Something to be aware of when taking Gapbapentin or Pregabalin.

[Goldy700]

Something to be aware of when taking these drugs long term. I was not aware of this..What Science Has Revealed About Neurontin (Gabapentin) and Lyrica (Pregabalin)

In a 2017 study published in the Journal of Experimental Pharmacology, researchers examined the risks and side effects of Neurontin (Gabapentin) usage. After reviewing dozens of animal studies, clinical studies and case studies, they concluded that:[3]

“[Neurontin] can induce diverse side effects such as teratogenicity, hypoventilation, respiratory failure, deficits in visual field, myopathy, self-harm behavior, suicidal behavior, mitochondrial toxicity, somnolence, dizziness, and asthenia.”

Several years ago, a 2009 study published in the journal Cell found that both Neurontin and Lyrica are, in essence, a death sentence for new brain synapses. After observing the neurological effects of both these drugs, researchers concluded that they could drastically limit the brain’s ability to rejuvenate brain plasticity and, therefore, cause even faster rates of brain decline.[4]

Furthermore, in March 2017, scientists published a study in the Iranian Journal of Basic Medical Sciences emphasizing the frightening adverse side effects of Lyrica, the more powerful Neurontin. In this animal study, researchers found that after three weeks of Lyrica usage, pathological damage occurred – regardless of the dose. Continued use of Lyrica eventually led to muscle loss and atrophy, as well as brain shrinkage.[5,6]

healthy-holistic-living.com...

[Jelbea]

Very interesting Goldy. I was given gabapentin about 14 years ago for what my GP wrongly thought was trigeminal neuralgia. I could not deal with the side effects and indeed I feel that gabapentin caused me to develop migraine with aura. I had never had this condition until I took gabapentin. I have read from someone else on internet that this happened to him also. I only took it for a few days and the migraine was triggered after the first dose. I would never take this again or its cousin pregabalin!

[RoMB]

If I can’t take Mirapexin, Pregabalin or Gabapentin, then what? I am at the moment reducing my Mirapexin and I have introduced Pregabalin. But now I am confused 🤷‍♀️

[Parminter in reply to RoMB]

A low-dose opioid such as methadone or oxycodone.

[Jrskyhook32 in reply to Parminter]

All methadone has done for me is to make me seriously drowsy.

[Parminter in reply to Jrskyhook32]

That's interesting - how much did you take?

[Hidden in reply to Parminter]

question for you:What about those you can’t take opioids at any dosage?

[Parminter in reply to Hidden]

I have no answer to that.

But I would be interested to know what circumstances would preclude opioids completely- and sad that such circumstances exist.

[Hidden in reply to Parminter]

Circumstances for not taking opioids:

allergy

Other health conditions preventing their use

Prior family history of opioid addiction

Own choice

I take it you’re saying it’s sad that these exist?

[Parminter in reply to Hidden]

Yes Jess. I have come to realize that opioids are powerfully helpful when used with care. And I am indeed sad that sufferers, particularly those with RLS/WED, may be unable to use them for any reason at all.

When I read of the horrors wreaked upon sufferers who use DAs or gabapentin/pregabalin, and compare those struggles to the side-effects of low-dose opioids, I am just plain sad that the latter are mostly 'verboten' for political reasons, not medical ones.

I have come out the other side of many years on pramipexole, and I paid a very high price. It is not good to watch your life pour down the drain - most of us are old enough to know that we are mortal, and that time does not come back.

[Hidden in reply to Parminter]

Yes, it may be sad in your eyes but that doesn’t stop it from being true that some of us either can’t or won’t take opioids.

I’ll stop here. I am bushed and I see that I’ve upset you (last paragrapgh)

Let’s just leave it at «agreeing to disagree».

Have a good day/evening/night! Having my tea and going to bed.

[martino]

Having been on both over time I am possibly affected in the ways the studies suggest. They do what they are prescribed for so notwithstanding the reports I am going to persevere.

[Parminter]

Thank you, Goldy, it is essential for sufferers to know this.

I am one of the lucky ones whose doctor refused point-blank to prescribe gabapentin or pregabalin.

I did, however, have to go through the horrors of a dopamine agonist, but not this as well.

It is clear that both gabapentin/pregabailin and dopamine agonists carry a huge load of adverse effects which doctors are mostly unaware of - why?

