Hello all. I'll try to keep my history with this as short as possible. I'm 56, male, and have had RLS for probably half my life. I kept it at bay with Ambien for a big chunk of that time (dumb, I know) until that became untenable.
In the past three or four years I've tried Gabapentin (didn't really work even at fairly high does, split as is recommended for absorption, and side effects were bad for my mental health) and the dreaded Pramipexole. Thankfully I was only on Prami for about a year. Augmentation came for me relatively quickly. I've recently tapered off of it, slowly, and am now on 150mg or sometimes 300mg Pregabalin, along with 15mg Temazepam. The latter was prescribed because there was a shortage of Clonazepam in the US at the time, and it is apparently a similar class of drug.
The neurologist would like me to take 150mg of Pregabalin and the Temazepam as needed (versus Temazepam every night during the taper). I think he wants to see if 150mg of Pregabalin will take care of it once I get back to baseline.
Going without the dopamine agonist has been brutal, as was expected. It's only been a couple of days now completely without it, so I expect it will continue to be rough for a while.
I've been trying to get this resolved in earnest for a couple of years now, and at this point am pretty sure it's refractory. My current neurologist / sleep specialist will not prescribe opioids, but has referred me to one who does. I'm meeting with them in September. I'm in Colorado, USA.
I'd love any thoughts on these recent iron/lab numbers, which as far as I can tell look pretty good. I should mention I did go through a round of iron infusions, once a week for four weeks, ending February 12 of this year. A few weeks after those infusions I thought the symptoms were lessened a bit, but were certainly not resolved.
These are fasted, first-thing-in-the-morning results after discontinuing oral iron for 7 days. All values ug/dL unless otherwise noted. This is how the lab (Labcorp) presented the numbers.
Iron and TIBC
Iron Binding Capacity 306
UIBC 200
Iron 106
Iron Saturation 35%
Transferrin Saturation
Iron 105
Transferrin Saturation 30%
Transferrin 246 mg/dL
Ferritin
Ferritin 275 ng/mL
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ID158
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Welcome to the forum. You will find lots of help, support and understanding here.
Your iron is fine.
Temazepam is better than clonazepam because the half life of clonazepam is 40 hours which can make you sleepy the next day. I'm not sure about taking temazepam just when needed as you can have withdrawal effects on most benzodiazepines but perhaps if you only took it a couple times a week that might be OK.
I assume you only meant take the temazepam only when needed not the pregabalin.
Do not switch between 150 and 300 mg of pregabalin as you will have withdrawal symptoms. It will take 3 weeks before it is fully effective and it won't be fully effective until you have been off the pramipexole for several weeks and your symptoms have settled. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
Did you try gabapentin while you were on pramipexole? If so it wouldn't work very much.
Do try the pregabalin before going to opioids but if you do I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.
If the pregabalin doesn't work, you need to come off it very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have very few or no withdrawal effects
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you Sue. Nice to see you here. Miss you on the Reddit sub. The moderators made a big mistake there, and I told them that at the time.
I'm very familiar with the Mayo algorithm, thank you.
I'll stick to the 150 pregabalin dosage for the time being, then. I'll have to see if the doctor will prescribe it in 25mg increments. I imagine he will. For now it's just the 150mg capsules.
I did use gabapentin on its own for a while, but then also with pramipexole. I got to 1200mg on its own and it did not do the trick, but certainly made me depressed.
As-needed is only for the temazepam, yes.
I should have mentioned the opioid-friendly doc appointment is set up as a backup in case the pregabalin does not work. I didn't want to wait and see, and then try to set it up, and then be told it would be 4-6 months before I could get in. So we'll see if it's necessary.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
Can you give me the name of the neurologist who will prescribe opioids for my records as there are so few that do and that way I can recommend him/her to someone else who may need it.
I normally take 65mg of elemental iron with vitamin C (brand called Vitron-C has both in one pill) right before going to bed, after brushing my teeth basically, every other night. Though now I'm reading that maybe I should be taking *two* of these every other night. I need to look into that further.
I think it may have more effect on your RLS if you take the iron earlier in the evening allowing the iron to be present when going to sleep. Just a suggestion. I do the same as you because it is easier. However, iron supplementation seems to be more effective if I take them earlier.
Were you ever diagnosed with low iron? Dipyridamole may help and has very few side effects.
My understanding was always that iron levels don't really react so quickly, the way that, say, pain responds to ibuprofen or whatever, and that the main thing is to take it on an empty stomach with a full glass of water to get maximum absorption. But, hey, I'm always up for trying something that might help more!
No, I've never been diagnosed with low iron in the traditional sense. I've read about dipyridamole and even mentioned it to my neurologist, but he did not seem to be familiar with the literature on it as it relates to RLS. I should probably put a study in front of him next time I see him.
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