Gabapentin no longer working...

[Goodnightangel01]

Hi! I'm new to this community and boy am I glad I've found you!!

I have been on Neurontin (Gabapentin) for over a year but about three or so months ago it stopped working. Now my restlessness (which is also in my lower and middle back as well as my legs) is extremely intense. It pretty much lasts all day and into the night. The only time I get some relief is when I take my Xyrem (I also have narcolepsy) but it tends to flare again once the Xyrem wears off. My neurologist had me try Requip but that made me feel SUPER anxious and so I had to discontinue it. He then prescribed Vicodin but that didn't do much for me. When I was out of the Vicodin, I had some Percocet left over after an ER visit so I thought I would give that a try and that actually worked! I couldn't believe it! Unfortunately I didn't have many of them left, so I am back to an almost constant state of restlessness. I am about to lose my dang mind, I swear.

I have tried a million other things to help ease symptoms. For example, I drink Natural Calm every night before bed (which is magnesium citrate in powder form which you add water to), I will do an Epsom salt or magnesium oil foot soak, I put magnesium oil and lotion on my feet, legs and back, I will sometimes use my TENS unit but that does not always work, and I will massage my legs, back and feet with an electrical massager every night before bed. Once I take my Xyrem I don't notics the restlessness, but when it wears off it hits me like a brick wall and I'm awake and miserable around 4 am every morning just waiting for my alarm to go off at 6 am.

I have heard that Klonipin has helped some people, and I have also heard mention of Lyrica. What have you all found helpful? I thank my wonderful mother for passing this lovely trait to me, but she seems to have a much easier time managing it with Natural Calm and ibuprofen. I'm not sure why mine has intensified so much in the last three to four months. It had never been like this before. My neurologist says that RLS is a complicated syndrome because it goes in phases and it's hard to tell what triggers the phases.

I know that because of the complexity of this syndrome what works for one doesn't work for all, but I would still love to hear what works for you!

Thank you!!

[Polar Bear]

Welcome to the board. We are sorry that the gabapentin and the ropinerole have not worked for you. Most of us have been through the journey of trying several/many medications and often finding success with a 'cocktail.'

Am I understanding correctly that at present you are not taking any specific prescribed medication for your WED/RLS symptoms and are getting by with the over the counter and self help methods. It is very difficult. TENS didn't work for me either, but there are sufferers who do find it helps.

You have already found that perocet works for you.

How cooperative is your neurologist. This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. Dr Buchfuhrer is the Dr B who you may find referred to in many threads.
This is my bible, full of notes, and pencil notations.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Sometimes getting the ferritin raised can help our symptoms.

[Goodnightangel01]

Thank you! I will definitely look into the book you suggested.

Actually, I am still taking the Gabapentin, but only 300 mg per night because sometimes I do ok, and sometimes nothing touches the miserable feeling. My neurologist wanted me to continue taking the Gabapentin and also continue to do the nightly massages, showing me an acupressure point on each shin that is supposed to be helpful with RLS. The last time I saw him he also did some acupuncture, but I have no idea if it helped or not since the severity of my RLS goes in phases and shortly after seeing him I had a pretty good stretch. Maybe the acupuncture worked, maybe not, who knows.

When I called to talk to my neuro today he had already left for the day (at 1:00 pm) so I will have to call on Monday to talk to him about other options.

As for ferritin levels, when I had my last blood test, it came back abnormally high. 318 ug/L when the normal range is 15-150 ug/L. The iron levels were weird too and it wasn't described well to me, so I am not entirely sure what it all means. Unsaturated Iron Binding Capacity was high at 351 ug/dL (normal range is 112-346), my Total Iron Binding Capacity was high at 414 ug/dL (normal range is 100-400) but my % Saturation was low at 15% (normal range is 20-50%). They told me to stop taking my iron supplement since I was also taking a multivitamin and the high levels were concerning, yet I have no idea why the saturation would be so low.

So, until I can talk with my neurologist on Monday, I am trying my best to hang in there over the weekend. I am absolutely exhausted today because I had to get up at 6 am but was restless since 4 am and wasn't able to sleep until 2:30 am. Yuck! Lol

Let me know if you can make sense of the iron and ferritin levels and why my saturation was so low. If not, I have a new primary care doctor I am seeing this week and can ask her to explain it to me.

Thanks again!

[Polar Bear]

I think I recall another member who had high ferritin.
I can't help you with the breakdown of your ferritin test results but there are others here on the Board who will, I think, be able to explain it to you.
Others have posted about acupuncture, didn't help me, sometimes I think there is also a placebo effect - it did not benefit me, but I am rather sceptical.

A shame that you didn't get to speak with your neuro.

[jul2873]

I use kratom, which has the properties of a mild opioid. It is legal in all but Indiana, I think, although some other states restrict it to buyers over 18. The best place to get it is on the Internet. There are many good places to buy it but the two I have personal experience with are Kratom Therapy, and Velvet Soul Naturals. You have to put "red leaf" into the search box on Velvet Soul, and many of the red leaf varieties (the best for chronic pain and sedation) come up. Personally I've had the best luck with Red Leaf Borneo.

I put 1-2 grams (which is about a half to a whole tsp.) into a little container of orange juice, and let it sit for at least twenty minutes. Kratom is a powdered leaf, that is not water soluable, but does dissolve in acid. Orange juice is apparently acidic enough that it dissolves it. I make up a tray of these cups and put them in the refrigerator until I need them. One cup is one dose.

I've used it for almost two years, every day, and it has been wonderful for me. I usually take 5-6 doses over a 24 hour period, and that almost completely manages the symptoms for me. I do wake up at night after a couple of hours, often, and have to take another dose. I flew across country yesterday, and by taking a dose every two hours was comfortable for the whole flight. A miracle!

I did just have a physical, and everything is normal, including all the liver panels. I get a little constipation sometimes but some extra magnesium takes care of that. Otherwise, I have no side effects, as long as I drink a good deal of water. Otherwise, I get a headache.

Good luck. I hope you find something that works. Like you, I tried all of the over the counter aides first. I'm just way past them now.

[ViewsAskew]

In terms of prescription options, 300 mg of gabapentin is considered a low dose. If I remember correctly (and I do not have my book open - the one recommended above - so this could be off) a dose can range form 100 to 900 mg, up to 3 times per day. So, at 300, you could take a LOT more. You may find that helpful.

You also may find that you do not metabolize this drug as well as you could. If that is the case, gabapentin encarbil may be a better drug for you. Same class, similar drug, but metabolized better. Lyrica is in the same family, it could work, too.

It's not at all surprising that an opioid worked. But, hard to get it prescribed in many places. Especially if you haven't tried the other drugs yet. Tramadol might work and may be easier to get from a doctor. It definitely can cause you to become dependent on it - if you stop it abruptly, you may get sick. So, just know that and taper slowly if you need to stop.

I'd put any of the benzodiazepines to the bottom of the list - including clonazepam. The other drugs are much more likely to work and to cause fewer problems down the line.

You tried ropinerole. There are two others in that class, pramipexole and rotigotine. Worth trying, especially since your iron is high. That said, I'd highly suggest anyone taking any drug in this class to watch carefully for any signs the disease is getting worse and, whether it's getting worse or not, take a break from it now and then.