How much gabapentin and other drugs?

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MJDK
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Joined: Sun Feb 24, 2019 8:33 pm

How much gabapentin and other drugs?

Post by MJDK »

I have to apologize because my issues seem to be minor compared to the other RLS sufferers who seek advice in this forum. I would really appreciate everyone who is willing to help me with a response. I am 67. I am active at a healthy weight, non-smoker, 1 beer a day or less. I started on half of .25 ropinirole early in 2018. I also add the following drugs scattered either throughout the night due to insomnia or I alternate the use of these drugs: ambien, xanax, hydrocodone. RLS symptoms have become more severe -- I have it in the day time. But is really ramps up early in the evening, and I have frequent leg and foot neuropathy. I am not diabetic. My bloodwork is a picture of health and ferritin level is about 140. Because the symptoms seem to be getting worse I am now taking anywhere from .25 - .5 mg of ropinirole. If I have pain along with the RLS, I take 2.5 or 5 mg of hydrocodone, and if the insomnia is bad, I also add either ambien or xanax or both spreading them out over the night time hours. I've tried medical marijuana and it doesn't seem to work for me on a consistent basis. I know all my dosages are very low, but I am still concerned not only about the apparent augmentation, but about taking too much and becoming dependent on the other sleep and pain aides. My neurologist prescribed gabapentin, but I am so fearful of taking it that I've only tried 100 mg. I see that other sufferers are taking thousands of mg in a day. The side effects I am having from 100 mg are bad dreams and frequent wakefulness. Perhaps I am not taking enough??? He wanted to start me on 300 mg ---- but at my request he gave me 100 mg capsules. Now he wants me to take Wellbutrin. Am I depressed? You bet cha! Because I am not sleeping well. He thinks the Wellbutrin will help the RLS and insomnia. He also wants me to start using the Neupro patch while I wean off the ropinirole - but my insurance requires prior authorization and a request to move it from a Tier 4 to Tier 1 drug. At tier 4 it is over $700 per month. I did contact Dr. B who said I am probably augmenting so I should get off the ropinirole and try methadone or oxycodone. No one is going to prescribe those drugs for me at this point. I am in FL. I am reluctant to get on another drug (wellbutrin) - - - wondering if I should increase the gabapentin to 300 mg and see how it goes? Oh, and my neurologist does not want me to wean off ropinirole until I am doing ok on either gabapentin or wellbutrin. Dr. B also said I shouldn't take the hydrocodone because I don't need the acetaminophen that's in it - - - - but that's all I have and I am very conservative about taking it so that I don't run out. It really helps with the pain. Has anyone had very positive results from Wellbutrin? What is the starting dose of Gabapentin and should I try that before the Wellbutrin? Does anyone else have neuropathy in their legs and feet from RLS? What are the best rescue drugs for insomnia when the RLS is being controlled? One of the most frustrating aspects of this disesase is the variability of the symptoms. I suffer daily - - - - but sometimes the ropinirole works, sometimes it doesn't, sometimes I need all drugs available thoughout the night, sometimes not. It's insane. Thank you, thank you, thank you for any and all recommendations.

Rustsmith
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Re: How much gabapentin and other drugs?

Post by Rustsmith »

That is a lot of questions. I will try to answer some of them.

Wellbutrin is an anti-depressant that also has dopaminergic properties. I tried it and it was horrible. HOWEVER, Wellbutrin's chemistry is very similar to that of Sudafed and I react horribly to Sudafed. So, in retrospect my reaction to Wellbutrin was predictable. I learned that I now have to list all of my drug intolerances as drug allergies.

Gabapentin is probably the most effective sleep aid for many of us. Personally, I don't get much benefit from ambien or xanax. I can get a little bit of help from Klonopin (which is similar to xanax) for a day or two, but gabapentin and THC are the only things that consistently help me fall asleep. I take 900mg of gabapentin. I found that 600 wasn't enough and I started to get side effects at 1200.

