Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.
Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
I recently (2 months ago) weaned off of 300 -400 mgs of Gabapentin that I had been taking for about 3 years. It helped marginally, but I didn’t like the side effects I was having. Anyway…since I weaned off, my RLS has skyrocketed!! I can’t sit still for one minute, day or night, I’m getting up 2-3 times during the night, and it’s in my legs, torso & arms. I paired the Gab with Kratom and the 2 together helped a lot. Now I just use Kratom and cannabis to get me somewhat through the night. What is going on???anybody have ideas? Thanks for your feedback.
I'm so sorry you're having this experience. I am interested to hear it, though.
I came off gabapentin and had dreadful symptoms (they eventually lessened). I was certain that withdrawal from gabapentin was causing the symptoms, but I probably could not have convinced anyone of that, because I was also reducing opioids at the same time. I had 5 mg oxycodone to replace 90-120 mg codeine, so I was taking roughly a third of what I had been taking in morphine equivalents. Opioid withdrawal is remarkably similar to bad WED/RLS symptoms, but it tends also to include nausea, which I did not have.
I was convinced it was gabapentin withdrawal. That's why I'm interested to hear that you've, sadly, had the same kind of withdrawal from gabapentin. Since you didn't stop kratom, no one can say you were experiencing opioid withdrawal. It would seem that gabapentin withdrawal, consisting of worsened WED/RLS, is a real thing.
I would guess that the wild insane WED/RLS will calm down after a time. (If it doesn't, then it's your baseline level of symptoms and not a withdrawal thing). Meanwhile, it would be humane for someone to prescribe you a potent opioid.
Once the withdrawal is over, you will likely need something for long-term treatment of symptoms. Before anyone convinces you to take a dopamine agonist, please get your iron status checked. Avoid the DAs (ropinirole/Requip, pramipexole/Mirapex, retigotine/Neupro patch) util your serum ferritin is over 100. You should actually get your iron checked immediately if you haven't had it done in the last 6 months.
It is quite possible for a person to experience such a large relief, simply by raising her iron stores (expressed as serum ferritin), that medications are no longer needed, though it is more common for medications to be reduced, not eliminated.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Thank you for your thoughts. I’ve been on Ropinerole in the past and no one will ever convince me to use a DA again. I started augmenting within the first 5 months and the other side effects were awful. Nor do I want to become an opioid addict! I have had my iron checked in the past and was always told that my iron levels were fine. It seems that primary care doctors just do a basic screening and don’t dig deeper, often missing underlying issues. Is there a specific test that will give all the necessary information about my iron stores?
You need to know what your Ferritin Serum level is. An ordinary blood panel may well show that your iron levels are 'fine' but they do not normally test for your Ferritin Serum. Also a 'normal' Ferritin Serum level may be considered ok but not so for us sufferers of RLS. We want it to be over 100.
You should ask your GP to do a Ferritin Serum check and ask for the number when you get your result. Don't accept being told that it is OK.
I agree with Polar Bear--a full iron panel is essential for RLS. I get checked every six months. My Johns Hopkins doc provides iron infusion approximately every 2.5 years, based on the iron panel results.
Back to the subject of the initial posting--gabapentin does have side effects. For me it is "fog brain" in the morning and decreased sense of balance. Even so, I continue to take 1800mg every evening. I think I will be on this stuff for the rest of my life, so maybe I will have to suffer the withdrawal.
Thanks so much for the clear information regarding testing for iron. Now I know what to ask for and what to look for. And yes, the morning brain fog just got to be too much for me to take. It was adding to the depression I already deal with. Can’t imagine what the brain fog would be like at 1800mg!
Thanks so much for the clear information regarding testing for iron. Now I know what to ask for and what to look for. And yes, the morning brain fog just got to be too much for me to take. It was adding to the depression I already deal with. Can’t imagine what the brain fog would be like at 1800mg!
I take 3000 mg of gabapentin in the evening and the morning fogginess is handle well with 2 cups of coffee. Occasionally I wake up early with leg movements and the evenings are not all that comfortable (lately) but the fogginess doesn't bother me.
I can’t sit still for one minute, day or night, I’m getting up 2-3 times during the night, and it’s in my legs, torso & arms. I paired the Gab with Kratom and the 2 together helped a lot. Now I just use Kratom and cannabis to get me somewhat through the night. What is going on???anybody have ideas? Thanks for your feedback.