Zonisamide? For RLS??

[HeBgBgirl]

Hi Friends I am curious to know if anyone has ever heard of Zonisamide for RLS? My Neuro wanted me to switch to it because I told her I most nights I only take 1/2 or less of my .5 pramipexole tablet. I’ve been taking for years but I feel in the last year or so I get augmentation. So this RX is her solution!!?? I looked it up and it is NOT a solution!! I am really annoyed to she even suggested this and called in script! I am in a very crappy situation with this Dr here in USA . Because she prescribes oxy .10 monthly for me. I’ll try to explain in a nutshell!! Our insurance has 2 tiers this Dr is tier 2 which means more out of pocket for me until I reach deductible. $150 per visit!! However, I don’t have to physically go to office. She does a telehealth/phone visit every 3 months. Then the months in between I just call for refills. I don’t understand how she does this bc I was always under impression that u had to go in every month. Anyway, my problem is that it’s super difficult to find a doctor here who will prescribe the pain meds for my RLS. Which btw I’ve been on since 2004!! A lot of those years were a lot higher doses. Those days I didn’t even know I had RLS!! Yup!! It basically disappeared!! Fast forward I was forced by another Dr who just dropped me by making up a BS about my urine test!! She just wasn’t making $$ with me bc I won’t let her give me any injections!! A story for another post!! It’s a doozy!! Sorry I’m all over the place!! But unfortunately here in good ole America it has become nearly impossible to find a doctor to help and prescribe pain meds, even if you have major surgery!! It has become a serious problem here for many people!! Again a post for another day!! So basically I’m on 800mg Gabapentin 4/5 x a day!!! The oxy 4x as needed and I’m always running out! I also need for pain in spine especially SI area. Diclofenac for inflammation. And finally the pramipexole!! My RLS is all over the place since coming down from pain meds a year ago in November. It is painful 😣 and eradicate!!

This doctor rushes my “phone “ appointment all the time so I feel I can’t get her to really listen to my issues!! So my point is I can’t just up and leave her and I can’t find another doctor to help me with both RLS and painful RLS and pain from other issues!! Hope this makes sense. I don’t get a real good night’s sleep so hard to think 🤔 hard to concentrate and well I guess you can get what I’m trying to relay to all of you!!?? I hope. Back to Zonisamide…. This drug is not good for RLS nor is it good for you. Side effects are not good. Look forward to everyone’s thoughts. Even on my writing skills!! Lololol

[SueJohnson]

Zonisamide can make RLS worse. ncbi.nlm.nih.gov/pmc/articl...

[Joolsg]

I agree with SueJohnson. It worsens RLS.You need to consider getting off the Pramipexole now. Go slowly and follow the withdrawal schedule set out at

rls-uk.org/useful-resources

The new American Academy of Sleep Medicine Guidance has just been released

scholar.google.com/scholar_...

And all dopamine agonists are NOT Recommended. They all cause augmentation.

Once off Pramipexole, the gabapentin and Oxycontin you take for spinal pain should cover the RLS.

Alternatively, you might be able to find a doctor who can prescribe methadone or Buprenorphine which would help both the pain and the RLS.

Do join rls.org as they have local help groups and can direct you to a Centre of Excellence and a good doctor.

[SueJohnson]

Tell me what city and state you live in and I may be able to give you the name of a knowledgeable doctor.

[SueJohnson]

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .125 tablet (ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your oxycodone temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled which is why it isn't helping you now. After you are off pramipexole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."

Also once you are off pramipexole and your symptoms have settled you will only need to take it at night.

You said your ferritin was normal but what is normal for others is not normal for those of us with RLS. So ask what it was. It needs to be over 100 and preferably 200 or more. If it is not, reply back here and I can give you some advice.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...