I am a little lost in my tapering regime

[Kejimkujik]

I am tapering down from 0.25 pramipexole 3X daily. About the beginning of february I started with an iron supplement of 300mg every other day, taken with 500mg vit C. March 1st i started with gabapentin at 300mg daily in the evening. After three weeks on this I started to decrease my dose of pramipexole by 1/4 tablet at a time. I would wait for a few days to see the RLS symptoms settle out, and then decrease again. During this time I started to increase the gabapentin every few days by 100mg. When I reached 600mg, I continued to increase the dose but took the increase two hours earlier. I am now on 800mg gabapentin and down to 0.325mg pramipexole. I am reading some posts and now wondering if maybe I should be using the buprenorphine/naloxone to continue the tapering off pramipexole. Do I keep taking the gabapentin (it does cause brain fog and dizziness in the mornings mostly),? Do I increase the gabapentin or just settle with the buprenorphine/naloxone if it works for me? I am feeling a little lost now in what I should be doing. The RLS can be severe at times, but seems to clear after twenty four hours or so and stay managed, but goes nuts if I decrease the dose without first bringing up the gabapentin. I am still taking the iron supplement every other day and at least two hours after a dose of gabapentin. I think I am confused.

[DesertOasis]

Hi K, it sounds like you’re managing withdrawal quite well. I read that you have hypothyroidism which does seem to worsen symptoms of RLS as does many other conditions. You were prescribed DAs at quite a young age? Do you know why? A history of your RLS is important because we need to get you back to pre-DA baseline and treat your baseline symptoms the right way, not the DA way. Btw, I hope you’re aware that many drugs make RLS go crazy like SSRIs, tricyclics, HRT, Metformin, calcium channel blockers and melatonin. You will never have a moments peace while on these drugs.

50mg of ferrous bisglycinate on a completely empty stomach each night controls my drug-naive RLS. Others on here have found similar relief. Do you sleep better on the nights you take iron? Stop eating after 7pm since this too may help a little and several people on here, including myself, find sleeping in the prone position gives them a little bit more relief.

I cannot provide advice in terms of amounts or timing of GABA or Bup, but I know that it’s important to take whatever is at your disposal to get you through withdrawal which should be much easier now that you’re established on the GABA and have Bup in the wings. Your RLS will improve dramatically once off the DAs and your dopamine receptors will crawl back to baseline. You may be shocked at how little medication you need once that happens. Sue gets by with just Gaba, Jools with a small amount of Bup, others with a small amount of tramadol.

I maintain that we with RLS need to take some amount of a highly bioavailable iron supplement every night since human’s serum iron (not ferritin) plummets at night and this is a major contributing factor to our mainly nighttime RLS. I can feel the RLS dissipate from my body about an hour or two after taking it. Because of so many positive reviews I am now also recommending daytime doses of magnesium glycinate. Some have gone from DAs to Gaba and magnesium to magnesium only.

[DesertOasis]

I just did a little research on TSH, the thyroid and our dopamine receptors. An old article indicated that hypothyroidism actually increases the sensitivity of our dopamine receptors. That’s what we with RLS want. And I read that TSH peaks between 11pm and 5am. That’s bad, if my theory is correct. That means our dopamine receptors become less sensitive at night with that rise in thyroid hormone. For some reason Mother Nature (in her infinite wisdom?) has done everything in her power to limit dopamine release in humans at night. That available pool of dopamine in our brains drops at night, that free-floating iron in our bloodstream, which acts as the grease and glue to keep our dopamine receptors chugging along, plummets at night, and now I see that TSH rises at night - a substance that seemingly makes our dopamine receptors less sensitive. What I would do if I were you, and please know that I’m dangerous, is take my synthroid in the morning before breakfast as many doctors recommend. It seems just as many recommend taking it at night, but I, a person with RLS, would ignore them.

[Kejimkujik in reply to DesertOasis]

Thank you fkor your reply and advice. I was prescribed pramipexole in 2010 and I was 48 then. In 2009 my RLS was probably severe as it was disrupting my sleep most nights and after trying a whole range of things, diet changes, changes to my exercise regime, etc I went to the Dr I had then and he prescribed levodopine (levocardopa). The RLS escalated to affecting me ever more through the day such that even 20 min passive time such as driving became the most I could do without stopping to run around for five minutes, drive a little longer and repeat. As my work as a farrier required driving, this quickly became impossible on safety grounds. I was then referred to a neurologist who prescribed pramipexole, 3 x 0.25 mg daily if needed. At first it was like a miracle as the RLS disappeared. Slowly it re-emerged and for the last some 10 years it was held for the most part by the 3x daily 0.25mg. 5 years ago I was diagnosed with an underactive thyroid and started on thyroxine (synthroid). Then two years ago I fell badly on ice and had a severe whiplach and experienced a significant brain trauma that I was unable to recover entirely from. It left me with some levels of cognitive disfunction, balance and back pain. Three months after the fall the RLS went nuts and has stayed barely managed ever since. I have had RLS since a child and it definitely runsnin our family as most of my siblings get it, albeit milder, and our mother had it.

