Anyone happy with Pregabapentin please say

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Aspmama
Posts: 4
Joined: Fri Nov 06, 2015 11:30 am

Anyone happy with Pregabapentin please say

Post by Aspmama »

My son, 17, has severe RLS and circadian rhythm disturbance, such that he can't go to school and has extremely low mood, he can see no hope of a future. He also has an Asperger's diagnosis and is severely anxious - we are in the UK, but I think in the US he might have an Attention Deficit (inattentive) diagnosis, and of course ADHD and RLS are closely associated.

A consultant has recommended Pregabapentin, saying that there is hope it will reduce both the RLS and the anxiety, but my son will be very, very anxious about trying it. I know it doesn't work for everyone, but is there anyone here who finds it does work - for RLS, or for RLS and anxiety? Is there anyone who has, or knows of, a teenager or twentysomething with ADHD and RLS for whom Pregabapentin has worked?

Polar Bear
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Re: Anyone happy with Pregabapentin please say

Post by Polar Bear »

Welcome to the site. I am unaware of anyone on the site who is in the same position as your son which is not to say that other members don't know anyone, they might well do.

It is a very difficult situation for yourself and your son and indeed as he heads for adulthood it must be very anxious for both of you.
Has your son tried any medication for RLS symptoms either from his doctor or over the counter. And some prescribed medications can interact with the RLS symptoms, triggering and/or making worse the symptoms. And certainly many over the counter seemingly innocent medications such as Beneylin.

Has his ferritin serum level been checked (iron stored in the brain), this should be up near 100, and not around the 20 which may be accepted by doctors as normal.
How severe are his RLS Symptoms, in the evening, during the day also, just in his legs ??? or also arms ?? At what age did RLS start.

And Yes, from my personal situation I feel that certainly a hint of ADHD could be possible.

Perhaps if you could provide a little more information it will help us.

Pregabapentin is an anti seizure drug and will work well for many sufferers of RLS/WED. Many of our members will have experience of this drug.
What dosage has your doctor suggested.... it may need to be slowly titrated upwards to reduce side effects and arrive at a dosage that will work.
Other members will have more experience of this drug than me.

With regard to circadian rhythm disturbance, melatonin is sometimes tried with this, it didn't work for me and some trains of thought feel that it is not RLS friendly.

I am sorry that your son is dealing with this horrible condition as well as his Asperger's diagnosis.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Re: Anyone happy with Pregabapentin please say

Post by ViewsAskew »

Generic name pregabalin, this drug has definintely worked for some adults here. As Polar Bear noted, not as many parents come here and share their children's stories, so we don't know as much as I wish we did.

Gabapentin, pregabalin, and gabapentin encarbil are all very similar. Is there a reason the doctor suggested this form? Likely because in the US prescriptions have a different cost structure, most people here try gabapentin first and avoid pregabalin if possible because it costs much more. But, all three drugs work very similarly, so it could be that any of the three could work. Gabapentin encarbil has some advantages in bioavailability.

My nephew has Asperger's, Tourette's and OCD. Finding the right drug combo was essential. Once they accomplished that, he did quite well. The COD, in some ways, is the most limiting. As with your son's anxiety, the OCD (especially when he was younger) could keep him so upset that he couldn't focus on anything else.

For a very tiny percentage of people who take this class of drugs, it can cause depression and some people have thoughts of suicide. It's less than 1%, but it has happened to some of our members. While it helps most people with RLS, with sleep, and with mood, if you try it, please know to watch for this and keep checking in with him about mood.
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.

Aspmama
Posts: 4
Joined: Fri Nov 06, 2015 11:30 am

Re: Anyone happy with Pregabapentin please say

Post by Aspmama »

Thanks to you both. I got his ferritin up to 80 ug/l in Jan, it seems to me that iron depletion earlier, when he was below the ferritin range, probably triggered the rls. The U.K. Paediatric guidance is to get over 60, but I saw Johns Hopkins says 100, so I kept supplementing ... There was no improvement, and after a bit in a low mood he refused to take any more. I am sure his level will have dropped again because he eats no meat and has a v restricted diet. How long do members find it takes for iron sups to work when they do.?

He had a short trial of gabapentin - I am not sure if it worked or not - at one point he said thr rls had gone, then a few weeks later he said he had been lying to cheer me up and stopped taking it. I think maybe it had worked and he stopped because he thought it had gone for good. In the uk the nhs will pay for the pregabalin because a consultant has advised its use, thinking it may help the anxiety and the rls. I agree that the right drug is key, but I also have to persuade him to take it for a few months at least, to try it properly. I know about the suicide risk and of course if it lowers his mood further it is not the right drug for him. I will watch v carefully.

Thank u again for your comments.

Aspmama
Posts: 4
Joined: Fri Nov 06, 2015 11:30 am

Re: Anyone happy with Pregabapentin please say

Post by Aspmama »

He developed it about 3 years ago and it is very severe and painful, and with him for much of the time. It is in the legs. He takes no other drugs. He also has tinnitus, poor guy, but he is coping with that. I think there is probably a common factor to all his conditions, iron and maybe other nutrient problems may be that factor.

ViewsAskew
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Re: Anyone happy with Pregabapentin please say

Post by ViewsAskew »

He's lucky to have you.

