Pregabalin any positive comments
Posted , 8 users are following.
Hi everyone, I have just joined this community, and also have been on pregabalin for 3 months, 25 mg x 3 / day. I have been taking it for anxiety and depression on the advice of my psychiatrist. This dose, I am told is very low, and as it is having little effect, have been advised to increase it. Looking at other sites the responses are very positive.
I would be interested on other people's thoughts, whether it has helped them or not?
0 likes, 21 replies
richard23477 william74513
Posted
Hi William. I don't know anything about Pregabalin for anxiety but I know that a recurring theme on this forum is the problems associated with long term use / side affects and withdrawal problems.
However, I was taking 600mg /day over about 2 months for chronic sciatica and suffered no problems at all. I withdrew the tablets completely in less than 2 weeks. All good! However, this doesn't seem to be everyone's experience by far!
william74513 richard23477
Posted
Thanks for replying Richard. Yes, all our physiology differ from each other. I'm not in a good place after trying many alternatives to progabalin so I was professionally advised to take it.
I have had some meaningful advice so far which has left me to minds. All advice is welcome
Thanks once again for replying, All the best.
William........uk
matts4912 william74513
Posted
William,
I want to tell you about my experience. I was started on 50mg twice a day over Christmas, and this was then reduced to 25mg twice a day after 4 days as the side effects were very harsh. When I stopped after 1 week, all hell broke loose. The depression that it caused was like nothing on earth. It got me to the point of counting my citalopram to see if I had enough to "fall asleep and not wake up", which is much further than depression has pushed me before.
On research you will find that the drug trials that Pfizer undertook for this drug had the data falsified. Just google for Dr Reuben and you will see the extent of it. His career collapsed and he went to jail for this. The drug was still left on the open market.
Also be aware that the trials used patients for pain management - NOT anxiety - so the data which states that 1 in 480 had suicidal tendencies applies only to such patients and not those who took it for anxiety. The same trial was later undertaken by a team in New Zealand who found that those who took the drug who had a history of mental illness had a 1 in 117 chance of experiencing what I did. These odds are not to be taken lightly. If you are not experiencing them during start up, it is possible that you will when coming off them, even after a few days. The longer you are on them, the more likely this is.
Now you may be one of those that are not affected, which I sincerely hope that you are. But I need to spread my story to prevent other falling into the same trap. What I have said is 100% verifiable and the absolute truth.
Please think carefully as to how you proceed. I wish you all the best.
God Bless,
Matt
william74513 matts4912
Posted
Thanks Matt for your experience on pregabalin and the research on this drug. I appreciate that the treatment for anxiety was a bi-product of research, and on other forums there are a lot of concerns about this drug.
Not being in a good place at present and trying many other possibilities without success, I was thinking of increasing my dose. I can see you tearing your hair out but at 72 years if they worked I wouldn't want to come off them. It's a gamble I know. Thanks for your time and consideration
All the best
william
elizabeth85938 william74513
Posted
Hi William
I concur absolutely with Matt's reply to you. This is not a drug to take lightly or even at all. Current studies on it being used for anxiety are not at all conducive to giving the green light. Pregabalin came after Gabapentin which was formulated for anti-convulsant use by Pfizer. Both drugs affect your brain chemistry and central nervous system within 7 days of taking. Matt is correct about the falsified trials of Pregabalin in the USA and the Doctor concerned being imprisoned for it. Pregabalin is the much stronger sister drug to Gabapentin. Neither have any proven assistance where Anxiety is concerned. It is used off label for a few things, chronic nerve pain being one. It seems some success has been had with this use and I took it for 3 years for a badly inflamed sciatic nerve problem. Yes, it worked at 200mg a day (after being upped several times to reach relief) but it also gave me mental confusion, brain fog, memory loss, loss of language, balance issues, eye issues and I could go on. Coming off it was an absolute marathon and the withdrawals were dreadful. I do not know where you have researched that gave you the opinion that positive reviews were the norm - but something must have made you reach out to this particular forum? As patients we are told that the side effects are minimal and w/d's not to worry about, plus it is non-addictive. The body becomes dependent on it very quickly and of course that means a slow and careful taper to get off it. Not all patients suffer side effects or even withdrawals but it depends very much on the person, reason for use etc. Most patients I have been in touch with who have taken it for anxiety thought it worked for a little while, until the anxiety came back double fold and the dosage was upped and upped by Doctors until the maximum of 600mg was reached. Then comes the realisation that it did not work and the painful process of trying to come off the drug. You have not been on this drug for years, as some have, and at a level that it is possible to slowly taper down from. Better do this than keep on upping the dose to discover how much harder it will be to stop taking eventually. In my opinion it does not work for anxiety and should not be given for this. Please do more research before you agree to take higher doses and are able to form a valid opinion to make an informed, well rounded choice for yourself. Obviously I do not know from your post whether you have suffered any side effects being on it and you know yourself best. If you look at previous posts you will find information helpful to tapering off called 'Water Titration' if that is what you decide to do. Or I will repost it for you if you ask.