[RoMB]

I don’t want to start on something so addictive, I find that extreme

[involuntarydancer]

It is good to be aware of this information and alarming to see just how toxic these drugs can be but there is a need for some balance also. Rls robs a sufferer of all quality of life and my understanding is that there is a significant link to suicide (very understandably - who amongst us has not entertained such thoughts?). If there are drugs that allow some resemblance to a normal existence then they have to be considered and their side effects weighed in the balance. All pharmaceutical treatment options for rls are high octane and sometimes we have to make difficult choices. While no one should be on a potentially dangerous drug without being aware of the possible difficulties, those who are having success in treating their rls with one of these a2d ligands should bear in mind that they are using the drugs in a very good cause.

[Hidden in reply to involuntarydancer]

Agree 100%. All drugs have side effects, so it becomes a balancing act of "are we willing to live with the side effects of something that will most likely give us our lives back?"

[LotteM in reply to Hidden]

In addition, we are all different, thus also in how we react to the medicines. Whereas some may experience such side effects, others may not - even when on high doses. Thus, it is good to be aware and keep in mind that all drugs potentially have side effects. It just goes to show that one has to try carefully and monitors one’s reaction. And, to take these reactions seriously, especially if they persist for, say, longer than a week.

[Pam34 in reply to LotteM]

3 very balanced responses from involuntary dancer, Jess and Lotte. All drugs have side effects, I take Pregabalin and I have a quality of life I haven’t had for a long time. I’m not sure I’d be prepared to give that up, it’s a risk I’m willing to take. After all we are limited as to what we can take/do. I think we have to be careful how we post comments, many subscribers to this forum are desperate and need support, not scaring!

[RoMB]

I respect everyone’s choice of treatment, I am just alarmed to hear about them. I am new into this forum and I wasn’t expecting to read about that kind of medication. That brings even more fright and despear to me.

[involuntarydancer in reply to RoMB]

I found it very daunting when I first realised the caliber of the pharmaceutical drugs available to combat rls. However as I worked through all the various options to find the best balance between rls symptom control and drug side effects I became much less fearful. There is a good balance out there for most people. There isn’t anyone going through life who doesn’t have problems.

[Joolsg]

Thanks Goldy.

I have to take pregabalin in addition to OxyContin to control my RLS. I also have MS and try to do everything to regrow damaged brain cells. This reading is a bit worrying as my MS is likely to worsen by taking pregabalin.

However, as ID and Jess explain so well- some risk is essential to obtain some relief from the nightly torture.

At least we are now aware of that risk and can make informed choices.

Thanks- knowledge is power.

[Ert223 in reply to Joolsg]

There is scientific evidence that Taurine (an inexpensive) amino acid will increase

neurons in the brain. Taurine will cross the blood brain barrier and turn into

gaba. Gaba by itself will not cross the blood brain barrier. Should be taken on an empty stomach so it does not compete with other amino acids trying to get into brain.

Good luck...supposedly exercise will increase brain functioning. Sometimes with me

it aggravates the rls.

[jennymsolo]

I took Mirapex for 20 years. It worked great. I took it everyday at the same time and never gave a second thought to RLS. About 5 years ago I was diagnosed with trigeminal Neuralgia. I have MS which is what my doc think caused it especially since I have it on both sides. My doc put me on 3600mg of Gabapentin for the TN. I have intense pain in my legs every night so he said the Gabapentin would help. It didn't. But what happened was I became augmented with RLS. The Gabapentin gave me congestive heart failure, and I would up in the ER twice because I couldn't breathe. I told my doc I needed off the Gabapentin because I had symptoms of an allergic reaction. He told me to take it anyway. Apparently, I have more sense than he does so I gradually got down to 300mg Gabapentin a day. I had to decrease the Mirapex gradually, too, since he wouldn't help by switching the Mirapex. I'm working on getting away from him.

Every day when I take the Mirapex now I go thru hell for an hour. Evidently, you can't take the two drugs together.

[Joolsg in reply to jennymsolo]

Hi Jenny

I suspect it’s Augmentation on Mirapex after 20 years that’s putting you through hell.

What dose of Mirapex are you on now?

Gabapentin clearly is a no no for you but discuss other options with your doctors like opioids- OxyContin or morphine or methadone ( you’re in USA as you mention ER). If you are near California you could try to see Dr Buchfuhrer in Redwood. He also answers emails very quickly.

