Gabapentine

[cjCardio53]

Any PD peeps that used gabapentin for pain in body? Good/bad effects? People have been telling me this is a NASTY drug with side effects.

[Esperanto]

Patients and physicians should understand that the drugs have only limited evidence to support their use for many conditions. There may be harmful side effects such as drowsiness, dizziness and difficulty walking.I took them for the neuropathic pain in my peripheral neuropathy. However, it enhanced PD symptoms, particularly daytime sleepiness and brain fog. The medicine was worse than the symptoms and I stopped after a month.

[cjCardio53 in reply to Esperanto]

I am "leaning"towards not taking. I don't want to start taking ANOTHER med. I have been using infared lights, yoga, stretching, e-stim, using ibprofen , massage...Thx for reply.

[MarionP in reply to Esperanto]

You used a plural. Does that mean you had more than one medication or just gabapentin?

[Esperanto in reply to MarionP]

After my not so good experience with Gabapentin through my GP, the neurologist prescribed Pregabalin at a lower dosage after six months. Although both drugs (from the same family) need a longer habituation period of at least a month, the effect was the same and I stopped after some weeks. It was also out of recalcitrance because it was again pain relief and did not address the cause and improvement of the PN.

[cjCardio53 in reply to MarionP]

Rytary

[pszak72 in reply to Esperanto]

I have been taking gabapentin , 100mg, nightly. It calms neuropathy in my feet and lower legs. I do however experience brain fog at times and sleepiness during the day. Without gabapentin at night I cannot sleep because of tingling sensations and achy legs.

[Esperanto in reply to pszak72]

Too bad gabapentin has to be used as a course of treatment and only after long term use results effekt incusive side effects. Better would be ad hoc pain relief if the situation is unbearable. Don't know if that exists for our neuropathy complaints.

[CaritaP]

Good effects. I take 4 x 300mg, allowed to take 5x, against leg and foot pain.

No side effects, it actually stops tremors as well. But you have to be careful not to overdose or take late in the evening, as it can make you real dizzy and affect balance.

[Goodenough1234 in reply to CaritaP]

NEXT time you drink too much or are having withdrawal symptons, take Gabapentin and you will have no after effects of your behavior,

[Sydney75]

Husband takes 900mg 300 at dinner 600 pm higher doses impact him cognitively. Have read very difficult to stop taking. As for pain not great, but he is having surgery soon bc severe compression of nerve, maybe better if there is not that type of cause. After the opioid crisis this is drug recommended.

This drug is related to epilespsy drugs DO NOT stop suddenly seizures have been reported. Taper very slowly there are 100mg strength available to reduce drug if you want to stop taking.

[cjCardio53 in reply to Sydney75]

Thanks for the info...I am leaning towards no t taking...

[MarionP in reply to cjCardio53]

I always wonder when people ask a question here about a specific drug that has been prescribed, if they have asked or been told the reasons for prescribing versus other medications, and also if they have been decently informed about the trade-offs or downsides or risks, and also if alternatives exist and what those profiles are, and also maybe if the patient is of a mind to try to reason out all this and participate in the decision-making, before leaving the prescriber's office.

[Sydney75 in reply to MarionP]

I think MDs downplay side effects because of limited drugs available for pain. It is up to the patient to do the research. For perspective in 2004 gabapentin was prescribed 18 million times in US. In 2020 it is 50 million prescriptions. For patients with chronic pain it is now the go to drug. MDs downplay the difficulty some people have getting off gabapentin. For some types of pain it is a lifesaver as there is not much else out there, unless patients move to a pain clinic that will prescribe opiates. What is troubling is most MDs don't tell patients to taper this medication. I guess a lower dose (100mg) it may not matter. Pain sucks, and many alternative treatments are not covered by insurance $$.

[cjCardio53 in reply to Sydney75]

Like 'Eastern" medicine...massage, acupuncture, herbs etc. not covered by insurance. Thx for input.

[MarionP in reply to Sydney75]

Anything having to do with brain and psychoactive, they don't talk about tapering and addiction mechanism (i.e., extended intense withdrawal and rebounds). I once knew a psychiatrist that said a proper taper of most antidepressants, whence taken for years, should take 12 months OR LONGER for tapering, and he was the only once out of perhaps 100 that I've known, worked for, or been treated by. Specialist. Just that one, no others.

[donheff]

I started occasionally using a low dose (100mg) of Gabapentin for RLS (restless leg syndrome). It came to my attention because my wife has used it for RLS for a while. She does not have PD. I discussed it with my MDS and mentioned the rumors of bad side effects. She was comfortable with my trying it but recommended that I first try taking an extra Sinemet when I experienced RLS instead. She noted that gabapentin is sometimes used for PD but Sinemet is much more effective.

