This is insanity to continue with this. Doctors will immediately put you on Pramipexole, a drug that they know will eventually not work, after some time, making you go through miserable withdrawals. They throw darts at a board and choose from any number of drugs to experiment on you. (The world spends gazillions of dollars on finding a cure for ED or obesity, two trendy afflictions, but will spend nothing on research for this barbaric, cruel, and debilitating curse? ). This is night four of twitching, jerking, sleepwalking, falling, and mental anguish. It has taken me about 20 minutes to write this far because I can't sit long enough to complete one sentence without hitting the wrong keys before I have to jump up and walk for a period. It seems that all I've accomplished on this website, and other sites, is a pathway deeper into this morass of witchcraft. I, that's me, a person, a real person with a real condition is left to fend for themselves, among other misguided, medically untrained persons to find something that can be "lived with" as an answer to this? I was guided, led, taken by the hand, promised, and persuaded that Gabapentin was THE cure and that I would be a fool to listen to my primary doctor. I waited and suffered, like everyone else, for the final days of the cursed withdrawals to end, and the answer to all this time of suffering would be over with and become a bad memory. Like a child, I anticipated the arrival of my promised new pony and when the day arrived I was handed a horse ridden by Hades.
Gabapentin and sleepwalking - Restless Legs Syn...
Gabapentin and sleepwalking
Bloodhound- withdrawal symptoms last a MINIMUM of 4 weeks and up to a year. That's why we caution against Dopamine Agonists. They cause brain damage and doctors fail to realise the extent of the damage.
It is VERY early days for you. There is no quick fix.
Like you, I had a brutal, torturous withdrawal and it took at least 6 months for symptoms to settle.
Gabapentin didn't work for me. It often does not work for patients who have augmented on DAs.
Be patient- and if your symptoms do not settle within 2 or 3 months- you will need to kick up a big fuss with your VA medics and insist they follow the Mayo Clinic Algorithm and the new guidance from the AASM.
They will need to look at Dr Winkelman's opioid study - Massachussetts hospital- which proves that low dose opioids are highly effective and do not cause addiction ( unless there's a history of abuse) OR tolerance.
Your correspondence shows the frustrations on this topic. From what I recall, I needed to get off of Pramipexole as it was augmenting and causing grief. Many, many people were saying not to go onto Rotigotine or Ropinirole, one of which was picked by my Primary, and that I should strong-arm her into getting Gabapentin or Pregabalin. The V.A. only came up with Gabapentin. Great! Then you say that she was weaning too fast. Then you said she prescribed too much for my age bracket. Fine! I was of the impression that no matter how she did it once I tapered to zero Pramipexole and started on Gabapentin the road ahead would be smoother. NOW you tell me that people who were on a DA that Gabapentin seldom works. Then, why am I doing this Gaba? Only to fail and continue with this awful thing? BTW! As I explained before, the V.A. does not distribute opioids, whatever their station is regarding any problem you may have that would require such. I'll keep suffering and not say any more about it then.
This website follows the latest research and studies. Namely the Mayo Clinic Algorithm and the AASM.Dopamine Agonists are no longer first line treatment and the new AASM guidance relegates them to 'end of life scenarios'.
I didn't say Gabapentin 'seldom' works. I said it often doesn't work after augmentation on a DA. Studies suggest this is because dopamine agonists cause permanent damage to dopamine receptors. It didn't work for me.
But it covers SueJohnson and many other people on this forum.
But, that's irrelevant because you are under VA care and can only be given gabapentin.
And as stated, the Mayo algorithm says anyone over 65 should start on 100mg gabapentin and titrate up slowly. That's why I mentioned your doctor should have started you on a lower dose.
The road ahead will be smoother than the intense, increased RLS from augmentation. But first you have to get through the withdrawal stage. That takes time.
Read any of my posts/replies and I am brutally honest about the withdrawal process. It is hellish. I nearly didn't make it through. It was absolutely horrendous and I am grateful my husband stayed up with me for 3 nights. Otherwise, I may well have thrown myself out of the window.
So most people helping you have been in your situation.
All I am saying is that you are still in the early stages of withdrawal. It will be brutal for at least a month after you stop Pramipexole.
But then, with each day, your symptoms will settle and your RLS will slowly improve and the gabapentin will hopefully start to cover your RLS.
If after 3 months you are still struggling - then you may have to find a new doctor. One who can work according to the Mayo algorithm.
But whatever you do- never touch dopamine agonists again as the severe, intense RLS will start again very quickly. Augmentation is insidious.
It's frustrating that the VA will not follow the latest US research and treatment for refractory RLS.
I wish you strength over the next 3 weeks as you get through the withdrawal.
You describe what I saw a friend go through in 2023 and early 2024. Don’t be discouraged. My friend jerked violently during his sleep. His family and I made sure he was not alone during the night because he would walk to stop the leg movement but was so exhausted from nights of being unable to sleep …..all while trying to work 30hrs per week. It was as if his upper body tried desperately to sleep as his lower body ran a marathon. Prior to the start of weaning off dopamine agonists, the movements appeared earlier in the day and extended to his arms and upper body. He couldn’t tolerate car rides nor could he drive because of the need to move…to walk. The thought of attempting to go to bed at night brought on anxiety. He had to move from his bed to the floor (fall prevention) and pad all the furniture to keep from hurting himself as he thrashed about. It wasn’t pretty. It was horrible. I became his advocate. Luckily, after presenting the Mayo guidelines to his PCP, the doctor prescribed hydrocodone due to my friend noticing improvement of his symptoms when he had a cold and was prescribed Hycodan. Eventually, the hydrocodone became ineffective. He saw a sleep specialist who prescribed buprenorphine. His legs have not moved since. By the way, prior to prescribing hydrocodone, gabapentin was ordered 600mg at 4 and 2 hours prior to bedtime. It did nothing except cause sedation, fatigue the following day and weight gain. Today he is much improved. He still has a few issues but no restless legs or periodic leg movements. After weaning off the dopamine agonists, he experienced depression. He’s seeing a therapist. As others have said, and from what I’ve read on the forum, each person’s experience is a different. Be encouraged. I’ve gone to all my friend’s doctor’s appointments since Nov 2023. I’ve read as much as I can about current RLS therapy and sought advice from others on this forum. It all helped to get my friend out of a desperate situation. Are you able to be seen at a VA connected to a medical college that might be more current in the treatment of RLS?
Thank you for this report about your friend. We sufferers sure could use more friends like yourself. I have been sleepwalking for about four nights now, and as I am taking care of my elderly wife, I have no assistance for my problems. I have met many walls and doorframes and occasionally a floor. What I have decided, for the immediate future, is to lock my bedroom door and put as much padding around as possible, along with sleeping on the floor, as you mentioned, thanks for that. I have just started taking the 300mg of Gabapentin so I was thinking maybe it was a temporary side effect. I assumed it was from being over-tired from weeks of partial and no sleep. I would like to NOT have to keep changing meds for this illness. From what I gather here, I should be taking buprenorphine instead. As I sit here typing this I am thinking to myself that I have not been able to sit longer than five or ten minutes at a desk until yesterday. I attribute that to my change to Gabapentin from Pramipexole. Let's hope that this sleepwalking will pass. I appreciate the time and effort you have taken to assist, validate, and document the trials that RLS sufferers go through. That is a noble and valent venture for which there should be awards and rewards.
My experiences on the effects of; lifestyle changes, supplements and drugs while trying to combat RLS.
Worries about Gabapentin 
Gabapentin increase