I hope that you find the right way forward for yourself and wish you well.
Liz
william74513 elizabeth85938
Posted
Thanks Liz for your informative and quick reply to my pregabalin question. I'm from the UK and found that my Doctor's were not coming up with a drug that was suitable for my chronic anxiety that I have endured for many years. I went to an esteemed psychiatrist paying for his advise and he came up with yes you've guessed it pregab I'm 72 and would like to enjoy the time I have left. Everything you are saying are well meant and correct in every detail. What have I got to lose but my sanity what's left of it. Thanks for your constructive response Liz
all the best
william
elizabeth85938 william74513
Posted
I am a month away from 69 William and I too wanted to enjoy what I have left of life. I also live in the UK. I made the right decision for myself and I sincerely hope that you will not suffer the brain fog and memory loss that I did. Getting better now I am off it since last October though so there is a ray of hope there for those this drug does not suit. Take care of yourself and be well
kind regards
Liz
william74513 elizabeth85938
Posted
Thanks for your kind words Liz and well done for coming off that medication. If you don't mind I would like to ask you two questions. The first being that you went on pregabalin to help you, therefore, are you going to replace it with another drug or are you well? I have decided after listening to Matt and yourself and looking up reports on Dr Rubens that I will discontinue with this medication. I am on 25mg x 3 and will gradually reduce it.
Secondly, i am also taking 75mg x3 of venlafaxine which according to certain reports online, also has severe withdraw symptoms. Your comments on this would be of interest.
Your knowledge in this area might help me find the right drug with less side effects to lessen the anxiety/depression that I live with.
Hope I am not asking too much, as I appreciate not one drug fits all.
All the best to you Liz
From william
elizabeth85938 william74513
Posted
Hello again William
Thank you for your kind comments. I have not replaced Pregabalin with any other drug as I decided to try more natural ways to control the trapped nerve pain. I found something called 'R' Alpha Lipoic Acid which helps to mend inflamed nerve endings and so far I am benefiting from this. I am aware of the nerve ending letting me know it is not healed, it niggles if you know what I mean. But so far, I am free of the dreadful 24/7 pain that I had for a good 10 months before going on Pregabalin. I just wish I had the courage you now have to stop and taper off much earlier than I did because I definitely became very dependent on it and even missing one dose made me ill. Each capsule has a 12 hour life and a half life of about 6hours before it is out of your system, therefore a person goes into withdrawals within 18 hours. To minimise w/d's it is best to taper down slowly and carefully giving your brain and central nervous system time to readjust in between drops - you know your body best and will know the right time to drop again. This where water titration comes in as leaping off at 25mg (which Doctors say is ok to do) can cause lasting withdrawals. I am happy to help you with this if you wish.
Venlafaxine is a drug I was offered but after research decided to decline so I am sorry I cannot give a viewpoint from personal experience. I do however feel it is possibly a drug that can cause problems coming off and I guess the same taper advice would apply to this.
Anxiety/depression I believe can be treated and helped in various ways. Sometimes an anti-depressant is an absolute must to aid containment of certain thought processes and the general dark emotions that can envelop a person. So some trust still has to be maintained between you and your GP in this regard. I underwent severe depression on Pregabalin and became anxious about every little thing in my life. This was previously unknown to me and quite shocking. Towards the end of my taper this became all consuming, part of withdrawals I think. I did not, however, take any anti-depressants because I firmly believed this would dissipate after becoming Pregabalin free and I was right. Friends supported me and one introduced me to Mindfulness which I found to be of particular benefit. Please google it if you are unsure what it is. You may find it helpful in just dealing with the day to day insecurities and uncertainty. I also know that good healthy food and exercise help. Exercise was difficult for me as I have severe Osteoporosis, 3 forms of Arthritis and Degenerative Spine Disease. But I did what I could, walking each day, exercises to strengthen my muscles etc. Whilst on Pregab I suffered atrophy of my muscles and now I need to built myself back up. This is another know side effect that is coming to light now. I had put on 3 stones in weight also whilst on it and now since October (last capsule taken 22 October) I have lost it all.
