While working through the withdrawal from Pramipexole, my doc has me on 600mg of Gabapentin at bedtime. She has strictly reduced my intake of caffeine and alcohol. I was already on half-caf coffee due to my heart condition. I was encouraged to enjoy red wine by my cardiologist, in moderation, of course, Now I have been free from anything but decaf coffee and red wine for 6 weeks. There is still a small amount of caffeine in decaf products. I have had an occasional beer or cider but only 1 of each in the last 6 weeks.
While my daytime symptoms have improved so that I can sit and read a book, watch a movie or take a long car ride, my nighttime symptoms are getting worse. I dread the nighttime. I've done my best to be consistent in my evening habits. But for no particular reasons, I will have 3 or 4 bad nights and good night. I cannot figure our what is triggering these uncomfortable night symptoms which are full body RLS. Since I have already had my nighttime dose of Gabapentin, there is not choice but to suffer through it. I have gotten our of bed and taken a hot bath in the wee hours of the morning which allows me to get some sleep between 4 a.m. and 8 a.m.
Has anyone else found out what dietary intakes may trigger RLS symptoms. Or is it the Gabapentin dose? Not high enough? Too high? Perhaps a time released medication?
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Withdrawal from pramipexole is hellish and symptoms don't settle or improve until around a month after the last dose of pramipexole, even if you're on gabapentin.
Doctors should tell you this, but most are unaware of how severe withdrawal can be.
Pramipexole should be reduced very slowly over several months. Half a 0.088 pill every 2 weeks. You can go a little faster or slower, judging how your body responds to each drop.
Raising serum ferritin above 100, preferably 200 can alleviate some of the symptoms. If your doctor is willing, a low dose opioid like tramadol or codeine or oxycodone can relieve some of the worst night symptoms. I found cannabis helped best during withdrawal.
Once you're completely off pramipexole, the symptoms of RLS increase dramatically and you get little or no sleep for 3 or 4 days, then the symptoms settle over the next month. You should try to sleep whenever you can during reduction of pramipexole. Sleep hygiene DOES NOT work.
Dietary triggers are different for everyone. Caffeine definitely worsens RLS for many people but, conversely, it also improves RLS for many.
As you're going through dopamine agonist withdrawal, it will be impossible to tell what your dietary triggers are as you will have increased all over RLS caused by withdrawal.
What you are experiencing is standard withdrawal. It is hellish. Stick with it and accept you will have very disturbed, difficult nights BUT once through withdrawal, the RLS will settle and the increased gabapentin dose should cover the symptoms.
Hi Jools. My ferritin is 98 ... which Prof. Walker says is OK. You are saying up to 200. Can this be achieved by just taking more iron supplement? I currently take 56mg daily?
The serum ferritin issue is a tricky one. The RLS doctors I trust most are in the USA. Drs Winkelman, Earley and Buchfuhrer all think the ferritin number should be above 200. Some people only experience relief with serum ferritin above 300.It will be a different figure for everyone, and, of course, some of us don't show any improvement by raising ferritin levels at all.
There is a brain 'ultrasound' type machine that can measure iron levels in the substantia negra ( where we need it) but the NHS won't be using it on a disease like RLS,( which they barely acknowledge exists.)
Raising levels by oral supplements can take a long time and as your level is 98, most haematologists might not agree to an infusion.
My ferritin was 145 but my local hospital agreed to an infusion. My ferritin went to 785. It made no difference to my RLS.
Dr Winkelman says 60% have dramatic improvement, 20% moderate improvement and 20% zero improvement after an infusion.
So raising ferritin above 100 or 200 will not make any difference to 20% of us.
You could try taking the iron supplements every other night to raise levels above 100. This study showed that it raised levels faster.
As Joolsg mentioned improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms once you are off pramipexole. It is especially helpful while you are withdrawing from a DA like pramipexole. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
It might be the wine. On the gabapentin it is not too high. That is a low dose and once you are off the pramipexole and the symptoms have settled down you can increase it as I have advised you before.
Thank you SueJohnson. Yes, I have noted your previous advice. I have had the iron panel test and been found wanting so am currently on 325mg Ferosul 2/day. At this point, I weaned off of the Pramipexole and took my final dose 5 weeks ago. It is a long road through Augmentation. It feels loke withdrawal after addiction. If I haven't said that before, that is how I understand Augmentation. We were unwittingly addicted to DAs and now realize that the drug has turned coat on us. Your advice and that of others help to realize that what I am experiencing now is withdrawal. I hope to be more proactive in getting the information out to PCPs beginning with my own.
Taking it twice a day actually reduces it absorption. Instead take twice the dose at the same time every day so it is at least 24 hours apart. You may know the following but just in case you don't: Take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with the absorption so should be taken 4 hours before the iron or 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months.
As Sue says, it might be the wine (white wine kills me, and too much red wine does the same). Or the gabapentin it is not high enough - or you need to move to pregabalin instead. I found that gabapentin was so complicated to take and did not really work; pregabalin (I take 300mg at night) seems to be (for some strange reason) more effective.
It could also be something you are not doing? Regular moderate exercise, prefereably in the morning, is usually beneficial for RLS. I find if I don't get at least 6000 - 10,000 steps a day I am more restless.
Also recently I seem to have noticed a connection between being dehydrated and and RLS. It seems to be better when I am well hydrated which might also explain why intense exercise can be problematic as I suspect I don't rehydrate well enough afterwards and sleep poorly as a result. Or it might be a red herring but as it's generally good for you I will persevere.
Interesting ... I walk between one and two hours a day, do weights at the gym and also do yoga ... still have chronic RLS. But I will definitely take note of the hydration - something to test! Thank you.
I take the same dose but also take tramadol. This is replacing requip which I took for many years until argumentation took place. Sadly, I have many bad nights as well. It's been a year and I'm slowly getting better. Hang in there. Withdrawl is a living hell. If you have good insurance I'd look at Horizant which is basically a time released gabapentin.
Thank you. I have asked my doc to consider a time-released gabapentin. I have Medicare shich may not cover that option. But I appreciate your suggestion.
The Part D programs of Medicare do not cover Horizant. Horizant has a prescription savings card makes it inexpensive which you might want to check out. horizant.com/savings
600 mg is a very low dose. I would suggest you increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 report back here and we can give you some advice. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Iron levels are good. Found a doc that specializes in RLS. Knows way more than the neurologist I saw at Vanderbilt. He also said increasing gabapentin might be necessary. I am hesitant to increase gabapentin because of side effects. I'm increasing magnesium instead. Has to be timed right with gabapentin since it effects absorbtion. Doc agreed I could stay the course for 60 days since I'm a new patient. Seeing him next week for second appointment.
You might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. You can make the switch directly. If you don't have the side effects that bother you then you can increase it by 25 mg every couple days until you find the dose that works for you.
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