I would like to describe my experience with pregabalin and ask for help.
I wrote on a recent thread that LFIT started about my starting pregabalin and taking 25mg the first night, 50 the second and 75 the third. I had horrible mood swings, depression and anxiety.
I was told by Sue and LFIT that I had increased too quickly but I was already at 75 (which the literature says is the "starting dose," thus my belief that I could increase to that dose quickly).
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, now 2 nights in a row, and I continue to have a dull bruised feeling in my head 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...
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 (the bin?) 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.
What are your thoughts and recommendations? I have no doctor to ask until 21 November.
Paul
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Yes, I was on ropinerole and pramipexole in the past and augmented. I have been off DAs for about 4 months. I had an iron infusion about 3 weeks ago and will recheck my levels on Nov. 18 (8 weeks post infusion.)
I do have some IR opioids that I can take as an alternative to the pregabalin. I had been taking them before but I wanted to see if I could use an alpha-2 delta ligand instead, since opioids carry such a stigma and I don't know if my new doctor will prescribe them. The IR opioids work well but only get me about 3 hours of sleep, then I wake up and have to take something else to get more sleep (kratom for instance) I think an extended-release opioid is the solution if someone would agree to prescribe it, but I thought I should prove I was worthy first by completely exhausting all other options.
I also have some clonazepam, but weaned off that to start the pregabalin. I noticed I was less sleepy during the day after getting off the clonazepam. I know what you're thinking, but I hadn't been taking the clonazepam very long, only a few weeks, and at a low dose, so I don't think my side effects are due to benzo withdrawal.
One other thought: Someone on the US RLS forum said people often take pregabalin twice a day to get a more stable level. This makes sense. I really feel my problems are due to interdose withdrawal rather than drug effect, since the nasties all go away after I take my pregabalin dose in the evening. I can really feel the anxiolytic effect in just 30 minutes and the depression goes away, too. It's just the next morning when the drug wears off that I feel horrible.
So, I might give it one more try, taking 50mg in the evening and 25mg in the morning (or maybe 25 and 25?). Plus, it might allow me to relax and nap during the day, something I can't do currently. I'm just concerned the daytime dose will make me too drowsy and mentally dull.
I guess I'm too much of a scientist. I have to find out what twice a day dosing will do (I just wish I wasn't the study subject...).
I don’t know what to say except to say I really feel for you. Please look after yourself & understand how much others care - though I know you would subsitute that for a decent solution any day
I too had a horrible reaction to this medication. I was on 150mg for a month, hoping the side effects would settle. Anxiety, panic, insomnia, depersonalization/derealization were some of the worst symptoms. I see to be able to tolerate gabapentin better than pregabalin. It took me 8 months to slowly taper off, and I still had withdrawal symptoms. Be careful with this stuff - it's no joke.
Suicide ideation is a known problematic side effect of pregabalin.. Given how are feeling, there is only one thing to be done - come off it.
I doubt any health professional would give advice to the contrary.
Some side effects may settle however yours sound too serious to persist with this drug. Do you have someone that can help you as you come off it? Fortunately you have only been on it a short time, but still reduce slowly as withdrawal can also lead to mood alterations.
As Butterflysun1 says below, I cannot tell you how incredibly sorry I am.
It has to be recognised that all these drugs are pretty lethal things really. Ropinirole (used for Parkinsons), Gabapentin and Pregabalin (used for Epilepsy) ..... I was put on Citalopram for HRT, but that is actually an anti-depressant. The list is endless.
And I do know that when those suicidal moments come, there is absolutely nothing that anyone can say or do that makes things any better. The only thing that ever helped me was the mantra "it's just chemicals in the brain making me feel like this. It's not the "real me", it's not my soul. It's an outside influence, like being injected with LSD or some other drug, which affects how I think. It's not real. It's just chemicals". x
So sorry, Paul, wish I had some useful practical knowledge to share, but can only send you very best wishes. You have lots of support of all kinds on this forum, please keep sharing if you get down. Best of luck with any further treatment. X
Really feel for you!!! This is horrid!!! I had exactly the same side effects on Gabapentin, never having suffered a days depression or suicidal thoughts in my life before! Get off it as soon as possible!!
A locum GP put me on 75mg as a starter dose for pregablin.
