I had an appointment with my cute shrink yesterday, and it was an extremely productive one at that. The first thing that he wanted to do was to discuss my medications. And the first medication that came up was Ativan. He wanted to know if I was still taking it and when I went No, they won't allow me to have it anymore, and my thoughts on that are that it absolutely sucks, as it's the best med that I have ever had, and so I hereby request that you once again prescribe it for me.
It would appear that his main concern is that it's a highly addictive drug. And my immediate reaction was, 'I'm 65, who the fuck cares'? (Okay, so a quick apology ensured, which was accepted immediately with a wry smile). He counteracted with, 'But it is quite likely that you could live for another 20 years'. 'Bite your tongue doc, what makes you think I want to go on for another 20 years. Coz I've got some news for you .... I most certainly do not'.
And I meant it too. I am not living a life, I am existing, surviving at the best. And that is just not good enough.
So ... after a little bit of discussion, he finally agreed with me and instructed my GP to facilitate.
With my GP sitting beside me, I smiled up and looked at him, and he had lowered his head, and was slowly shaking it from side to side. Huh my win. Don't you just love the fact that your shrink out-trumps your GP.
As last night was my first night back on the Ativan, I can honestly say it was the most beautiful sleep I've had in months. 8 to 9 hrs of total uninterrupted sleep, and without any dreams whatsoever. And because of that, when I woke up, had a stretch, and it felt great, and I actually wanted to get out of bed. And now I'm totally off the Temaze, which hasn't been giving me good results of late. eg: early waking and not being able to resume sleep. And the hideous dreams that one can have. So real that on awakening, you are unsure of your whereabouts. And it can take you awhile to be able to figure out, that it was actually only just a dream and it wasn't real. As I already I bid you all a goodnight. I'm off to have another great sleep ni-night.
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TEAH35
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Good for you, and good that you fought for quality of life. Isn’t it wonderful to be able to sleep through the night? ‘Ordinary’ people simply don’t understand, I assume.
Nice one! A direct hit on the Scrooge GP. Love it. As you say, addiction is better than living in a horror novel where no one can see the creature that ruins your life. Sleep on.
Why do doctors make us feel so bad when we want medication? I am 74 years old just wanting a good nights sleep and to able to sit a little during the afternoon, and I almost have to beg to get what I need. My GP has given me Pregabalin which seems to be working, alongside Tramadol. But he wants me now to cut the Tramadol. I would love to do that, but that means sleepless nights again. 100mg at night Pregabalin lets me sleep for a while,but not enough and when I asked for another 25mg he would only give me a few days, not extra on prescription. Do any of us ask for tablets we do not NEED!? As someone said, it’s a constant battle and it shouldn’t be - we have enough problems just surviving. It’s wearing me out.
Hi, Camperqueen, sorry to hear of your GP's position. You might consider asking him/her, non confrontationally, if they'd be willing to work with you to help find a medication regimen that is effective enough to quell the RLS symptoms during the evening and nighttime, so you can get a good sleep. You could mention that the maximum recommended dose of pregabalin is 300 mg, so perhaps they could bump up the dosage on that one. Alternatively, if you're finding the Tramadol to be really helpful, ask your GP if they'd be willing to keep that at the same dosage, along with the 100 mg of pregabalin.
To help support the request to keep Tramadol at your current dosage, you could print out this 2018 Mayo Clinic Proceedings article by a group of the key RLS experts here in the USA. It is the current gold standard on "The Appropriate Use of Opioids for the Treatment of Restless Legs Syndrome,"
Also, ask to have your blood iron levels tested. In that test, your ferritin level needs to be at least 100. That is higher than the usual "normal" range for non-RLS people, but for us it can be very helpful (myself included). If you like, I can send you the link for the Clinical Consensus Guidelines for Iron Treatment for Restless Legs Syndrome.
