be part of the problem rather than sedation.

In that case the antidepressants trazadone can help sleep but does nt worsen RLS.

Also see what others taking an opioid say about sleep.

Cannabis can also.

See comments by Jools.

In addition, do uou have sleep apnoea?

I wouln't be too premature in expecting sedation. It's a matter of finding you own balance

[Aeonkontiki in reply to Elffindoe]

No, I did a sleep study this summer to rule out sleep apnea. One less thing to worry about

[Wairahi]

I would consider the possibility that the issue is interactions between your medications, rather than the gabapentin itself. I am on 1200 mg gabapentin at the moment, without morning fog. I have been on 1800 mg, and likewise no morning fog. I would suggest perhaps taking your gabapentin earlier in the evening. I take mine at 3 pm (600 mg) and 6 pm (600 mg). It does give me fog, but that is gone by 1 am.

Regarding your Pramipexole, I would suggest that you might be able to start that again after a year or two, after the augmentation affect has washed out of your system. You might find that 125 µg works well, and gradually increase over the years as augmentation kicks in again. Increase as slowly as you can. I have been up to 1200 µg before having to withdraw it.

I would also suggest trying yoga and Ayurveda as adjunctive therapies. If you’re interested, I can give you more information about where to go for Ayurveda.

Best of luck!

[Aeonkontiki in reply to Wairahi]

Thanks! I started taking my full dose of gabapentin (300mg) earlier in the evening (4pm and 6pm) - it’s helping a lot!I’ve studied Ayurveda and done yoga intermittently for years. I’m just lacking motivation at the moment…

[Wairahi in reply to Aeonkontiki]

Glad to hear that suggestion is of some help.

Re Yoga: What has been discussed on these pages is that there appears to be some kind of interaction between the buildup of tiredness chemicals in the muscles and tendons, probably notably lactic acid, and RLS symptoms. People have noticed that when the muscles and tendons have tiredness-sensation in them, it appears somehow to trigger more acute RLS. If you have space on your bedroom floor, you could try rolling out of bed when symptoms begin and do some yoga stretches. Some people find this a big help.

Re Ayurveda: Rubbing Sahacharadi oil into the leg muscles — once symptoms begin — has brought me great relief.