I tried taking an extra Sinemet several times, but it did not affect the RLS. So I tried my wife's Gabapentin - it worked well and also seemed like a useful general sleep aid. From this experience, I assume that Gabepentin's effect on RLS (and, presumably on pain in general) is working thru different channels than dopamine.

Another aspect of RLS was that, for me unfortunately, it is exacerbated by alcohol. So I have had to cut out wine with meals and my occasional two fingers of bourbon. That was a tough loss, but The RLS is significantly reduced. I currently use Gabepentin only once or twice a week.

[daughter-Advocate in reply to donheff]

How much do you take now? Are you still at 100mg?

[donheff in reply to daughter-Advocate]

Still at 100 but I have only been using it for a couple of months.

[MarionP in reply to donheff]

You know yours is a very helpful entry, appreciate it very much, it's added a lot of useful experience information to the picture.

[cjCardio53]

ok, so u don't take daily? Does it lose it'a "effectiveness" not taking daily? "I read" it takes up to 3 weeks to "get into" your system?? (I am freaked out by the side affects)

[Manypony]

I also took it intermittently with good results 300 mg for “emergencies” which included being able to enjoy an afternoon in public 😕 a new naturopath suggested taking it (300mg) every afternoon and it is a relief! Naturally I’d rather not use it! I take mucuna and am experimenting with adding carbidopa for better effect ( I prefer a 30% Ldopa to the more refined 99%) that is more popular

[cjCardio53]

I use my Apomorphine/Apokoyn for "emergencies," really helps....the Gabi was going to be used for my pains in my neck, shoulders and back....my neuro said basically my nerves are causing my pain from stiffness, dyskinesias....thx for your input.

[BeedieBird]

I take nightly for neuropathy in my feet, which only manifests at night as burning pain. helps me sleep, as it has a calming effect on nerves. Never any negative side effects for me, but I don't take during the day. I never wake up groggy. 300 mg at bedtime.

[cjCardio53 in reply to BeedieBird]

Thanks for sharing.

[Newbyhere]

For my now deceased husband , ( a PD person), gabapentin was a life saver. Prior to using gabapentin he could not sleep at night due to twitching, jerking, acting out dreams, restless leg syndrome, etc. Gabapentin allowed him to sleep for which we were both grateful. He only took it at bedtime

[PalmSprings]

I take Gabapentin for my neuropathy pain and tingling. It seems to keep the symptoms at bay. The pain and tingling were my most annoying symptoms. I really don’t know about the side effects anymore and I’m not sure if there is anything else out there for what I was dealing with? No help from my neurologist.

[Rscott in reply to PalmSprings]

What part of your body were you feeling the pain and tingling? I developed something similar all over. The combination of gabapentin plus Cymbalta finally gave me some relief though not perfect. I do work out every day which seems to help.

[PalmSprings in reply to Rscott]

Like you, I felt pain and tingling all over my body. It would keep me up all night, shifting and turning trying to make the feelings tolerable. I have heard of Cymbalta. I am going to ask about that next time I see my doctor. Good luck to you and hope the best for you!

[Following_closely]

I take 600 mg for REM sleep disorder. As with Newbyhere's husband, I have found it to be very helpful for treating that issue. I take it a few hours before I go to bed. It does make me drowsy, but I don't have any trouble waking up in the morning and haven't noticed any daytime drowsiness. On the other hand, I also have neuropathic pain, and I can't say that I experience less pain after taking gabapentin than I do earlier in the day.

[chartist]

I often here people say that Gabapentin can have some fairly serious side effects. Here is a list of side effects from GABAPENTIN :

drugs.com/sfx/gabapentin-si...

Commonly reported side effects of gabapentin include: ataxia, dizziness, drowsiness, fatigue, fever, nystagmus disorder, sedated state, and viral infection. Other side effects include: blurred vision, diplopia, peripheral edema, tremor, amblyopia, irritability, and xerostomia. Continue reading for a comprehensive list of adverse effects.

Applies to gabapentin: oral gabapentin conventional capsules and tablets, oral gabapentin conventional oral solution, oral gabapentin enacarbil extended-release tablets, oral gabapentin gastroretentive tablets.

Side effects include:

Children 3–12 years of age receiving conventional (immediate-release) gabapentin as adjunctive therapy for partial seizures: viral infection, fever, nausea and/or vomiting, somnolence, hostility.

