Horrible side effects on pregabalin

[Dr.Placebo]

First, I see my username a lot on this discussion board and I apologize if I am talking too much. Now I feel like I will be whining, but I wonder if anyone has any advice they can give about what I should do with my pregabalin.

I posted on the UK RLS site, adding on to another person's thread about pregabalin side effects. I mentioned that I had started (8 nights ago) at 25mg the first night, 50 the second night and 75 the third and was having emotional liability, anxiety, depression. Two people immediately wrote that I had increased way too fast--they recommended increasing by just 25mg every 4 weeks. One also said it took 6 weeks for the side effects to abate if one continued at a stable dose.

I was already at 75 so I tried to stay there but continued to have shakiness, brain fog, inability to think or initiate activities, irritability, attacks of anxiety and, most importantly, profound depression and wanting to die. It seemed like I spent (spend) a lot of time convincing myself not to commit suicide.

Given the above, I decreased to 50mg after 2 nights at 75, and have taken 50mg 2 nights in a row now. I continue to have a dull bruised feeling in my head, mental dullness and profound dysthymia, inability to feel joy in anything, even though the weather is beautiful and I continue to ruminate on suicide. In the mornings I often just sit with my head between my hands and whimper. This is not "me". I hope...True, I have had suicidal thoughts frequently even before the pregabalin, but this is much worse than usual, and is accompanied by a real feeling of depression whereas previously it was, in my mind, just a means of "escape" from my situation.

Looking back at my diary I see I have only been on the pregabalin for a total of 8 nights as of today. But this is my second attempt to take pregabalin. Last time, a month ago, I aborted after 3 nights because I became too scared to take another dose due to the suicidal thoughts.

I have tried gapapentin on 2 different occasions. Both times I aborted after 1 or 2 nights due to side effects. I can't remember exactly what the SEs were (my memory is shot) , except I know I threw the bottle of gabapentin in the trash which is something I rarely do with meds that I stop taking.

I am really trying to give the alpha-2 delta ligands a fair try before concluding that I have refractory RLS and will only get relief with opioids. But I am afraid to stay on the pregabalin much longer because it will just get harder and harder to wean off the longer I take it.

I don't understand why I react this way since so many people on both forums seem to take these drugs, often at high doses, successfully.

What are your thoughts and recommendations? I have no doctor to ask until 21 November.

Paul

[Polar Bear]

Paul, I am so sorry you feel so bad.
Is it really not possible to see your doctor asap in a situation like this.
(Our NHS system has many faults but generally we can see our GP the same day).
I take Pregabalin at the max daily dose for neuropathy and RLS together with Codeine. Fortunately I'm unaware of any ill effects (but perhaps I no longer know the real me) and my increases were higher than yours. My understanding is that pregabalin should be taken morning and evening to keep the level stable.
However, you know we are all so different. I also read on a UK Lyrica (pregabalin) site of the horrors of pregabalin including how you are feeling. This is your second attempt to take pregabalin. It is not working for you.
Most RLS moderate/severe sufferers will eventually find that opioids are the answer for them.

In your position if unable to see your doctor I would wean down/off.

[Dr.Placebo]

Betty, I really think my problems are due to interdose withdrawal, since after I take a dose of pregabalin in the evening I feel pretty good. I can feel the anxiolytic effect in about 30 minutes and the depression goes away, too. It's just the next day, when the drug has worn off that I feel horrible. So I might give it one more try, taking a 25 mg dose in the morning, and see what happens. I am just concerned that taking it during the day will cause drowsiness or mental dullness. Although it would be hard to tell since sleep-deprivation does just that.

[Polar Bear]

I hope this works for you.
I meant to say previously, never feel than you are whining or talking too much. Every question is worthwhile.
Also, you never know when a question or a comment may be relevant to another reader.

[Dr.Placebo]

No, twice daily dosing didn't work for me. The morning dose delayed the onset of depression until it wore off in the afternoon, at which point I became profoundly depressed again, spontaneously crying while reading a book about someone having a beautiful experience. Until then I was sedated and brain numb from the drug and not functional.

I am weaning off and will never take this drug again.

[Polar Bear]

I wish you well with your weaning and hope you are successful in future symptom treatment. It's a challenging journey.

