Vimpat is working for severe RLS and PLMD

[SleeplessinNC]

I’ve had almost complete resolution of my RLS on Vimpat (lacosamide) now at 150 mg at 10 am and 10 pm. This is a remarkable turnaround in my symptoms. I started on 50 twice a day and the effect started to wane with a tolerable amount of breakthrough RLS. I increased to 100 twice a day after several weeks, then up to 150 twice a day. My neurologist says the max dose is 200 twice a day. Not sure where I will land on dosing or how long this will last but I’m sharing for anyone else who is considering Vimpat. This has given me a real reprieve in combination with iron infusion.

[SueJohnson]

That's great. So pleased for you !

[SleeplessinNC in reply to SueJohnson]

Thank you for your continued support and advice. It is much appreciated.

[Joolsg]

That is great to hear. I've not yet heard of anyone else on Vimpat. It's an epilepsy drug, but a different class than pregabalin and gabapentin.

[SleeplessinNC in reply to Joolsg]

My understanding is that Vimpat works on sodium channels in the brain not as a dopamine agonist. Brain chemistry is complex and a fuller explanation isn’t within my understanding. I’ve been through so many medication trials and failures that this has finally given me a break, affordably and with little side effects. And my neurologist can check blood levels to make sure I’m at a therapeutic dose. Thanks.

[Joolsg in reply to SleeplessinNC]

It is another med to add to the list. As pregabalin and gabapentin work well for many RLS patients, another anti epilepsy drug is good to know about.

[Leeserann]

Thank you for sharing this! I also have severe RLS & PLMD. I'm on my 2nd week of weaning off the pramipexole. Do you know if I have to fully wean off it to go on the Vimpat? I just don't know how I'm going to make it through the next 5 weeks without something to control the kicking. I have to work! I have to sleep. This is insane!

[SleeplessinNC in reply to Leeserann]

I went through similar serious withdrawal. At its peak, there were times my husband had to pull the car over and let me out because of the kicking. No one could possibly sleep in the same bed. I had very dark thoughts, nausea, lost 20+ pounds. I’m so sorry. I don’t know of any solutions — just fought my way through. It took me from January through April to wean off. I was on prami 2 mg for about seven years. The last year or so was in augmentation— I just didn’t recognize what was happening. I didn’t discover the Vimpat until recently and spent the last couple of years trying various meds and treatments. Do you have a good neurologist? They should be familiar with both drugs. I’ll send good vibes.

[Leeserann in reply to SleeplessinNC]

Thank you so much. Yeah, it sounds like hell. The damn pandemic - I moved like 5 times traveling as a nurses aide on the Covid Halls. I eventually was recruited to a desk job an hour and a half from my former doctors and am starting all over again with garbage insurance. So I'm having to figure this stuff out on my own because there's no way I can afford the care I'd need. Such a bizarre, miserable set of disorders, isn't it? Do you find that certain things like heat or sugar intake make it worse? Did you try the gabapentin or pregabalin? If so, what were the results. If I'm going to stop the pramipexole, I want to switch to the one that seems best. Not everyone who has this has it severe as we do. Not everyone with RLS has been told they also have PLMD. Not everyone has breakthrough episodes during the day. So I'm trying to find what is going to fit for me because my new doctor seems clueless.

[707twitcher]

Found this small study (Portugal 2013) - quite successful results using it for RLS:

sciencedirect.com/science/a...

[Leeserann in reply to 707twitcher]

Thank you!!

[Leeserann]

Pramipexole, lisinopril and metoprolol.

[SueJohnson in reply to Leeserann]

The metoprolol makes RLS worse for many. I may have told you this before.

[Leeserann in reply to SueJohnson]

Of course. Logic says that's what they'd put me on! Is there are recommended alternative do you know?

[SueJohnson in reply to Leeserann]

I replied to you before but glad to repeat it. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor.

[Leeserann in reply to SueJohnson]

I'm so sorry. I must have missed that post. Thank you so much for your time and assistance. GREATLY appreciated!