[jennymsolo in reply to Joolsg]

Yes I'm augmented. I take .5mg to 1 mg a day. I take as little as possible. I was on 2 mg. I assure you the Gabapentin caused the augmentation. I'm much better since reducing it to 300mg and hope to go off.

We can't get opioids easily here. My insurance doesn't cover pain management and doctors just flat won't prescribe pain meds, not even milder things. The pain clinic is where we have to go, and they want $850 just to walk in the door. That's out of my price range.

[Joolsg in reply to jennymsolo]

Have you got dose right ? FDA max dose is 0.5mg but most RLS experts believe it should be 0.25mg. 5mg would be 10 times over FDA approved maximum.

Gabapentin won’t help RLS symptoms while you’re augmented on a dopamine agonist.

I’m sorry that you are having trouble getting opioids. I think Nightdancer has a list of USA doctors who are familiar with RLS and are willing to prescribe opioids.

[jennymsolo in reply to Joolsg]

Yep, 1mg twice a day. I'm thinking my now former neurologist is so inflexible he is missing out on a lot of info. He thinks he knows it all. I won't be going back to him. He rude and has no bedside manner. He's clearly in the wrong field.

I have to stop taking Gabapentin altogether because I'm allergic. My heart is so weak I can't function well at all. I have to have my groceries and meds delivered.

[Joolsg in reply to jennymsolo]

Oh Jenny that’s terrible. I hope you can get the medical help you need. I know there has been legal action in the USA about Gabapentin and Lyrica- you should see if you can get some recourse against the neurologist and the drug companies.

Clearly your neurologist is not knowledgeable about RLS and you should try to see someone else soon.

I see from your other post that you also have MS. I also have MS and like you had an arrogant MS neurologist who thought he knew it all. He prescribed Amitriptyline and it made my RLS 1000% worse. I now have a younger female MS neurologist who is wonderful and openly admits she doesn’t know much about RLS.

I really hope you find a new neurologist and get some help for your heart problems.

Take care

[jennymsolo in reply to Joolsg]

Thanks. I'm taking Pamelor, too. I wonder if that matters.

I talked to a law firm yesterday that handles medical malpractice and mass torts (class actions). I'm not normally a litigious person but clearly this is one instance where I'm not ignoring the injury.

Even though I'm mostly off the Gabapentin I still feel so weak and miserable. I'm going to call my PCP tomorrow and see if she can help.

[Joolsg in reply to jennymsolo]

Hi Jenny

Pamelor is a tricyclical AD similar to amitriptyline and it will definitely make RLS worse. Safe Anti depressants are Trazodone and Wellbutrin.

See if you can switch. Tweaking meds can make a big improvement to the RLS.

[jennymsolo in reply to Joolsg]

I see. Well I'm not taking it for the antidepressant quality. I'm taking it for the nerve pain caused by trigeminal Neuralgia. I'll talk to my new doc about it.

[Joolsg in reply to jennymsolo]

Of course- nerve pain. The only other option for that is the alpha2delta ligands which aren’t suitable for you because of the heart congestion.

Trigeminal neuralgia is horrible- I’ve had that and occipital neuralgia so I know what you’re going through. I was lucky to only have them for about 2 months.

Is cannabis legal in your State? That would help both the trigeminal neuralgia and the RLS.

It’s illegal here in the UK but I have used it for MS nerve pain and withdrawal from Ropinirole and it’s been really helpful.

Also CBD oil can help.

[jennymsolo in reply to Joolsg]

It's not legal in my state but easy to get. It helps me sleep but not so much with other issues. I took CBD oil for a while but I haven't been able to afford it much.

[jennymsolo in reply to Joolsg]

I'm wondering if LDN (low dose naltrexon) would help RLS?

Unfortunately, my clinic won't let me change doctors so I have to see the same lunkhead doc who caused all this mess next week,

The good news is I finally got insurance. It's effective March 1, 2019, and does have a few pain mgmt docs in network.

[Joolsg in reply to jennymsolo]

LDN has been useful for several members on here. Flowergirl used it to withdraw from OxyContin and pregabalin and then used 5mg every day and reported that it completely stopped her RLS. She’s no longer a member so we cannot ask if it’s still working bu presumably it is.

Involuntary Dancer has also used it and felt it helped her with RLS- so look at her posts.