You didn't mention when you take the hydrocodone. Many of us experience opioid-induced insomnia. I found that I have to take my opioid at lunchtime so that the insomnia side effect has worn off by bedtime. This forces me to use a long acting opioid such as methadone or tramadol ER.

I understand and sympathize with you about the opioid issues in Florida. You might at least inquire about tramadol. Tramadol is a Sch IV med where your hydrocodone, methadone and most of the other opioids are Sch II. You might have better success, but I wouldn't bet on that.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

MJDK
Posts: 37
Joined: Sun Feb 24, 2019 8:33 pm

Re: How much gabapentin and other drugs?

Post by MJDK »

Thank you, Steve for your response. I didn't know that hydrocodone could cause insomnia. I've noticed that when I take it before bed, the RLS and pain go away, but I don't sleep - - those nights are the ones in which I usually end up resorting to ambien, xanax or both. Did you start with 300 mg of gabapentin and then titrate up to a dose that works for you? Does it make you have bad dreams or feel sick at all? What were your side effects at 1200 mg? I think perhaps I should try 300 mg. I've only been taking the Wellbutrin 2 days - - no side effects, but I had a bad night last night with pain. If anyone sees this that has had a positive experience with Wellbutrin, I hope they will share. I know my previous message was long, probably rambling, and with lots of questions so I really appreciate, Steve, that you took the time to read and write back to me.

Rustsmith
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Re: How much gabapentin and other drugs?

Post by Rustsmith »

Yes, I started at 300mg and quickly titrated up to 900mg. It has been a long time ago and I was switching from a similar drug, zonisamide, that I was taking for migraine prevention. So, it wasn't quite like I was starting from zero.

As for the side effect, it made achieving orgasm almost impossible. My doctors have all wanted me to go higher until I explain why I refuse to do so, at which point they don't say much more, one way or the other.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: How much gabapentin and other drugs?

Post by ViewsAskew »

MJDK wrote:
Sun Sep 20, 2020 5:03 pm
Thank you, Steve for your response. I didn't know that hydrocodone could cause insomnia. I've noticed that when I take it before bed, the RLS and pain go away, but I don't sleep - - those nights are the ones in which I usually end up resorting to ambien, xanax or both. Did you start with 300 mg of gabapentin and then titrate up to a dose that works for you? Does it make you have bad dreams or feel sick at all? What were your side effects at 1200 mg? I think perhaps I should try 300 mg. I've only been taking the Wellbutrin 2 days - - no side effects, but I had a bad night last night with pain. If anyone sees this that has had a positive experience with Wellbutrin, I hope they will share. I know my previous message was long, probably rambling, and with lots of questions so I really appreciate, Steve, that you took the time to read and write back to me.
I am taking a different opioid...just wanted to say that many of us have had to deal with insomnia. If I take mine early enough - 4:30 PM for a bedtime of midnight to 1 AM most times - I have no problem sleeping, nor with movements. BUT - I take a very long acting opioid.

Gabapentin always made me tired and kept me asleep. It never helped the movements or sensations, however.

I didn't have any luck with Wellbutrin - but not bad luck, either. Just didn't help me feel better or help in anyway. We are all so different, though.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: How much gabapentin and other drugs?

Post by badnights »

Hi MJDK! You are dealing with serious problems that don't seem minor to me. Maybe because I know (as we all do here) how badly those issues can mess up a life.

