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Anyone know about this research that warned against taking gabapentin and pregabalin?

grandpianoman profile image
14 Replies

I just got off the only dopamine agonist I could even handle, but I didn't have any idea what to turn to, as one dose of gabapentin caused such dizziness that I wouldn't take it again, and Tramadol (pain reliever) caused other problems, so I went off that after two weeks. However, I've been reading in this community of others taking gabapentin for years with no problems after an initial rough adjustment, so I am considering taking it again, BUT! A couple of years ago, someone named Goldy posted research in this forum that warned against taking it, because of what it does to the brain. I'm asking if anyone checked out these research articles, and if so, what did you find? Here's a copy of Goldy's post:

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...

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grandpianoman
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14 Replies

Thanks for sharing this.

Here's a link to Goldy's post if anyone wants to see it

healthunlocked.com/rlsuk/po....

Here's a link to the source of the web page that Goldy copied information from.

healthy-holistic-living.com...

The web page Goldy copied from seems to have copied the information from yet another source. Or sources.

It appears that these further sources contained references to the sources from which this original information was copied. Using the Vancouver referencing system - the numbers, but healthy living doesn't identify the refernces in full. - Nor are the sources that Healthy Living copied from referenced by Healthy Living.

I'm losing track now, must be the gabapentin!

In any event, this doesn't give me a good impression of Healthy Living. They copied this information but don't give any way you can check it's veracity or how accurately they've copied it.

So that's a dead end.

I will endeavour to track down these 2017 studies.

Some of the side effects of gabapentin as listed in the holistic living article are well publicised. There are also warnings about the potential for respiratory distress caused by the ligands by both NICE in the UK and by the FDA in the US. Such cases are quite rare and it applies to folk with pre-existing respiratory problems or taking other respiratory depressing drugs, e.g. opiates.

Watch this space.

grandpianoman profile image
grandpianoman in reply to

Brain shrinkage is well known? This copied article is the only time I've ever heard of alpha2delta ligands doing that!

in reply to grandpianoman

I support the idea of a holistic approach to health i.e. looking at all aspects of a person. I also support the use of natural methods of dealing with health issues where this is appropriate, safe and effective.

My opinion iof the article you referred to is this

- Although it uses the term "holistic" it doesnt actually appear to be.

- Rather than offering remedies that can complement allopathic medicines it is aggressively pushing alternative remedies.

- Although it exhorts the reader to explore available scientific research, it doesnt do that well itself, rather takes vert little of it and takes it out of context.

- Rather than being objective, emotive language is used "death" and "shrinkage".

I agree that the big pharma companies are making big fat profits at the expense of people who need their medicines, but that is not a reason for not taking these medicines.

The attack on the pharma companies impies that they wrongky solf the ligand for pain relief, implying that they don't relieve pain. However, they DO and they ARE licensed for it.

Overall, the article seems basically to be a an advert.

Note the apparent claim that you can have MS yet trek to Machu Pichu without pain due to a magnesium oil.

Also note the statement "I don’t often align myself with products but this is one that I just had to share!"

I don't intend to read this publication again, so I've no way of checking the veracity of that "often".

I did spend several hours yesterday "exploring available scientific evidence".

There are side effects to the ligands, they CAN be severe in some cases, but it's a matter of scale, i.e. how many people suffer these effects and to what extent.

Im sure there are a very large number of people with fibromyalgia, neuropathy, epilepsy and RLS for which like would be unberable without taking a ligand.

That doesn't exclude using magnesiaum oil, valerian, vitamin supplements, diet etc AS WELL

Zbirth1 profile image
Zbirth1 in reply to

As usual your input is invaluable Minerva. 😻

For anybody's further information.

-

The BNF (UK national prescribing guidelines) give this warning about gabapentin,

-

"Gabapentin has been associated with a rare risk of severe respiratory depression even without concomitant opioid medicines. Patients with compromised respiratory function, respiratory or neurological disease, renal impairment, concomitant use of central nervous system (CNS) depressants, and elderly people might be at higher risk of experiencing severe respiratory depression and dose adjustments may be necessary in these patients"

This is a verbatim copy of a warning issued by the UK Medicines & Healthcare products

Regulatory Agency (MHRA)

If you wish to check the accuracy of this here's a link

bnf.nice.org.uk/drug/gabape...

This is repeated on a UK Government page which is easier to access than the MHRA site

-

gov.uk/drug-safety-update/g...

-

This information was published on the 26th Oct 2017.

-

The US Food and Drug Adminstration (FDA) issued a warning about gabapentin and pregabalin on the 19th Dec 2019.

