RLS Hail Mary
My RLS has progressed such that even with meds (Gabapentin, Ropinirole, Vitamin B12, Iron) I have “attacks” where it is so bad it keeps me awake for literally days at a time because I am unable to sit or lay down for even a couple of minutes. Both of my legs cramp from my ankles, to my calfs and quads. It is excruciating pain and I become delirious from standing, walking, flexing, stretching and moving non-stop for two, sometimes three days until I end up basically collapsing from exhaustion. I have gone to the ER but they do nothing, not even admit me. I just can’t keep going like this and wonder if it is something more than RLS, but all of the doctors, neurologists, sleep study people and psychiatrists all just keep pointing me to the same solutions that clearly don’t work.
Please any insights, advice or if anyone has similar symptoms with alternate diagnoses and remedies please help.
Thank you.
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Oh I can't tell you how sorry I am for what you're going through. I am so, so sorry. I've been there, and I absolutely know and have experienced what you're talking about. Now for me personally, I of course can't say what your case is, but I can certainly speak to my experience and tell you that for me it was because of the very severe rebound or augmentation effect that happens when you're placed on roprinirole and for me also mirapex.
That's what my doctor put me on for years for my RLS and I discovered through my own due diligence that Mayo Clinic as far back as like three decades ago said they recommended strongly against dopamine agonists... I mean I know they say it's still a second line of defense against RLS now, but they strongly recommend against dopamine agonist drugs as a first line because in their studies the very thing you're describing happened to patients: Severe augmentation. And that's what happened to me too last fall, I literally felt like I was going out of my mind, I was pacing the hall all night for 4 days with ZERO sleep until my body weaned off the dopamine agonists completely and I was then placed on gabapentin.
My RLS however has gotten so severe that when my sleep doctor told me to tweak the gabapentin I knew she meant the timing of it and take it as close to bed as possible which I already had done but the RLS still broke through. So I tested for over a 3 week period titrating up on the gabapentin, trying just one extra 300 mg at a time for several nights to see if I could sleep through the night without the RLS breaking through and the only time it stopped for me was when I reached 1800 mg. So that was the first time I could sleep through the night. I've been so sleep deprived with the RLS for years so I was thrilled that I could finally sleep through the night and I was comforted by the fact that my research also unveiled that according to Mayo Clinic the average -keyword "average" -- titration for RLS is 900 mg daily to 1800 so I thought okay I'm right there in the pocket no problem. But what happened to me a week ago I never want to go through again: one minute I'm watching TV with my husband no anxiety no nothing and the next minute I'm having a medical event. Apanic attack so severe I thought I was going to die because I'm sure my blood pressure was north of 300 because it just was like I was going out of my mind. I didn't know what was causing it I wondered is this the gabapentin because again the logic of rebound you know gabapentin is a sedation effect on you so I thought have I gone too high and now I'm having a rebound??? My panic attack lasted an hour and I never want to go through what I went through that night. So when my sleep doctor found out that I had titrated up to 1800 she seemed freaked out, that's my analysis, I mean she was measured in her conversation with me but according to her none of her patients are on anything above 900, although she did acknowledge the Mayo Clinic study and what the average dosing is. And of course because she's a great doctor, she said I want you to be safe so she's transitioning me off of gabapentin and on to Lyrica because she attributed the panic attack directly to the dosage of the gabapentin. So I did some research on Lyrica and I've learned that it sounds like it's like six times more potent than gabapentin but you take a lot less of it. So we will see, but I noticed you didn't mention Lyrica in your list of meds you've experienced so I'm just hoping for the best.
Please keep us posted and I wish you well, thoughts and prayers are with you