Parkinson

[auldreekie18]

I now have Parkinson as well as restless legs ,am on Levodopa 100mg/5Omg at 11.OO am -3.00pm -7.OOpm -11.OOpm capsules only last 3-4 hours waken at 3.OOam in morning with restless legs on and off till getting up at 8.OOam for breakfast . Consultant phoning this week to see how I am getting on she will have to increase capsule strength and I want to go back on Gabapentin for night time what do you think lovely people ,restless legs worst thing I have ever had and I have been through a lot ,God Bless you all .

[SueJohnson]

Did you get a second opinion on your Parkinson's? I don't see any problem with taking gabapentin in addition to the Levodopa.

[xpatbrat in reply to SueJohnson]

Really from my lack of experience (mine seems "nominal", my heart goes out to you, and all RLS sufferers. What a difficult life. Gaba is supposed to help and i have no experience of the drug, however my wife took it, being warned of its side effects (which doesn't affect all). She soon felt she couldn't concentrate, and was struggling with thinking of the3 words she wanted to say. It really depends on how sensitive to this drug you are. Some are not, but all go with my best wishes, and a few hugs on the way. Take care.

[auldreekie18 in reply to xpatbrat]

Appreciate your kind words same back to you both we can only keep going God Bless .

[auldreekie18 in reply to SueJohnson]

Might have to build up again been off it for a while ,took 1200mg in 2 doses and could hardly stand so dizzy and done nothing for the RLS .

[michou]

gabapentin is just about the only drug that works for RLS without major issues although some people report problems my understanding is that most get on well with it. Not a physician but should be ok with most drugs but check. Getting right dosage is key most people take about 900 mg but I take less & you need to build up to it.

[auldreekie18 in reply to michou]

Thanks for that took 2 600mg of Gabba before bed woke up raging RLS. rest of the night so dizzy could hardly move.

[1kma]

levadopa causes augmentation.

[SueJohnson in reply to 1kma]

But if he has Parkinson's, that is a different case.

[1kma in reply to SueJohnson]

I see. So you are saying that levadopa will treat the Parkinsons without worsening the rls? It is not possible that the that leva could treat Parkinson while simultaneously worse rls?

[SueJohnson in reply to 1kma]

It won't make the RLS worse per se. You were talking about augmentation. I was just saying that the risk of augmentation was probably worth it for treating the Parkinson's. That he shouldn't not not take it because of that risk.

[1kma in reply to SueJohnson]

I would not want to suffer augmentation, and augmentation does make it worse. Some people have rls 24 hour perday and have to eat standing up do these drugs if not taken correctly. From my understanding your are less likely to suffer augmentation if you dont take it everyday.

However, you do raise a very good point. Does the benefits of treating Parkinson with levadopa outway the chances of augmentation in rls? Particularly if there is a way of negating the chances with proper instructions. Since I dont know much about Parkinsons so you are probably right!

[draycott1]

I was prescribed gabapentin 22 years ago as a pain killer following major surgery. I had always had RLS but didn't know it was a recognised condition. Have to say mine was never severe and has not got worse over the years. I did find that taking large daily doses, something like 10 300mg daily for my pain also did away with the RLS. Not surprising really with that kind of dosage which is certainly not recommended. Must admit to having continued with gabapentin daily but no more than 600mg. The long term effects have been to increase my body fat but not my overall weight and I have strangely lost a lot of body hair ie chest and armpits - could this be due to testoserone level being affected?

Best of luck with your treatment - I am 87 and still going strong

Draycott1

[SueJohnson in reply to draycott1]

I am an 82 year old female and I no longer have hair in my armpits nor on my legs. So it may be just age?

[auldreekie18 in reply to draycott1]

Thanks for that keep going all the best.

[Princesswawa]

Hi! I was put on buprenorphine and gabapentin together to tackle my RLS. I definitely feel your pain when it comes to RLS. I have dealt with very severe RLS since I was a child. Was not diagnosed until I was in my 20’s. Gabapentin really seems to help when taken with my buprenorphine and I wake up periodically when my 3 year old wakes up but am able to go back to sleep with no RLS symptoms. It has really helped me! At first it made me too sleepy to take during the day, but now I can take it during the day if needed and at night. I really hope you find relief! I have alot of Ortho problems and pain, but RLS is the worst thing I have ever experienced!

[auldreekie18 in reply to Princesswawa]

You are so right worst thing I have had its the devis curse.

[auldreekie18 in reply to Princesswawa]

yes terrible thing we are all affected differently so we just have to work it out our selves .

[fishinphil1946]

My only comment is to be careful of weight gain. I take 600mg at 5pm and 600mg at 9pm. When you get old, it is a lot easier to gain than to lose weight. I gained 50 lbs in 10 years. Presently going to a gym. I also have a "wired" night when I forget the 9pm pills. Stay away from pramipexol, Nupro, and ropinerol if you can.

Best wishes!!!!

[auldreekie18 in reply to fishinphil1946]

What good advice took 2 600mg before bed woke up after 2 hours my head spinning could hardly stand still with RLS. wore off in morning .

[SiannaRae]

I take 200 mg Gabapentin and .25 mg ropinirole when I go to bed. It works well for about 6 hours. I sometimes then take CBD oil under my tongue or eat a gummie. This is relaxing and quiets my legs some. My legs are calmer if I lay on my stomach. Don’t know why but anything that softens the discomfort is welcome. Good luck.

[atwitsendd]

Hi, I have been on Gabapentin for quite some time now and it has been helpful, but I am going to try pregabalin (Lyrica) now since I've heard that really helps. I would try going on the Gaba again and if it doesn't help maybe try the pregabalin. This disease is horrible, good luck, I hope you find better relief.

[SueJohnson in reply to atwitsendd]

They are basically the same drug with the same side effects although some people find the side effects that bother them on one do not bother them on the other. The main difference is that Lyrica can be take all at one 1 time, whereas doses of gabapentin above 600 have to be split since it is not well absorbed above 600 mg. To get the equivalent Lyrica dose, divide the gabapentin dose by 6.

[enjoy2013]

I also have both Parkinson’s and RLS and I have had augmentation. But I have learned very quickly that augmentation came with 2 reasons in my case: excess of L-dopa (so you need to find the right dose) and sweet food.

Just checking your ferritin is above 100 to protect against RLS?

And I recently read on a Facebook post a lady who suffered of severe RLS for many years could get rid of it taking Truniagen 900 mg.

I also read here in a post on healthunlocked someone mentioned that RLS could be caused by SIBO. I hope this helps

[CranberryMix]

So sorry to hear about what you're going through.

I hope the Gabapentin works for you. I have been taking it for about 6 months now and have gradually increased to 2100 mg per day - taken at doses of 600 mg but 2 hours apart.

So, I start the first dose at 4 pm (300 mg), then 600 mg at 6 pm, 8 pm, 10 pm. Go to bed. It works 75% of the time, so still some RLS on 25% of nights.

According to Mayo Clinic, I can go up to 3600 mg! I know, seems massive.

I originally had a weight gain of about 7 pounds when I started, but that is coming off. I have heard that weight gain is a problem but I'm keeping an eye on it.

Also - I have one of those Fitbit watches, so I set alarms for the times I need to take the meds. and I keep that day's med in one of the pill minders in my pocket.