I don't know if you live alone, as I do, but friendships and support are essential. There may be some groups that you can join if you feel the need to, one being Lyrica Survivors (Pregabalin Support) - I was a member there and the support and kindness is absolute. I now try to work on this and other forums to inform and bring to light my experience of Pregabalin in the hope that even just a few people think twice about going on it in the first place. Prevention rather than cure I guess. We are all so trusting and walk into the unknown believing that our Doctors/Psychiatrists etc have our very best interests at heart - yet they don't seem to know much about the side effects and withdrawals because the FDA and NICE have passed these drugs they must be OK. I walked into a minefield although I have to accept that some patients do not react as I did.
I hope my ramblings are of some help and interest to you William, but feel free to ask me if you need further support and usually I am around most days to reply.
Best Wishes
Liz
matts4912 william74513
Posted
Hi William,
Liz will no doubt be along shortly, but to offer my 2 cents to you in the meantime. Venlafaxine is an SNRI which inhibits reuptake of both serotonin and norepinephrine (hence the "N"), unlike SSRI meds which only regulate the serotonin. This means when you come off it, the brain has two major chemicals to re-balance. Serotonin is the "happy" checmical as you probably know, and norepinphrine is the "stress" checmical. During withdrawal, most people find a lot of anxiety and this is due to the fact that norepinephrine controls the secretion of adrenaline in our system. During its balancing act, the brain will put too much, then too little, back to too much etc until it is correct - but whilst doing this, it can be harsh. Naturally, the byproduct of having too much adrenaline is that you feel very anxious and on edge. Some people choose to "bridge" with an SSRI when coming off an SNRI, and then taper off that after and once stable.
The importance of withdrawal or taper from an SNRI is time. It must be done slowly to allow the brain to stabalise. Cymbalta is the biggest culprit. I have known people take 2 years to come off the drug. I myself was under the "guidance" of doctors who did not understand, and along with the issues of pregabalin, I am in the middle of withdrawal from Cymbalta (Duloxetine), so regarding severe anxiety, we are in the same place and I really feel for you. However, some find no problems at all - so I don't want to scare you! Everyone is different, and I am always going to be an exception because I have an intolerance to many drugs. Venlafaxine actually made my tinnitus really really bad - intolerably so. So after 10 days, I just switched back to Citalopram, but I went through 5 days straight of crippling depression until my serotonin levels readjusted back to the Citalopram. The norepinephrine takes longer to alter the brain chemistry, so 10 days wasn't a problem.
So if venlafaxine is not working for you - and you are at 225mg which is the max dose, it might be time to consider something else, either a change or something to augment. Citalopram is out due to QT/heart problems at your age, escitalopram I would also give a miss for the same reason. Cymbalta is for sure one to avoid. This does leave a few options though, of which I will let Liz weigh in on.
I did reply to your above yesterday with some helpful info, but because I put a link in it, the reply is being "vetted" so may be a while before it appears, but in short, I spoke of the work of Clare Weekes and the videos of David Daish on YouTube which I think you will really relate to.
If you would like any other information on the above, please let me know. Please also feel free to PM if you prefer.
Can you tell us what else you have tried in the past? Or has it just been the venlafaxine?
Matt
william74513 matts4912
Posted
Hi Matt, again, thankyou for all the information on these drugs, it certainly educates one on how the drugs work and how to reduce them when necessary. I did receive your previous comments about Clare Weekes and David Daish and have followed up on u-tube. Got more to listen to but found them extremely interesting.
I have tried other antidepressants in the past. For 45 years I was on Diazepam 5mg x 3 PD plus Chlomipromine 25mg x 3 PD. They served me well until 2 years ago when the Chlomipromine lost its potency, much to my disappointment. Since then it's been a merry go round trying to find a suitable drug that will stabilise me and keep focused.
Mirtazipan, prozac, I have tried with little success. I have always found that running/fast walking helped me but osteoarthritus has reduced it to swimming.
Still reducing pregabalin down to 50mg PD. Drs keep pushing me to increase the venlafaxine to 75 mg x 3 pd on 2 a day at present.
Again , thanks for your interest and useful advice Matt always good to here from a fellow sufferer with such knowledge of the subject
All the best
William
matts4912 william74513
Posted
Hi William,
Glad you found David on youtube... what a guy. I know he will be smiling down on us, knowing that his hard work is paying dividends in his wake.