Could you post the link for the Clinical Consensus Guidelines for Iron Treatment? I had to endlessly bug my sleep doc to test me 10 years after I'd started seeing him. He was initially (10 years ago) aware of RLS/low iron relationship, but having found me in my mid 50's for iron, (if < 50 is low, so > 50 is OK), he dropped the whole issue. I convinced him this past year to re-test finally, providing him a few lines from some info reported by Dr. B (the CA doc who's name I can't recall) only to find I was still in the 50-60 range for iron vs >100 as recommended by those who are "in the know". I was finally put on a 325 mg ferrous sulfate and 250 mg Vit C - and my iron levels are now > 100 (around 117 as I recall) and I DO feel a bit more under control (not having mid-day issues as much, though as I'm gradually weaning from US 0.5 mg pramipexole (now down to 0.125 or 1/2 of a US tablet, I'm nearly total sleep-deprived). I'm decreasing my pram as I increase the Gabapentin from what had been US 200 mg up to 600-800 mg or possibly switching to Horizant or Lyrica...once pramipexole is out of my system. But the whole Iron thing needs to be broadcast, broadcast, broadcast. We RLS sufferers are NOT normal at levels < 100, despite what most docs who aren't in the "know" know. Thanks.
Here’s the paper on iron: sciencedirect.com/science/a.... Getting it up further may help. Your current reduction process from pramipexole may very likely make your symptoms worse, but common experience from many on this forum is that symptoms settle down once you’re completely off the pramipexole. Although it may take a while after your last dose. Iron high up in the normal range may indeed help, so it seems wise to continue taking the iron.
Thanks for the reference - printed and bringing to my doc (likely he reads Sleep Journal, but who knows?). And I'll talk to him about increasing my iron - I've not had much problem with it - take it before bed, typically an hour or so after an evening fruit or popcorn snack, with the Vit C. It's not the gentle iron version though. Do you know if that version is as effective as the iron sulfate? Less symptom (stomach cramps/constipation or diarrhea inducing? I've not had any so far on what I've been taking but would be a concern for higher amounts.)
So you've gotten the link to the iron paper from Lotte. And I agree with her that getting your ferritin level up higher than 100 may help more. For myself, I didn't notice much benefit until mine was above 300. Others have reported similarly.
I would also add that you may want/need to consider taking an opioid while you're coming off the pramipexole. Many of us have found that only opioids can really help make weaning off DAs tolerable. For some of us, Tramadol is enough. For others, a stronger opioid may be needed, such as methadone (the clear favorite of most RLS experts, but hard to get prescribed in the UK), oxycodone or OxyContin (or Targinact, a combination of OxyContin plus naloxone to help reduce opioid-induced constipation, and the only strong opioid approved in the UK for RLS). These meds must be approached with caution, of course. But if you are inclined to explore that route, see my link above for the link to the Appropriate Use of Opioids for Treatment of Restless Legs Syndrome. It's a very good, very comprehensive paper.
So far now after about 4 weeks into withdrawing from 2 tablets/day of 0.25 mg (US version) pramipexole (total taken 0.5 mg), I'm down to 0.125 mg, broken into 2 pieces, once early evening, once before bed. With each reduction, I end up with 2-3 very crazy nights, then after a few crazy nights, a less crazy one, then less, then doing pretty well after some stretches and leg massages by night 4 or 5 I'm sleeping> 6 hours, then after I reduce another 1/2 or 1/4 tablet, repeat of the same sequence. Last night for 1st time I decided to break my last 1/2 tablet into two quarters (0.0625mg each) with one early evening, one at bed and slept 7 hours. During this whole transition, I've upped my intake of gabapentin from 200 mg (US version in case things are sold differently in EU or UK) to 500 mg. I'll likely be at 600 mg and possibly up to my doc's recommended limit of 800 when I finally transition off the pramipexole. Since last fall, I've been trying THC/CBD vaping before bed - and while a 2/3 CBD/1/3 THC vap pen was less harsh on my throat to smoke, it didn't seem as effective as one I've started using lately - a 50/50 mix. Also, now as I go through the withdrawal, I take 1-2 puffs immediately before bed, which does help knock me out for about one to two hours, but then if I wake up after that and have trouble getting back to sleep again, I take another single hit from the vape pen. I'd not needed the 2nd middle-of-night hit before starting to come off pramipexole, but it does seem to help...and is possibly why I've managed to do reasonably well so far. We'll see. I really don't want to do the opioid route if I can avoid it - but will talk to my sleep doc who I see this coming week about maybe getting a methadone script for just one month....lowest dose....to help me complete the whole pram elimination. Also, once through with that, I may try a month on Horizant vs. the gabapentin I've been using - or possibly switch to Lyrica, which while I've tried that in the past but likely didn't give it enough time to work.
Hi, I’ve just joined may I say I’ve taken Dihydrocodeine for near 20 years I take 2 tabs 3 times a day or 2 before bed I can sleep all night! And I suffer RLS arms legs and all my back! They are a true blessing to me As they completely stop it
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