If you can get hold of it definitely try it as it seems to help during withdrawal and thereafter.

[jennymsolo in reply to Joolsg]

That says .5 mg not 5mg.

[karr54 in reply to Joolsg]

I would be very much interested in getting on opioids. My doctor will not prescribe them. I have tried just about everything, including augmentation on Mirapex. The only thing I can get now is pregabalin, which is why I am up at this hour. I was on gabapentin. My psychiatrist put me on duloxetine, and I quit taking that cause it made my rls worse. Been on ropinirole, hydroxyzine, mirtazapine, you name it, I've been on it and everything they put me on doesn't help. I also suffer from ptsd, some doctors call it bipolar one, others, major depression, with suicidal thoughts. I can't get a proper diagnosis, so how can I get prescribed the right medication. Everything they give me makes my rls worse. But one thing is very clear, I have rls, and have had it since I was a child. I can remember my daddy use to rub my legs all the time when I was little. Now it's worse than it ever was. I'm 65 now, and no better off than I was when I was 4 or 5. I have rashes on my ankles, don't get any sleep to amount to anything, and I am so tired of these doctors that don't know the first thing about rls, nor do they have it, and ooohhh how I wish this upon them. I am so glad I found this sight, I have only been on here for a couple of weeks. Spent many, many hours on here trying to get some answers, but it doesn't do me any good, because my doctors won't listen. Called my psych twice and had to leave messages because they won't answer the calls, nor do they call me back. That is very sad, when you have someone's desperate life in your hands, and you don't even respond to them. Just went to my pc today, that's when I was put on pregabalin, I ask for opioids. Thanks for listening, and I'm glad I got to vent, I feel a little better now. lol

[Goldy700 in reply to karr54]

Hi Karr54 I have had a lot of relief with diet, hot baths, walking barefoot on the grass and also medical cannabis which may or may not be legal where you live. It certainly helps me to sleep and calms my legs. Since you have tried everything else you could give it a go. Yes many people also seem to get relief with low dose methadone. I do think we should be able to trial these things as the side effects of commonly prescribed meds are often so bad

[karr54 in reply to Goldy700]

Thanks for the reply.

I live in sunny Florida, and that is my next step. medical or not.

[Bananie123]

Wow, that read looks frightening, but I really want to try to reassure anyone who has been prescribed Gabapentin that, for me, it is a godsend. I could not be without it.

I have been on 3x300mg daily, for 5 years. I blame it for me gaining a bit of unwanted weight and being a little clumsy at times, but to have relief from r l s ( both legs, sometimes arms also ) and sleep at night is worth it.

Please do not be alarmed by Goldy's informative post, because it just may work for you too.

[jennymsolo in reply to Bananie123]

I think people need to know about the possible long term negative effects of these drugs. If it works for you, great. Or you could be like me and wake up one day unable to breathe. I could have gotten off it before the damage was done had I known.

Here in the states Pfizer has been fined billions for misleading information including being prescribed for numerous problems that the FDA had not approved it for. My allergic reaction happened over time. I've been on it for 3 or 4 years.

[gaula75]

Be that as it may, I will continue to take what works as I research everything I am prescribed, and use with caution. It is important to be informed, but I believe that in some instances, relief from RLS misery is appropriate. Fortunately, we have a choice. I choose to try to live my life as productively as possible, and w.o Gabapentin, my entire well being would suffer. Prior to Gabapentin, I spent many, many nights (and days), going almost mad and in tears and totally depressed. Thanks for your info. It is important to be aware.

[jennymsolo in reply to gaula75]

I think the biggest problem with me is the huge dose of 3600mg.

[PhoenixRising21]

I wish I knew all this before a pain clinic prescribed it for me. I ended up on around 300mg/day for 2 years. I seemed ok to start but eventually I started with intrusive thoughts, suicidal ideation and all sorts of weird stuff. I am now struggling to get through weaning off. I've dropped 25mg every 6 months and even that's really rough. I'm now on only 50mg/day and can't wait to be free.

Withdral is hell: restless legs, tingling arms, agitation, stress, aggression, depression, anxiety, frustration etc. I already had depression and anxiety but it's heightened it all. I've been taking 50mg for 5 weeks now as I dropped from 75mg and I am still struggling with the withdrawal every day.

[SueJohnson]

You have references in your post - e.g [5,6] Can you give us these?