I actually had to go to A & E as I had terrible side effects . The hospital doctor said I had had an "out of world experience as if I was on a drugs trip " and immediately took me off pregablin
I said to the locum that I should have been started on a lower dose and his reply was "75mg is the correct starter dose"
I cannot take Gabapentin or Lyrica either - so you are not alone. I was on each for longer than you and the side effects never improved for me. I tried it twice a day and my side effects got twice as bad. In addition to what you have experienced, the weight gain I experienced was insane. Fortunately it was mostly fluid retention which subsided once I stopped those medications. But I feel for you. I now take low dose Methadone every night and have zero of the side effects I had on those other medications.
Hello Paul, what your currently going through sound absolutely horrendous and as I have no experience of the medication you have been taking I can’t unfortunately give any advice but there’s a lot of very knowledgeable people on the forum who have a lot of experience so all I can provide is sympathetic support.
I’m currently trying to come off Ropinirole, down to 4.5 mg spread throughout the day as required but I dread night. time, why does everything seem so much worse at night. On my initial post I said that if I’d known about the long term effects of Ropinirole that I would never have taken it. But now I’m experiencing the symptoms similar to those pre Ropinirole I know that my statement was not true as like someone drowning you will grab whatever you can to stay afloat.
Well Paul I’m seeing a doctor tomorrow 24 October, one I’ve never seen before and let you all know the outcome which probably won’t be much as we only get a 10 minute appointment allocation, so will probably have further consultations. But reading the various posts and the side effects the members are experiencing from alternative medications worries me greatly.
It’s good to hold hands with all our brothers and sisters who are suffering from this most misunderstood and Pernicious condition
You may be one of the unfortunately ones that have bad side effects from the drug. I think most people may be alright but it obviously isn't for everyone.
Gabapentinoids linked to serious hazards, including suicideThe study, published online in April 2019 in the journal BMJ, examined data on 191,973 Swedish residents who filled gabapentinoid prescriptions in the years between 2006 and 2013.In that time, 5.2% of them either received treatment for suicidal inclinations or died from suicide; 8.9% unintentionally overdosed, 6.3% were involved in a traffic accident or traffic-related offense; 36.7% were treated for a head or body injury due to an accident, and 4.1% were arrested for a violent crime. The researchers concluded gabapentinoids treatment was associated with:A 26% increased risk for suicidal behavior and death from suicide24% increased risk for unintentional overdose22% increased risk for head or body injury due to an accident13% increased risk for traffic violations or accidents4% increased risk for violent crime offensesOf the two gabapentinoids, pregabalin — which is the newer of the two9 — was clearly the worst, accounting for most of these adverse effects, while gabapentin — an older drug — showed “no statistically significant hazards.”Stratified by age, the risks associated with these drugs were the highest among those aged 15 through 24, and the risks were dose-dependent, so the higher the dose, the greater the risk. According to the authors:10“This study suggests that gabapentinoids are associated with an increased risk of suicidal behavior, unintentional overdoses, head/body injuries, and road traffic incidents and offences. Pregabalin was associated with higher hazards of these outcomes than gabapentin.”As is often the case, the risks associated with these drugs have only become apparent as their usage has increased. Dr. Derek K. Tracy of Queen Mary’s Hospital told Reuters that:11“While it’s not clear why prescribing of gabapentinoids has grown so rapidly … anecdotally it appears that many doctors regarded them as relatively effective and with a low side effect profile.As we accumulated more information over time, it has become clear that this is not the case, and most recently there has been a countering drive to try reduce their usage as their harm profile came more to the fore.
Thank you everybody for all your support. My gratitude and hyperemotionality, brings me to tears.
Yes, for me this is the devil's drug. I tried the twice daily dosing (25mg at 9 PM and 25mg at 6 AM) but the morning dose just delayed onset of depression until it wore off in the afternoon, at which point the depression hit hard and I found myself spontaneously crying.
And all day until afternoon I was sedated, spaced out and brain-numb from the drug. There was no way I could drive or do anything at all hazardous.
I'm done experimenting and will wean off and never take this drug again.
It helps to know that others have had bad side effects with this drug, and I'm not crazy, because I had just been reading about all the people taking it more or less successfully for years. And Goldy's report on the risks of gabapentinoids is very sobering.
Peter (HipHop), your experience sounds equally horrendous and I wish you the best of luck with your 10-minute doctor appointment (are you in the US?). I am very familiar with the10-minute doctor appointment--that was how I got prescribed pregabalin with no warnings about possible side effects.
Thank you all again. It's really only the people on this and the rls.org forum who truly understand what we are going through and can offer meaningful support.
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