Feeling Discouraged

I just got home from my first visit to the neurologist, and I wanted to update all of you who might be curious as to what transpired since my last post (by the way, thank you to all who responded - I appreciate all of the advice!).

So, the neurologist did indeed diagnose me with RLS. He prescribed Gabapentin, which I guess is the next course of treatment after Ropinerole/Pramipexole (both of which, as I mentioned in my first post, produced unbearable side effects for me). I have to admit, I'm somewhat discouraged, as I've not heard many good things about Gabapentin, and I was hoping the doc would suggest some kind of opiate (since that's what I know for sure will work).

My issue is, as a student, both my time and my funds are extremely limited. Between those factors and the fact that I do not want to wait any longer to find some sort of real (sustainable) relief, I do not want this to be some long, dragged out trial-and-error process during which I have to spend $200 per office visit, however much $ on prescriptions, and miss class/work for additional appointments. Does anyone have any advice on how to avoid all of these costs (financial, etc.) or how to find relief more quickly? Or just any advice in general? How many times did you have to visit your neurologist until you found your solution?

Edit (@ 12:30am): I took the prescribed dose of the Gabapentin and I'm having side effects - I'm wide awake (whereas I was very tired before taking the meds) and am having diarrhea. Should I call the neuro tomorrow, give it a few days, or just try to see a different neuro? Sorry for all the questions, I'm just desperate at this point and would appreciate anyone's input...

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10 Replies

  • Hi hm523

    Diarrhea affects one in a hundred gabapentin users. If it was me I would contact the neurologist because quite a few drugs now affect me in this way, so I would not be happy to  continue on this drug.  That is what I would do. As to trying a different neuro, not sure on that.

    Hopefully others will respond soon.


  • Thanks so much! I am going to give it a few days and then call the neuro and hope that he can just prescribe me something else without me having to pay $200 for another office visit. I'll let you know that happens

  • Gabapentin makes me dizzy but perfect at night along with cymbalta and flexeril my rls and sciatica are practically gone. 

  • It is the same for me. Cymbalta, or Duloxetine is a much heavier drug and affects your brain very heavily. But, I was desperate. I was depressed but not "suffering from clinical depression as every doctor tried to say. Surely my life was hard and I was unhappy, but hurting all over and legs throwing themselves around, did NOT help. Also, the nerve damage in my back going down my legs, every time it is bad, my RLS and PMLS gets ten times wors.  The Cymbalta  I will never go off of it. It practically saved my ability to function. I hear of other people taking just Lyrica, which I tried and it did not work. I was groggy, could not go to work, or function at home.  The rheumatologist suggested the gabapentin or Neurotin.  And I have to be honest, when it gets bad, my back where I have AS, Spinal stenosis and the usual disc degradation, and that pain starts shooting down you leg where it won't stop, RLS acts up again.  So, I have to take it. But I do not take it all the time.  So, I have reached a sort of plateau at this point. I hope this helps anybody. Somebody. Stress is a huge aggravator. And I live with mine.

  • Gabapentin is the worst drug prescribed and in the u.k it is prescribed for almost every ailment . I have tried many prescribed meds for Rls and nothing has worked . I'm not sure if you can buy this particular spray in the USA but you might be able to get it on the Internet from Amazon. It's called "Goodnight magnesium spray" purple box . Spray on your legs before bed and most nights I'm okay. Worth a try ,good luck . 


  • Yes, I agree with Shona48, Magnesium spray is helpful for me also, does not take pain away completely but certainly helps.  I have been prescribes Gabapentin for last two months but stopped two weeks ago having shocking side effects (massive drop in body temperature 3 times, feeling as though brain is whooshing about, dizziness, clumsiness and more).  Unfortunately I stopped taking without doctor's knowledge and am today going back to see him as these side effects are still there (not the temp drop, but all the others), so I am feeling dreadful and RLS is back.  Just using spray every night again but need some pain relief.  Have been on Ropinerole but gained massive weight, so not sure what is next.  Don't want anything that affects the brain again so probably have to make do with spray for time being.  Another side effect I am having with Gabapentin is needing to search for words I need, as this post probably shows.  Take care.

  • I've never seen a neurologist for RLS, (although have seen one for damaged discs and due to see another for other things). MY RLS has been treated most successfully by myself and then the GP has helped too.

    DR's you will get DA drugs which cause horrific side-effects in many, (the Neupro patch less so), opiates/opioids which some will misuse and Drs are fearful for prescribing due to various out-of-date laws. For your self there are many alternatives.

    You are in the States - get cannabis IF you can. It can be quite strain dependant but if you get the right one it works well, (obviously the draconian laws on cannabis in some staes means stay well away as the authorities would have no problem destroying your life with their misguided beliefs and their support for the status quo.

    Kratom is stand clear fantastic - it works on the opioid receptors but is no way near as problematic as the ones prescribed by Dr's. Check your state for laws, (some kids have been using it to get stoned - God knows how you would have to take an awful lot in my opinion - which means reactionary politicians in the US have started campaigning against it.

    There are a wide variety of essential oil, magnesium and Iron containing products that people have had help from.

    I know nightdancer swears by a bar of soap :p only kidding - just to warn you there are some really REALLY dumb ideas out there, you should get plenty of advice here. 

    Sorry the neurologist didn't work out for you - imo Drs have their way and ordinary scum like us should do what we're told!

    Good luck.

  • America is a wonderful place in many ways, but not apparently in its healthcare system.  $200 per visit - impossible for you to sustain as a student. Don`t judge the effectiveness of Gabapentine after just one or two days.  It is not renowned for keeping people awake, it has the opposite effect on me.  What dose are you on?

    You can vary the times that you take it.  There are people who take the entire daily

    dose at bedtime, though you would have to take medical advice before doing that. I do not envy your position, having to remain alert in lectures when you are very tired.

    I can only wish you the best of luck and hope you find something that works.

  • I understand you have already spent a fortune on things that have not worked. please go to u tube & look at the Relaxis pad before spending any more. You can call them for information at 888 475 7435.There are some knockout sites so be sure to use that phone number. The pad has enabled me to get 8 hrs of sleep at night & greatly changed my overall disposition!!! I had a sleep disorder and still take Temazepam at bedtime, but have now reduced the dosage. I have had no side effects from this med and will try to get off it completely

  • Hi there, I am guessing this is a US thread, and that some of the drugs are the same if not with different names.  This is just a short post for now, but I have been reading  about a lady from the US - Marie Goodwin - who claims that FOOD is the RLS culprit and that for $29.95 you can buy her online book and find out the cure.  Well, for that amount I think it is worth having a look. However, I wondered if anyone had heard of her, or indeed this 'cure'? Thank you.

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