1mg ropinirole is the maximum you should take, according to Dr Buchfuhrer and other specialists who have treated a lot of augmented WED/RLS patients. This upper limit is not as high as the FDA allows, but it is a realistic maximum for anyone with WED/RLS, for very good reasons - augmentation can be hell on earth, and the higher the dose, the more liklihood of augmentation. <<<CORRECTED - I had initially written 0.25 mg is the max - but the max recommended by Dr B is 1 mg. (Max pramipexole is 0.25 mg). Apologies. :oops: >>>

Most important thing is to get your iron status checked, including a measure of your serum ferritin. Low ferritin below about 100 (for people with WED/RLS) indicates insufficient iron in some part of the body. Each body part has its own level of iron, so all the low ferritin tells you is that some body part is low in iron. Most doctors don't realize that serum measures of iron (from the blood) don't reflect iron status in other tissues. There is a lot of evidence that WED/RLS patients have brain iron deficiency, so if your ferritin is below 100, that's probably why. It means you might respond well to iron therapy, either oral or intravenous (see the link in my signature; specifically, the 2018 consensus guidelines on treating RLS with iron). Iron therapy is cheap and easy, and by itself can reduce symptom severity and reduce (or eliminate!) the need for other medications.

High ferritin means nothing - maybe you have low iron stores somewhere, maybe you don't. Maybe iron therapy will help you, maybe it won't.

Many labs consider ferritin concentrations to be ok as long as they're over 20. For WED/RLS, they really need to be over 100.

I wouldn't bother with the Wellbutrin unless you feel that depression is debilitating you - and in that case, it might be better to get a more effective AD and treat any resulting worsening of RLS/WED. Wellbutrin had zero effect on my WED/RLS (but I only tried it for 3 days). No one here really has a lot to say about it one way or the other.

Gabapentin at 100 mg is not likely to do much. You will need more than that.

As for using Neupro to wean off ropinirole - - sheesh. The fire won't burn as hot but it will still burn hot enough to hurt you, is the way I look at it. There may be some advantage, but it seems that the long-acting dopaminergic meds (Neupro) just mask the augmentation, which means it will come back to bite you at some point. Meaning, you will still have to get off the Neupro.

Your alternatives if you don't have a prescriber who will try an opioid are limited. You could try the Neupro; at least then you could say you did everything he suggested. You could up the gabapentin or preferably switch to Horizant (gabapentin encarbil), which is more predicatable in effect. You could order the opioid-like herb kratom, which is legal in many parts of the wolrd, including some (most?) states of the USA, and use that to cover your withdrawal symptoms. You could do all three together. Or you could stop the ropinirole without any opioid or kratom to help deal with the increased symptoms, clear your calendar for at least a week, grit your teeth and get thru the no-sleep always-being-tortured period, it gets better.

But without a plan for how your symptoms will be dealt with after the withdrawal period is over, none of that is enough.

I think most of us - certainly a lot of us - cannot predict what medications we will need from day to day. A core dosage of one or two meds, then two to four other things as needed; that seems to be common among us. Sleep, as Steve mentioned, is best aided by the anti-convulsants (gabapentin, Horizant, Lyrica/pregabalin). But people also have success with sleeping aids like Ambien, Imovane/zopiclone, eszopicline; and others with cannabis (see Topics here devoted to it). You could also use melatonin but definitely not as needed; it has to be taken at the same time every day, 1-2 hours before bed.

I don't know that neuropathy is caused by WED/RLS but they are common together.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

MJDK
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Joined: Sun Feb 24, 2019 8:33 pm

Re: How much gabapentin and other drugs?

Post by MJDK »

Thank you, Beth for responding. It's been a few weeks since I checked this discussion board and I just read your response today. Here is an update on my meds - I have been taking Wellbutrin (150 mg) every morning for about 5 weeks. I am pleasantly surprised to report that it is helping my overall mood, and my RLS seems to be more tolerable. Right now my med regimen is .25 ropinirole at 6 pm plus .125 at bedtime with .375 mg of xanax. My mental alarm clock seems to be set at 4 AM - - which is frustrating, but I am still getting 5-7 hours of sleep each night. I usually take the Wellbutrin at 5 AM, but perhaps if I take it later in the morning - maybe 9 AM, it will help me sleep longer at night. I am going to try that. Just had an appointment with my neurologist yesterday and he wants to add 150 mg Lyrica to my night time meds - - - - thinking that it might help me sleep through those early morning hours. I am reluctant to add another drug - he said I can take the Lyrica with the ropinirole and xanax. Do you see any issues with that? Thank you for your thoughtful reply.

