Discovered something but it could be bad for me

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

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.
Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Discovered something but it could be bad for me

Postby Tirisilex » Tue Jul 02, 2019 1:16 am

Well.. I'm very concerned about this.. I'm taking 2400mg of Gabapentin twice a day to relieve my RLS it's a very high dose and my Doctor didn't prescribe it to me at that dose. It was prescribed at 800mg 3 times a day. I'm concerned about taking a high dose but it's the only dose that is effective in treating the RLS. By itself, at that dose, it lasts maybe 4 hours. But I found that when I take Carbodopa / Levodopa it lasts about 12 hours and I have perfect calm legs. It works great. I can sleep and have no problems all night long. I just discovered this last night and all day today. NO RLS using these 2 together. But, like I said, this is a VERY high Dose and I'm concerned about the effects it may have on my Body. I don't see my Doctor until the 12th of July. Does anyone know if this dose is dangerous to me?

stjohnh
Posts: 971
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Discovered something but it could be bad for me

Postby stjohnh » Tue Jul 02, 2019 3:00 am

Gabapentin doses are tremendously variable. I can take 150mg and do ok. If I take 200 mg I become a zombie. There are others on this forum taking doses like you are without problems.

Of more concern is the carbidopa/levodopa (Sinemet). This is essentially pure dopamine. It works well and fast for RLS, BUT causes augmentation in a VERY short time if taken daily. It should only be used to treat RLS in temporary, urgent situations, like a long plane flight, or occasionally to treat breakthrough symptoms that are otherwise well controlled.
Blessings,
Holland

debbluebird
Posts: 2061
Joined: Mon May 21, 2012 3:27 pm

Re: Discovered something but it could be bad for me

Postby debbluebird » Tue Jul 02, 2019 9:35 am

I would switch the Carbidop/levodopa to another DA. I've taken it. For me it only works a very short time. A few days at a time, and then I would augment. That being said I've taken the other DA's too. The first time I was able to take mirapex for 9 years. Then I augmented. Since then it was been limited. Now I can no longer take it.
So what I'm saying is, if this is your first time around with a DA, then I would take mirapex. You might be able to take it for several years.
Not sure about the high dose of the gabapentin. The only thing for me is that I slowly have had to take more. My highest was 1800 mg spread throughout 24 hrs. Now I've reduced it back to 1200 mg and increased my methadone. Gabapentin gives me an appetite so so gain weight. I can't afford to do that. The combination of the two are the only thing that works for me. I used to be able to just take methadone which allowed me to stop 5 other meds which turned me into a zombie. As my legs have gotten worse that's where I'm at.
Good luck.

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: Discovered something but it could be bad for me

Postby Tirisilex » Sun Jul 21, 2019 6:05 pm

My Doctor said that the dose of Gabapentin I am on is fine. I've been on this regiment for a while now and I am doing quite fine it is like a miracle find for me.

stjohnh
Posts: 971
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Discovered something but it could be bad for me

Postby stjohnh » Sun Jul 21, 2019 8:18 pm

Tirisilex wrote:My Doctor said that the dose of Gabapentin I am on is fine. I've been on this regiment for a while now and I am doing quite fine it is like a miracle find for me.


YAY !!
Blessings,
Holland

Polar Bear
Moderator
Posts: 7619
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Discovered something but it could be bad for me

Postby Polar Bear » Sun Jul 21, 2019 9:09 pm

Does that mean you are no longer taking the Sinemet?
As per stjohnh's post above, It is not good to use it as regular medication.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Frunobulax
Posts: 198
Joined: Mon Jun 02, 2014 7:41 pm

Re: Discovered something but it could be bad for me

Postby Frunobulax » Tue Jul 23, 2019 6:41 am

Tirisilex wrote:My Doctor said that the dose of Gabapentin I am on is fine. I've been on this regiment for a while now and I am doing quite fine it is like a miracle find for me.


My understanding is that Gabapentin has a limit that the body can process, and it won't be more efficient if you take more. IIRC the limit was considered to be in the 1500mg or 1800mg per day range. Gabapentin enacarbil however can be used in higher doses. At least that's what my doctos said 5 years ago when I had a brief but unsuccessful brush with Gabapenin.


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