-

It states -

-

"serious breathing difficulties may occur in patients using gabapentin (Neurontin, Gralise, Horizant) or pregabalin (Lyrica, Lyrica CR) who have respiratory risk factors. These include the use of opioid pain medicines and other drugs that depress the central nervous system, and conditions such as chronic obstructive pulmonary disease (COPD) that reduce lung function. The elderly are also at higher risk."

also

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"There is less evidence supporting the risk of serious breathing difficulties in healthy individuals taking gabapentinoids alone. "

-

This is a verbatim copy. If you wish to check the accuracy of this here's a link

fda.gov/drugs/drug-safety-a...

The evidence (according to the FDA)

"Among 49 case reports submitted to FDA over the 5-year period from 2012 to 2017, 12 people died from respiratory depression with gabapentinoids, all of whom had at least one risk factor."

My interpretation of this is that of all the people taking the ligands over a period of 5 years, some had a risk factor. Of those that had a risk factor, 49 had (breathing) problems and of these, 12 died.

Further evidence is offered by the FDA with reference to two randomized, double-blind, placebo-controlled clinical trials in healthy people, three observational studies, and several studies in animals.

Of note one trial

"showed gabapentin alone increased pauses in breathing during sleep."

My interpretation of this that for people who have some pre-existing form of sleep apnoea, gabapentin made it worse. It doesn't identify if this is "obstructive" sleep apnoea, "central" sleep apnoea or both.

The FDA lists a bibliography of these studies so that the veracity of the information can be checked.

I don't think it's inaccurate of me to say, the Healthy living web page highlights anti-pharmaceutical information apparently out of context and gives no easy means of the reader verifying the accuracy of this information.

This is followed by adverts for (presumably) alternative health products.

Make your own judgment.

My own relationship with gabapentin is this. I admit to being biased.

I had lower back pain and neuropathic symptoms in my left leg for some years. An MRI in 2017 showed a compressed nerve root in my lumbar spine and general narrowing of intervertebral spaces. My GP prescribed amitriptyline (I didn't know about this and RLS!).

In Aug 2018 the pain down my left leg became so acute that I couldn't stand or walk for more than about 30 seconds before it became unbearable. It also conttibuted to my already chronic insomnia. My GP prescribed a short course of Naproxen daily and Codeine Phosphate as necessary. The codeine didn't touch it.

He also stopped the amitriptyline and prescribed gabapentin.

I checked out the gabapentin and was horrified at the possible consequences. The pain and debilitation it was causing me was the deciding factor. I took it.

As the pain subsided, I once again, became more aware of the augmentation I was suffereing due to pramipexole. I was averaging less than 3 hours sleep a night - month after month and unable to nap any time of the day, instant twitching!

Thanks to THIS forum I became aware that augmentation could be treated and I didn't have to suffer it and my dependency on pramipexole. I was also surprised to discover that gabapentin could be effective for RLS. In Oct 2018 then, I started reducing the pramipexole.

I stopped taking pramipexole altogether in June 2019 and have now been taking gabapentin since Aug 2018.

At first it made me drowsy and dizzy, but not falling over dizzy. These faded.

Of the things I attribute to gabapentin, now I sometimes experience slight dizziness, in the morning, which fades quickly and I'm never reallty aware of it. Sometimes I stumble a bit, (gait disturbance) but have never fallen. I also have numbness in the soles of both feet which doesn't help. Sometimes I find it difficult to find the right words for things, but not significantly, maybe once a week. Sometimes things look a bit blurry in the morning.

Otherwise I don't really experience any of the other side effects listed by healthy living.

From sleeping an average 3 hours a night or less in 2018, I now sleep at least 6 hours. the last 3 nights 8 hours, one night last week 10 hours. I occasionally have insomnia for other reasons. Gabapentin is known to reduce anxiety.

From having severe RLS symptoms throughout every day due to augmentation, I now rarely have any at all, perhaps briefly for less than 30 seconds about 2 - 3 times a week. My nerve pain is still present but under satisfactory control.

Other people, I have read, are not so lucky, Gabapentin isn't for everyone. Sometimes I think people expect it to work instantly and without any side effect, that's not realistic.

It is an individual's personal decision about whether, based on an accurate interpretation of the most credible and reliable information possible. This includes a judgement about how the information applies to you and what the scale, size, probablity of any risks are.

