Gabapentin/Pregabalin

[Maximus01]

Gabapentin and Pregabalin seemed to help me at first. I was getting more stretches of sleep. Then I experienced side effects that worried me. I decided to at least go down on the Gabapentin---from 1500 to 1200 to 900. I have shared about this before. Now I have had the worst sleep and every morning I am not sure I am going to make it through the day. I am going to see my sleep doctor, but it will be two months of waiting, They are so busy. In the meantime, I have gone up again and took 1200 last night. Got a little more sleep for which I am grateful. The PLMD doesn't seem to benefit too much, because I see the bed cover hanging way down from the bed. But it does make me groggy enough for sleep. There is no way i can win this battle. (I just wanted to rant and rave a bit to feel better!!)

[SueJohnson]

Have you had your ferritin checked?

[Maximus01 in reply to SueJohnson]

Thanks, Sue. I am seeing my GP this Wednesday and will also be doing the yearly blood screening. This will show what my iron level looks like. I also have a telemed visit with the sleep doctor on Friday. A question about the gentle iron: I have been taking this for a while now and notice lately that my stool is very loose (sorry, this is kind of too descriptive). Is this something that could be caused by the gentle iron? I just cannot figure this out.

[SueJohnson in reply to Maximus01]

Yes That is possible since it is usually recommended if your have constipation. You might want to switch to 325 mg ferrous sulfate.

[SueJohnson in reply to Maximus01]

You probably already know this but ask 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 as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100.

[Maximus01 in reply to SueJohnson]

Thank you so much, Sue. I appreciate your advice.

[Daewood1949 in reply to SueJohnson]

Sometimes people forget to stop taking iron supplements 48 hours before the test. So glad you brought this up Sue

[Nikos64]

For me both of these drugs are useless for RLS. The only thing I got out of them was weight gain. I even tried gabapentin enacarbil. Also useless !

[grassgree]

You're not taking both gabapentin and pregabalin, are you? That would be too much.

Lowering the dose of either one of those drugs can cause insomnia. I would ask the doctor if there's something you can take for a few weeks to get you through. Don't stay on any sleep medication too long, it will only make things worse again.

[grassgree]

Forgot to mention--if you can obtain Delta 8 THC, that might help with sleep.

[grassgree]

Do you live in the UK? I'm not sure what is available there. In the US it varies by state. It is legal without a prescription in my state, although marijuana is not.

[dklohrey]

Have tried both gabapentin and pregabalin after having using ropinirole for many years. I have settled on pregabalin though it is hardly a good solution. I take 150mg around 6 pm and the other 150mg tablet just before bedtime. I usually get about 3 good hours of sleep, wake up for 30-45 minutes, go back to bed and get another 2-3 hours of sleep. I wake up groggy, taking about two - three hours before I feel somewhat normal. Fortunately I am retired. I don't know how anyone could work under these conditions. I started to get rls in my 40's and ropinirole worked wonderfully for me for about 20 years. I was lucky. It got me into retirement. Good luck on this adventure. By the way, just a couple of tips that you probably already know. If I drive for a number of hours, rls can creep into my legs. If I use a pillow allowing my hips to be elevated above my knees, the sensation goes away (takes pressure off of the spine). Eat nothing after dinner and limit your dinner to smaller amounts. Will help with your sleep. Join a yoga class. I happened to go to a physical therapist for another issue and she noted that I had extremely tight hamstrings. Loosening those up will help. Being a guy, its a little intimidating being in a yoga class which is usually filled with women who seemed to be able to contort themselves in any number of positions but I tried to focus on the 92 year old guy in front of me. Compared to him I wasn't bad.

[SueJohnson in reply to dklohrey]

Since the pregabalin isn't completely controlling your symptoms you may not be taking enough. Ask for 25 mg capsules and increase every couple of days until they control your symptoms You can take up to 450 mg, Also there is no need to divide the doses. You can take it all at once and it is best taken 1 to 2 hours before bedtime.

[dklohrey in reply to SueJohnson]

Thank you!!

[SueJohnson]

Did you mean 50/50 chance that raising your ferritin over 100 will help with one's symptoms? Because that is not quite right. According to the Mayo Clinic Updated Algorithm on RLS 60% will have their symptoms improved.

[Nikos64]

For the past 8y I was on Tramadol 100mg at night which worked great. However, my doctor retired and my current doctor thought it would be in my best interest to be on Horizant and cut me off the Tramadol. Needless to say I went thru withdrawal and was miserable for a month. On the other hand it was good not to be on it bc it had some annoying side effects. I’ve been off Tramadol for 2mo and my RLS is still bad, but I can’t blame Tramadol withdrawal anymore. Quite frankly all the drug solutions have negatives. Gabapentin/Horizant has the least but also doesn’t work for me. Not sure what I will do at this point. A possibility I’m considering is medical marijuana but that too has bad side effects. So for now I’m on a holding pattern until I make up my mind. Although Tramadol is probably the most effective for RLS -at least for me- I would urge you to consider it as a drug of very last resort.

You will get some great relief from hot tub and/or a heating pad. The former is really awesome … just be careful not to fall asleep in one.

Good luck!!!!

[Trooper2017]

I take 1200 mg of Horizant at dinner and 3 mg of Ropinirole at 9:00 P.M. sleep like a baby again. Don’t know how long it will last but had only about 3 hours of sleep before.