I think the iron supplement has helped reduce it and by the second day when I am due to take the next dose I am noticing the rls is more frequent and severe. I wonder if taking it in liquid form would allow better absorption? I see my neurologist on Monday 15th so not making any changes for next couple days as I have no driver to get me there so will be driving on my own and right now the rls is manageable. I wish the brain fog and fatigue/urge to sleep was better under control. That is a bigger concern. Not sure if that is the Pramipexole or the brain trauma….I think it is the pramipexole but ….. Oh I do take the thyroxine first thing in the morning on an empty stomach. Always have as per my sisters recommendation (a trusted doctor).

[DesertOasis]

Ok, so you have that somewhat severe familial RLS. What do your siblings do for it? I’m glad you’re not taking any HRT or SSRI. I am working on my sub-clinical chronic fatigue which my 25 year old son also has. I’m convinced it’s due to my gut microbiome but trying to figure out what a healthy gut microbiome looks like is similar to trying to count the number of stars in the universe. If I figure something out I’ll let you know. What’s disheartening is the fact that my lifelong IBS has been 100% better for quite a while now yet the fatigue persists.

No, no need to switch to “liquid” iron. Just simply switch to ferrous bisglycinate in capsule form. Take around 50mg on an empty stomach about two hours before bed. Take it EVERY night and try to take around the same time so you’re putting 24 hours between doses. Don’t sweat it if it’s not. I predict good things for you 🌈💥

[Kejimkujik in reply to DesertOasis]

Thank you for this. Today I am feeling a real sadness and despondency about life. I have noticed more of these deep feelings over the last little while along with some pretty strong anger outbursts… hard today to see much to feel hopeful about. One day, one hour, one minute at a time. Hanging out with my sheep, and having the lambs come up for scratches helps. I will try the iron bi whatever daily. Everyone else in my family who have RLS have it milder so a contrast foot bath of hot then cold or a warm shower, or drink or yoga helps them. Sometimes a warm shower can aleviate things for a couple hours but not very practical for the rest of the day. I will do that in the evening to try to get into a good headspace to sleep. Thank you for your reply it is good to know there are people who get it.

[DesertOasis in reply to Kejimkujik]

Is there anyone over the age of 35 who does not feel lost, despondent and like, what’s the effen point of it all. Well, my husband is ok in that department. But he’s essentially a caveman so not a fair example. I’ll find an article about Rachel Maddow (she’s from Canada) and you can read it whenever you’re down. I also feel pretty confident that your TBI has something to do with it, in no small part. What meds do they have you on for that?

[Kejimkujik in reply to DesertOasis]

Not on any meds for TBI. Will read the article and thank you for that. I also remind myself that these days and feelings will change, feelings always do and that I am in deed coming out from under the smothering cloak of pramipexole … onward and upward even if by the moment. That is better than before.

[DesertOasis in reply to Kejimkujik]

Please read this whenever you feel awful. I do and it helps. today.com/today/amp/tdna164587

[SueJohnson]

I would not increase the gabapentin at this time as it won't help much until you are off the pramipexole. I would increase the buprenorphine.

[707twitcher]

You are unusual in that the gabapentin seems to be helping with your RLS, even while still on pramipexole. As Sue mentions above, it generally doesn't work much until one is completely off DAs.

I would certainly encourage using buprenorphine (or methadone) to help with the rest of the tapering process and after. Like Joolsg, it completely stopped my RLS from day 1, even while tapering. If you can't get an Rx for that or another opiate, I'd suggest upping the gabapentin as that does seem to help you. But stop increasing if you don't see a benefit.

As far as your depression, read up a bit on DAWS (DA withdrawal syndrome). Most of us experienced depression while tapering down, and maybe for another month or so after coming completely off the DA. But then it gets better, day by day. So take solace that it is temporary. There are a couple anti-depressants that don't increase RLS symptoms for most - Bupropion (Wellbutrin) and Trazadone (I think?). Maybe ask your doc about that monday? It should be only a short-term need.

[Kejimkujik in reply to 707twitcher]

I am okay with the waves of depression: I went through similar when healing from a head injury and know it will pass. I think what is making the tapering off pramipexole maybe the iron supplement that I have been taking since beginni g feb, maybe january, given that gabapentin won’t have any affect until I am off pramipexole completely. It is the only consistent change I have made. I am going to start buprenorphine and get off pramipexole completely. I am finding the 800 mg of gabapentin a bit much to handle, as it is leaving me feeling lethargic, foggy and a little disoriented during the day. Having spent over a year experiencing this from a head injury I am having a hard time re- experiencing this. I see my neurologist tomorrow so will discuss this revised plan with her. She has already given me a prescription for saloxone, so clearly has an expectation that I would need it. Just 0.375 left to get rid of and I can start healing from this dreadful drug pramipexole. Feels good to be half way there.