I would definitely try it given that gabapentin seemed to work before. As you said, you just need to get him to keep taking it and understand that if it stops it, it's because of the drug and if he stops, it will come back.

Per the iron, the problem is we're all different. I have had two infusions - my ferritin was originally about 8 and iron supplementation didn't help. I have found that for me to have a 50% reduction in symptoms, I need to have my ferritin over 230. Below that and it's not enough. Other people find that 50 is enough and some find that even 300 is not enough. The problem is getting the iron to the brain where it's needed and there is not way to do that. It may get there....and it may not.
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.

Aspmama
Posts: 4
Joined: Fri Nov 06, 2015 11:30 am

Re: Anyone happy with Pregabapentin please say

Post by Aspmama »

Whoah, Viewsaskew, over 230! That's very interesting. Yes, I have read that the brain gets iron last in the queue, and I would take a leap and guess that maybe if there is any inflammation in the brain, or perhaps even low levels of antioxidants in the brain, the blood brain barrier might have mechanisms to stop extra iron from getting through.
I doesn't look as though science has got very much idea how it works yet.
Fingers crossed I can find a way to persuade him to try it. If I do, I will post the results. If anyone else reads this and has had a good experience, please let me know, especially if it also helped anxiety.
Sorry I didn't spell it right!

badnights
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Re: Anyone happy with Pregabalin please say

Post by badnights »

One thing to realize about the iron is that for some reason our bodies dump it, so we generally have to keep supplementing with it. Most people who have low iron can take supplements for a while til their stores are up, then stop. WED/RLS people need to keep taking it, because an unknown mechanism keeps depleting it. It is probably critical for your son to keep taking it if he doesn't get much in his diet. I take ferrous fumarate twice daily with vitamin C (acid is necessary for absorption). When I stop, my symptoms worsen after a lag of 1-2 weeks, and when I take iron again, they improve after a similar lag.

Besides iron, vitamin D insufficiency has been linked to WED/RLS (eg. https://www.dovepress.com/possible-asso ... rticle-NDT
http://www.docguide.com/effect-vitamin- ... ome?tsid=5
http://www.vitamindwiki.com/Restless+le ... +Sept+2013).
Vitamin D is commonly low in North Americans, so perhaps in Europeans as well, if you go by the newer recommendations that levels should be 30 or even 40 micrograms/litre. (Some agencies still say levels of 20 are fine.) I take 4000 IU daily.

Maybe your son will be more receptive to nutritional changes than medication ones. My most dramatic improvement in WED/RLS came from a serious diet change. I started following the Wahls diet level 2. Since I changed so many things, it;s hard to say which the effective ones were, or if I needed to do them all, but here are some of the more significant changes:
  • eliminated gluten and dairy
  • eliminated grains (this is important, because I brought them back in at one point and sufffered for it, removed them again and improved but other things were going on, too, so I can't make a firm correlation).
  • ate 6-9 cups vegetables every day, of which 3 were S-bearing (eg. broccoli & onion families), 3 colored other than green, and 3 leafy green.
  • reduced starchy carbohydrates
  • ate organ meats 3x weekly
  • ate cold-water wild-caught fish 3x weekly.
If he were to try something less drastic, I suggest eliminating gluten and dairy, and if possible also reducing or eliminating grains. I know it's hard, but I was taking 18 to 21 mg hydromorph contin daily, and I dropped to 9 mg, sometimes 12.It was huge! And it still is huge. I have since gone back up to 12 mg most of the time because of that unintentional experiment with grains I mentioned above; whatever screwed up there has still not resolved. Way better than 18-21 though!

After the diet changes, I also underwent treatment for SIBO, but the gains I made largely happened before that. SIBO is bad bugs in the gut, and that's a whole new world to think about. An aside that might be important in the context of your son's anxiety, is that my chronic, low-grade depression and anxiety disappeared after the SIBO treatment. It seems fairly well accepted in some circles - not totally mainstream though - that gut bugs' metabolites making their way into one's bloodstream can have neurological/psychiatric effects. I didn;t even notice it for a couple of months; then one day I put two and two together and realized I hadn't felt that gnawing anxiety since some time during the treatment. Since the treatment lasted 3 months, again I can't say for sure that they're related but .. it was a profound difference in my life, after years of dysthymia and anxiety to have that gone; and the SIBO treatment is the clearest thing to relate it to.

Another thing that might be important is growing new neuronal connections by purposely activating the parasympathetic nervous system. I'm definitely out on a limb here, but I base it on a book called Explain Pain by two medical doctors that was recommended to me by one of my doctors. I had a hard time relating that book to WED, since most people with chronic pain don't move whereas WEDers do nothing but move and are punished fro relaxing, but ultimately I realized the principles would work - - I'm running out of steam, maybe I'll finish this thought another day. The upshot is that the more time you spend in a state of calmness and security (I can't say relaxation), the more your body is likely to access that state at other times, and in that state, repairs are made - hypothetically then, fixing whatever is messed up in WED - plus new neuronal connections are established that can potentially- here's the limb I'm crawling out on - bypass the circuits that produce WED sensations.

Unfortunately, it would be easier for him to face all this with the right combo of meds, which would give him the stamina and stability to make dietary changes. Either way, you;re right about the length of time required to notice a change. The diet will be 2-3 months. Meds might be less or the same depending on the meds and on his particular physiology.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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