Rustsmith
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Re: How much gabapentin and other drugs?

Post by Rustsmith »

MJDK, Wellbutrin is a rather stimulating medication, so taking it a little later isn't likely to help with your sleep. As for adding the Lyrica, it is sedating so it should help with your sleep. Quite a few of us combine a med to manage the RLS need to move symptoms (typically either a dopamine agonist like your ropinerole or an opioid) with a med to help with sleep (such as gabapentin or Lyrica). Xanax can also be sedating and lasts longer than Lyrica, but maybe you need more. My own RLS medication regime involves an opioid combined with gabapentin. The gabapentin helps me fall asleep but seems to fade by the early morning hours. I live in a state where marijuana is legal, so I also use an edible THC product. The edible marijuana has a sort of time delay effect and allows me to stay sleep until around 7A.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

MJDK
Posts: 37
Joined: Sun Feb 24, 2019 8:33 pm

Re: How much gabapentin and other drugs?

Post by MJDK »

Thank you Beth, can you share how much gabapentin you take? I also have a MM card in Florida. Never been fond of THC - the CBD capsules give me a stomach upset. I think micro-dosing with a hybrid tincture or smoking when I wake up might be the best. I have some 300 mg gabapentin capsules. I suppose I could try that with the ropinirole and maybe no xanax. I am my own worst enemy when it comes to treatment. I am irrationally paranoid of drugs. I think it's due to my mother having prescription drug addiction for her entire adult life. Nevertheless, I know that the ropinirole works, the xanax works, and wellbutrin. I just need to make adjustments so that I'm not waking every morning at 4 AM.

Rustsmith
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Re: How much gabapentin and other drugs?

Post by Rustsmith »

Be careful with stopping Xanax. The benzo's (like xanax) cause physical dependence so that stopping them suddenly is not a good idea. If you want to ultimately stop the xanax, you should SLOWLY reduce the dose, but the discussions that I have seen elsewhere talk about it taking months to actually get off of of a benzo without problems. This is something that you should discuss with your doctor before you try it.

As for MM, tinctures and smoking will provide almost immediate effect, but that effect wears off somewhat quickly. So a puff or two in the middle of the night would help you get back to sleep. The edible products (cookie, candy, etc) take about 2 hrs to take effect, but will last for about 6 hrs. This "time release" property is what gets so many people in trouble. They eat a brownie, think that it isn't working so they eat another. Then they both kick in and that person is seriously stoned. They think they need medical help, but all the ER can do is let them sleep it off. As for the CBD capsules, the first CBD capsule product that I tried worked fine. The second product caused horrible stomach upset. Since then, I have found that CBD only helps me when my RLS causes anxiety. My wife uses CBD tinctures for her MS and it works fine for her. For me, it does little or nothing for my RLS.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

MJDK
Posts: 37
Joined: Sun Feb 24, 2019 8:33 pm

Re: How much gabapentin and other drugs?

Post by MJDK »

Thank you - I'll be careful in reducing the xanax. I guess it's OK to take 300 mg of gabapentin plus 3/4 of a .5 xanax - - - - that's what I'm going to try tonight along with half of a .25 ropinirole. I am very reluctant to combine meds - - - but I know this is probably necessary in order to sleep and keep my RLS quiet. Do you think that will be OK? Gabapentin, xanax, and ropinirole?

Rustsmith
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Re: How much gabapentin and other drugs?

Post by Rustsmith »

That combination should not be an issue. I have taken pramipexole, 900 mg gabapentin and clonazepam (another benzo) along with methadone. The only risk was the combination of the methadone and the clonazepam since both are respiratory depressants, so my doctor was adamant that I had to use my CPAP machine. Fortunately, the clonazepam was a short term thing.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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