45 years on valium is quite some time, and I am amazed that they didn't loose potentcy first. Tricyclic drugs are often the choice when SSRI's do not work, and is a shame that it has pooped out on you. Once you have been down that route, it can pretty much rule out the "new kids on the block" of SNRI/SSRI, as these are far less potent and were bought about for fear of what tricyclics would do in terms of long-term use and side effects.
I would love to join in with exercise myself, but my cymbalta withdrawal has me completely shattered most of the day - and the overproduction of adrenaline puts blood pressure up. I am trying to hold it together and wait for it to calm down. I refuse beta blockers or similar, as they will only confuse my damaged brain further.
225mg Venlafaxine might work for you, but as I said, after your tricylics, I wouldn't like to say. Unlike citalopram, it will be safe at higher doses. Two weeks after upping the dose and you will have your answer at least.
Unfortunately there are a lot of cases of "untreatable" depression and anxiety. Where I think some of it is where the right help is not being given, there are some cases. This is why such people are turning to newer measures such as cbd oil and kratom. I can see why they do out of curiosity and/or frustration..
Matt
william74513 elizabeth85938
Posted
Thanks for your message Liz. Again full of useful advice. Which I have also received from Matt. You feel that your struggle is understood when you hear from people who have been through the dark days and the endless suffering that goes with it.
I would be interested to hear more about "water titration" as this would increase my chances of reducing the withdraw symptoms.
Interesting to hear you mention mindfulness. I have two books and some u-tube feed that covers this subject. I find it therapeutic, just need to make a commitment to a daily programme.
I live with my partner (who doesn't really understand depression) so the support base is food and shelter, encouragement is limited, understandable since we met under different circumstances.
I have enjoyed participating in sport most of life which did help reduce my depression, that there is no doubt, unfortunately, like yourself, I to suffer with osteoarthritus, just given co-codemal to reduce pain. Miss that Avenue for self help.
Reading this back it's all about me me me. Sorry I've gone on a bit. Like the idea about the Lyreca survivers forum, will give that a go.
Thanks for all your help Liz it's greatly appreciated.
Kind regards
william
elizabeth85938 william74513
Posted
Hi William
Although I have only ever suffered Depression once in my life during my Pregabalin taper, which has now lifted since I was able to stop taking them, I have witnessed depression first hand in family members and friends. We don't always need to suffer this ourselves to be empathic. We see and hear the evidence of it with the passing of time and although complete understanding of this condition may be lacking I would hope that unconditional support would be given anyway. It always amazes me that if, say, a person suffers a kidney disease which is diagnosed and treated by surgery, it does not occur to others to question this 'unseen' condition and full support and care is given automatically.
The Lyrica Survivors (Pregabalin Support) is a group of sufferers, some new to the drug and some of many years standing who wish to find a way of tapering off slowly and safely in a kind, informative and supportive environment. Water Titration is fully explained in the group files but you can also watch the video on YouTube explaining how to do it. The last 30mg seem to be the most difficult to deal with and although it is natural to wish to be free of it as soon as possible it is wise to give as much time as necessary in between drops. Stabilisation is the key even if it takes 2 weeks or more between each drop. At this stage the brain and central nervous system are waking up enough to realise that less and less of the drug is present and the cravings/withdrawals mount in their intensity. I am sure you will find the group extremely helpful.
Yes, you do have to commit to Mindfulness regularly really to gain the benefit - I know how easy it is to say 'not today' or 'I don't feel up to it' etc. though. Diary it and do your best to stick to a time each day. I found that if it was written in my diary I had to honour it.
I hope the information on anti-depressants Matt has provided will be of help to you and I leave that side of things to him and his careful research. On that note I wish you well in your taper and hope that now you have reached out for help and are in contact with supportive people it has renewed your ability to keep on fighting.
Very best wishes
Liz
william74513 elizabeth85938
Posted
Thanks for all your help Liz, you have been very supportive and that is greatly appreciated. Yes, I need tools such as mindfulness to help me reduce my anxiety, and I will come off pregabalin. I have joined the Lyrica support group although I will need some form of medication to help in the future.
All the best for your kindness and consideration
william
william74513 matts4912
Posted
Thanks for your reply Matt and again much useful information on the drug situation. I am sorry to hear that you are struggling with your withdraw from cymbalta, but you sound a very determined person, who put yourself out to help others. Full credit for that.
Like I said to Liz, i will come off pregabalin in time, (thanks for the warning) but will need some form of help with my anxiety/depression. I was considering another old drug called imipramine, closely related to clomipramine, which failed me after a number of years. Just a thought, anyway, I will keep it short and whish you well with your own battle.
all the best
william