My husband has suffered from RLS for 30 years. A few years ago, he started on Mirapex which did wonders at the time. It started to augment this spring, even causing him to fall asleep in an instant when driving. Withdrawal was a nightmare.
Since mid-July, he's been on 600 mg. Gabapentin, taken at 6 p.m. & 150 mg. Feramax taken with vitamin C at noon. (Blood test Aug. showed Ferratin level of 64, started Ferratin then) This is helping the RLS, but he now has severe insomnia. Tried Levodopa but it didn't help with sleeping. Since mid-Sept he has been on 25 mg. Trazodone for insomnia taken at 7 p.m. which he has slowly increased to 50 mg. in the past two weeks.
Bottom line: RLS somewhat under control, but insomnia is killing him. I have kept a drug/exercise/food/sleep chart since July 1. Last week he had 25 hours/sleep. That is an average of 3.5 hours/night. The best he's had was 31 hours in a week. He does not drink coffee or alcohol.
We are hoping to have another blood test this month to see if iron levels have improved. We are in Cobourg, Ontario, Canada and having a difficult time getting referred to a neurologist.
Any advise the group has will be welcome. And, thank you for being there; it means a lot to us.
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DreamerTED
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Hi, a slight correction, sudden daytime drowsiness is a side effectr of Mirapexin, but it isn't augmentation, that's different. Still a good idea to stop the mirapexin however.
Please give more detail about the insomnia.
Does his insomnia consist of not being able to get to sleep, getting to sleep but waking up early or both?
Is the insomnia due to RLS symptoms or does it occur without any symptoms?
One of the effects of gabapentin, usually is to help sleep, not worsen it.
The recommended time to take gabapentin is 2 hours before bedtime, so unless he goes to bed at 8pm taking it at 6pm doesn't sound a good idea. He could try taking it later.
Also in relation to gabapentin 600mg is below the usual dose neccessary for good effect. 900mg is more typical and many people need between 1200 and 1800mg. He could try increasing the dose.
Levodopa taken regularly will VERY quickly cause augmentation.
Trazadone is used for insomnia, but it's actually an antidepressant. It may be that some other sleeping aid might be more effective, e'g' clonazepam or zopiclone - at least short term.
A ferritin level of 100 can benefit 50% of people with their RLS generally. Not 100%.
Ferritin is a protein/iron molecule found in the body. Feramax is a brand of oral iron. If ferritin levels are below 75 then an oral iron supplment can help raise it. However, I suspect that feramax is not a particular good supplement to take.
The main reason I have for saying this is that I believe the dose is 150mg.
The explanation for this is a long winded so please excuse me for simply saying the MORE iron you take the LESS you absorb. Hence it's not a good idea to taker doses of iron above 60mg, less than half of that in feramax.
Otherwise the amount of rion taking is not that improtant, what is important is how much is absorbed.
Other ways of increasingniron absorption.
Yes, vitamin C orange or folic acid taken a the same time.
Avoid taking any antacid or magensium at the same time.
Take it at least one hour before or at least 2 hours after eating.
Take it later in the evening NOT noon.
Only take it once every TWO days i.e. bi-daily NOT daily.
This can increase absorption up to 50%.
Ferrous bisglycinate may be better (gentle iron).
Also consider that the insomnia might not be entirely due to RLS. The prevalence of insomnia is much higher than the prevalence of RLS. That means most people with insomnia don't have RLS.
There may be other factors affecting the insomnia e.g. obstructive sleep apnoea or other sleep related disorders.
Re: insomnia. For his adult life, he has needed only 7 hours sleep/night.
It seems that this dose of Gabapentin (600 mg) is doing the job to calm his legs down.
Previous to taking it he would be unable to sit in a chair after 8 p.m. He would have to stand and continuously move until around 9 and then couldn't take that any longer and would go to bed where he would twist and turn and get up every 15 minutes until 2 a.m. and then maybe get 2-4 hours' sleep.