[ViewsAskew]

I question how many people react favorably to this class -so many people report here that they aren't working. That said, many of us here, as with me, started with dopaminergics and the alpha 2 delta ligands do not work well for us.

At the point most of us get here and our lives have been so negatively impacted, we have little tolerance for crappy treatments! I spent years not sleeping - at some point, you just want to feel OK.

[charles]

Paul.............I could have written your post verbatim, regarding pregabalin , & gabapentin's side effects. Hardly a day goes by without thinking suicide is the only way out, feelings of joy are almost nonexistent.
When I think this huge, horrible , life draining situation cant get any worse, I find myself at my specialist's appointment, trying again, and again to bolster my argument against Alpha 2 Delta Ligands, most of the time it seems as though it's falling on deaf ears. I'm convinced the only thing worse than Alpha 2 Delta Ligands were the Dopamine Agonist which pretty much drove me to the proverbial edge where I sat until I began taking low dose Opioids.
I absolutely understand the stigma surrounding Opioids, however, and I truly mean however, FOR ME , and I stress FOR ME, low dose Opioids work beyond a shadow of doubt.
Some very minor side effects at the beginning of taking Opioids soon resolved themselves. Now, at this juncture in my life, I may be faced with the almost impossible task of finding another physician who see's, and understands the favorable benefits of Opioids for RLS, and is not intimidated by the negativity surrounding Opioids.
Opioids restored my hijacked life (by Pregab & Gaba P ) , and because of my physicians growing reluctance against Opioids, and possible retirement, I now feel an impending storm on the horizon............Here we go again !

Charles

[Polar Bear]

charles - I will reiterate what you say about opioids. ""FOR ME , and I stress FOR ME, low dose Opioids work beyond a shadow of doubt.""

[Rustsmith]

I may be faced with the almost impossib ... g Opioids.

Charles, I went through that in August. I spent three weeks calling primary care providers looking for one that would be willing to write my monthly opioid prescriptions under the direction of my RLS specialist neurologist (who is a professor at the state medical school). I tried ten different clinics, including a pain management specialist and every single one of them said that they would be happy to accept me as a patient so long as they could exclude RLS from my care. I finally found a PA who was willing to write my prescriptions as well as serve as my primary care provider. He also provides care at an addiction treatment center and understands RLS enough to realize that my dose is tiny by comparison.

If you find a provider who appears to possibly be willing to write prescriptions, try providing a copy of this publication by some of the leading RLS experts. It might be enough "education" for that doctor to accept that opioids are the proper way to go. https://www.mayoclinicproceedings.org/a ... X/fulltext

[badnights]

Paul/Dr.P, I got suicically depressed on gabapentin, but not pregabalin. I don't think mine was rebound depression; it built up gradually over months. I got rid of the Suicide Drug but later added pregabalin 75 mg. I was so scared of getting that kind of depressed again that I only took it 5 days a week, but eventually I got tired of not sleeping well two nights a week.

I took it every day no prob; but when I increased it to 150 mg, I thought I was getting depressed again. It was not the same as the numbly suicidal affect I got from gabapentin, so it may have just been my fear combined with my "normal" come-and-go mild to moderate depression. I dropped back to 75 mg and there I stay.

I'm glad you decided to stop and never touch it again. If you hadn't, that's what I would have recommended. There is simply no benefit that's worth it when you lose yourself like that. What use no symptoms if you're dead?

[badnights]

Charles - me too. I augmented on DAs in days, & I got suicidal on gabapentin which didn't even solve the symptoms anyway even at 1800-2400 mg /day. When I was finally given hydromorph contin, I began to get my life back.

[Frunobulax]

I mentioned that I had started (8 nights ago) at 25mg the first night, 50 the second night and 75 the third and was having emotional liability, anxiety, depression. Two people immediately wrote that I had increased way too fast--they recommended increasing by just 25mg every 4 weeks. One also said it took 6 weeks for the side effects to abate if one continued at a stable dose.

I took Pregabalin for 3 months with up to 150mg a day. It did nothing for my RLS, but I developed very severe depressions which promptly disappeared when I tapered it and went back to an opioid.