I was impressed by this snippet, copied verbatim from the FDA warning web page (referenced above)

"All medicines have side effects even when used correctly as prescribed, but in general the benefits of taking a medicine outweigh these risks. It is important to know that people respond differently to all medicines depending on their health, other medicines they are taking, the diseases they have, genetics, and many other factors. As a result, we cannot determine the likelihood that someone will experience these side effects when taking gabapentinoids. Your personal health care professional knows you best, so always tell them about all other medicines you are taking and if you experience any side effects while taking your medicines."

Amrob profile image
Amrob

This is an interesting discussion on the quoted 2009 "Cell" study

google.com.au/amp/s/lifesci...

in reply to Amrob

Nice One, thanks.

I am not a mouse

and

Maybe the gabapentin's curing my aspergers.

Parminter profile image
Parminter

Thank you.I was looking for just such information.

Operabab profile image
Operabab

Hi

I posted a few months ago that after having taken pregabalin for approximately 6 months I started getting the odd sharp pain in my head and the realized my eyesight was deteriorating. When your not getting great sleep it seems to take longer to realise the problem. I have been to the eye infirmary now several times and they have confirmed that I have lost my peripheral vision which they believe maybe down to the pregabalin. Now some 5 months later it is still no better and I really feel little hope of it returning

I'm extremely cross with myself as I feel I should have noticed it sooner and that I have inflicted this on myself. Had I been warned about the possibility of these side effects I may have.

I am now frightened to take anything else and manage badly with zopiclone.

Please be aware of the dangers of some of these drugs

in reply to Operabab

Hi, I recall your post and I'm very sorry this happened to you and that you don't appear to have recovered.

I can understand then that you woud wish to warn others of the potential risks of taking an α2δ ligand.

Following grandpianoman's post, I have spent some hours trying to track down the the "available scientific research" which the article he refrred to exhorts the reader to do.

The evidence of the damage that the ligands can do is quite apparent and I note paticularly their reported effects on vision. My search couldn't be decsribed as exhaustive, but to date I've found studies that demonstrate that the ligands can cause ambyopia and diplopia.

Blurry and double vsision.

I experience these myself on occasion. but it comes and goes and I barely notice it.

As yet, I've found nothing to suggest that these effects aren't reversible and nothing about your particular problem.

This, admittedly doesn't prove anything in itself, but it does suggest that your reaction to the ligand is not common.

I am really sorry that this happened to you, that you didn't spot it early enough and that you're now left with fewer options for dealing with your RLS. An opiate, if yiou can acquire a prescription may be a good option for you.

Zbirth1 profile image
Zbirth1 in reply to

Hhhmmmm. I have been on Neurontin for 15 years or more for diabetic neuropathy & take 1,200 mg a day. The past couple of years my vision becomes very blurry Yet my eye exam show no change. Now I have to wonder if it might not be related in someway to the Meds 🤔

in reply to Zbirth1

It possibly is. The last time I had a 2 yearly eye exam, I had it repeated several times because the lenses they prescribed weren't working and in fact, the prescription changed significantly 3 times with only a couple of months between exams. Previously it hadn't changed much for a decade. I did tell them that I was taking gabapentin, but I don't think they took that into account.

This could also be an issue at my next exam, I intend to get an appointment as late in the day as possible.

Marlayna profile image
Marlayna

Interesting, thanks for sharing. I tried gabapentin for a few weeks and had terrible side effects. I recently tried Lyrica for almost 2 weeks and had even worse side effects. I’ve made the decision to stop all drugs including Tylenol. I am taking a lot of iron, niacin, and probiotics. I have not had A serious bout of RLS in a few weeks.

What worries me about gabapentin and pregabalin is that there seems to be an ever increasing body of patients who are now emerging to report long term negative responses to those drugs. The facebook support page is filled with very well expressed, non-hysterical descriptions of pretty awful side effects - some permanent. My own response (weird hot patches on my skin which happily disappeared as soon as I discontinued the drugs) was not one that anyone else had recorded that I could find.

This reminds me so strongly of the early days when augmentation was being reported in relation to dopamine agonists. The symptoms reported by patients and the difficulty of discontinuing were dismissed by the medical community for so long and this led (and continues to lead) to such suffering for a very high percentage of those prescribed the drug. It does seem that once a drug has been licensed there is a built in bias against accepting patient reported negative impact.

I accept that my observations are not based on scientific evidence but the fact that current scientific knowledge does not support a widely reported situation does not mean that it is not real (the tragic fate of Ignaz Semmelweis springs to mind). I appreciate that those rls sufferers for whom these drugs afford considerable relief are faced with a difficult dilemma if they dwell too closely on the negative experiences of others but I'm almost glad they didn't work for me.

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