After being on Gabapentin for 3 weeks, a lot of the restless legs discomfort went away. He is now able to stay up until 10 without legs bothering him. But, when he goes to bed, he will be wide awake until 4 a.m. and then have a few hours/sleep if lucky. Not much twisting & turning of legs. Oct. 31 he had 1 hour/sleep, Nov. 1 - 4 hours and last night 2 ½ hours. He has sat in his chair all day, super tired, but can't sleep. This is a man who normally does a lot of physical work.
A few days ago he started taking the iron every other day. He does not take magnesium near when he takes the iron. Tomorrow he will take the iron in the evening as you suggest. We will look into the Ferrous bisglycinate as well.
Hope that answers your questions and again, thank you.
Would his dr give him a trial of clonazepam?Once my legs have finally settled at night a clonazepam usually knocks me out for 4 hrs. I get up, walk around then back to sleep
I have found that taking a good dose of the antioxidant amino acid taurine late afternoon 1500 mg plus another 1000 at night along with 500 mg GABA and 500mg l-theanine and two herbal (non histamine) over the counter sleeping tablets helps with insomnia and feelings of hyperarousal. These are all harmless. They don’t have much effect on legs but dramatically increase relaxation and sleepiness.
Hello DreamerTED , Boy I know this story well. I tried Trazodone, Clozipam, Ambien. all sorts of tranquilizers and nothing worked. It does take time.
So my first thought, is find something to do at night that doesn't require thought. I did the dishes, cleaned the kitchen and did lots of laundry.
I recommend a sleep tracker. I use a fitbit to keep track of my sleep. Since January, I have add TWO WHOLE hours to my average nights sleep. Granted, I am not quite up to 6 hours.
What helped me? The Taurine suggestion above I believe helped. I take 3-4 grams of taurine around bedtime on an empty stomach.
Now, since I have digestions issues, I take iron as well and my Vitamin D was low. So I added Vitamin D once a day with a fatty meal. Vitamin D helps iron absorption, more specifically it block hepcidin which blocks iron absorption.
Finally, and I really believe this helped me. Homemade Kefir. It is great for the gut microbiome and loaded with trillions of CFU's (Colony forming units).
Both the taurine and Kefir take time. Everything takes time with RLS. It took at least a month, if not two full months to realize that this was definitely working.
Finally, when things get tough. Have you tried 400-600mg of Ibuprofen? It really does help me. It certainly prolongs my sleep, I even notice on the sleep tracker. I mark those days.
Thanks for your interest, LonePine. The big change has been taking the iron every other day. That may be helping. He slept 6, 4.5, 4 and 5 hours in the last four nights. Not continuous, of course, but much better than previous nights. Even with that amount of sleep, it has changed his outlook on life.
Nice improvement! I need to take 1 or 2 capsules of the ferrous bisglycinate EVERY night about an hour before bed. Otherwise no sleep. I wish you continued success.
If your husband got relief from taking iron it wasn’t due to raising his ferritin, clearly, based on his recent blood work. It was due to that “immediate effect” of having more unbound serum iron in his body. Once it gets stored it’s useless to us…so I believe. I believe that we with RLS just need a little extra iron in our bloodstream at night to relieve our RLS. I believe the reason RLS tends to be a condition of the night is because Mother Nature has seen fit to sequester away a good portion of that free-floating serum iron by nightfall. The non-RLS world is not bothered by this drop, however, we are.
Update: Results of blood test and ferritin level is 47! It was 64 three months ago. Not good. He was taking 150 mg ferrous polysaccharide daily and changed to every other day for the last 14 days based on recommendations above.
He is now seriously looking into which is the best brand of ferrous bisglycinate to buy here in Canada.
Recommendations for best brand of ferrous bisglycinate in Canada would be welcome.
Gentle Iron by Solgar is a good choice for ferrous bisglycinate. Look at my profile page for how I take it. There are two trains of thought regarding iron - mine and everyone else on here. I think iron has an immediate (even same day) effect on RLS if taken at the right time of day, in sufficient quantity and in the bisglycinate form. As long as your ferritin is in the normal range (preferably not below 50) I see no reason to work to raise it. That’s me, that’s what I think. See my last response on my profile page to Cather. She has gotten immediate relief from iron.
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