Adults and children >12 years of age receiving conventional (immediate-release) gabapentin as adjunctive therapy for partial seizures: somnolence, dizziness, ataxia, fatigue, nystagmus.

Adults receiving conventional (immediate-release) gabapentin for management of PHN: dizziness, somnolence, peripheral edema.

Adults receiving gabapentin gastroretentive tablets for PHN: dizziness.

Adults receiving gabapentin enacarbil for PHN: dizziness, somnolence, headache.

Adults receiving gabapentin enacarbil for restless legs syndrome: somnolence/sedation, dizziness.

For Healthcare Professionals

Applies to gabapentin: compounding powder, oral capsule, oral solution, oral tablet, oral tablet extended release.

General

The most common adverse reactions associated with the use of this drug were dizziness, somnolence, and peripheral edema.[Ref]

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Art

[Rscott in reply to chartist]

I used it in pretty high dosage with no side effects. For me there was no choice. I had to do something for pain.

[Rscott in reply to Rscott]

Although Gabapentin by itself didn’t help, using in conjunction with Cymbalta did.

[MarionP]

A lot of useful feedback in this string, I think I would flag it for future reference.

[Nguflh58]

Gabapentin is used off label for lots of things. In made me very very disinhibited. Helps with sleep and anxiety and migraines I had, but for me too many psycological side effects.

[beehive23]

it has a moderate interaction with carb/levo.....see interactions...hang tough

[Rscott]

I developed neuropathy all over my body a few years after Diagnosis PK. It didn’t work by itself but in conjunction with Cymbalta I was finally able to get some relief. A couple years later I switched to Lyrica, which gave similar results, but fewer capsules per day

[Foodteacher]

My husband has pd and takes 2 at night for RLS and sleep . It has really helped him. He takes two 300 mg capsules. It works well for him.

I don’t have pd but have trigeminal neurelgia and take 4-5 300 mg capsules a day. I used to take 6 . It helps with pain, when I try cutting back I get more pain.

[cjCardio53 in reply to Foodteacher]

So just at night...like today my pain isn't REAL bad, but I know it's there..and some days it is a 8/10 in my lower back, neck and shouders. It moves around. i asked my neurologist if I should see an ortho, she said "no," as he feels this is a "neuralgia" pain from PD,.

[Foodteacher]

Is it your dr who wants you to try it? Gaba is used for so many things. Sure it’s one more pill but what if it helps? I know a few non pd people who use it successfully for a number of things. You could start out slow. If you get side effects go off it slowly according to your dr. Hope it all works out . I’m so sorry for your high pain levels.

[cjCardio53 in reply to Foodteacher]

Me too. The pain moves around which sucks....

[Natgal]

My husband took Gabapentin as part of his prescription cocktail. It caused his creatine levels to increase and he was borderline needing dialysis. We reduced his intake and monitored his kidney function. The month that he died I learned that Gabapentin causes memory loss. He had a duel diagnosis: Parkinson's and Lewy body dementia. I honestly believe that ALL of his meds made his condition worse. I am learning about natural protocols that are truly helping Parkinson. I only wish I knew this information sooner.

[daughter-Advocate in reply to Natgal]

"I honestly believe that ALL of his meds made his condition worse."

I believe this too. Many symptoms can be medication-induced or worsened by them or it was all an underlying issue that the docs never bothered to dive deeper.

[cjCardio53 in reply to Natgal]

thx for sharing...sorry about your husband.

[Foodteacher in reply to Natgal]

I am sorry about your husband❤️I never knew GAbapentin causes memory loss or could raise creatinine levels. Thanks for sharing your story. I am going to rethink how much I take of this medication.

[Santana35]

I recently Started taking gabapentin as a sleep aide to reduce my neuropathy at night when I was trying to sleep. That it made me foggy brained and sleepy were bonuses.

When I wake up in the morning, the foggy brain is gone, and my feet don’t hurt and I can get up and start my day. I’m a fan!

[Grannyfan]

I tried gabapentin for about four months as a last resort to help with pain from lumbar stenosis and PD, also peripheral neuropathy. I really didn't think it alleviated my pain at all. I also felt I lost memory, and overall became weaker than before. It's now a year after my trial with gabapentin and although I know the progression of my health problems may be the reason I am worse physically than before; I can't help but feel I lost some ground while using this drug.

[cjCardio53 in reply to Grannyfan]

Thanks for sharing.

[Reetpetitio]

I would look into taking Milkthistle to support your liver if you do take Gabapentin. It's certainly useful for some people (my brother takes it for phantom pain) but it is strong on the liver.