Personally I think these can do more harm than good. If someone is worried about a side effect of their prescribed medication then they should contact their doctor or pharmacist in the first instance. The patient information leaflets list all the possible side effects. Plus, let's be honest, there are already a million different places to find this sort of information on the Internet.
As for whether or not they help? Well, that will be different for everyone and the only way to know if it will work for you is to take it for the month or so that it takes.
Having said that thought, I don't a ban or such would work.
Last edited by The One Who : 08-03-2013 at 10:42 PM.
I think the main problem with the positive or negative aspects of medication is, that we don't know the percentage of people who are experiencing possible side effects.
I don't know if it is like that in other countries, but in Germany they always write in the medication leaflets how many of 10 000 patients get a certain side effect. That way it is relatively easy to figure out how likely it is to get certain side effects.
If I have a side effect I always read through the medication leaflets first to figure out if it is a side effect of a specific medication, and then I think about what I'll do next.
You survived the abuse.
You're gonna survive the recovery.
Telling scare stories isn't helping people to make an informed decision. Besides which, they should be talking with their prescriber about side effects specific to them (and consulting medication leaflets), not random people on the interwebz.
Telling scare stories alone isn't productive, but I don't believe telling happy 'yay my meds worked' sotries on their own is productive either.
One of the medications I was on sent me bat-shiit crazy - I did not leave my bedroom for over a month, i didn't eat or drink, and all this because i thought everythign was being poisoned and that people were following me and spying on me. I couldn't leave my bed without having a panic attack. Even in my more lucid moments I thought this was because my crzies were getting worse, and I didn't think it was to do with my meds because 'listed side effects are rare' and all I'd ever heard about my meds from other people was happy feel good stories.
^ One of my medications made me incredibly suicidal. I persisted for two weeks, went back to my GP, told him, he told me that it was impossible for SSRI's to do this, and it was just my mood anyway. I persisted for another two weeks (talking to Belle (Shine.) and the Christian SIers who kept me going) before I ended up nearly jumping off a bridge, and came off them AMA. My mood bounced back in 24 hours, and in three days I was fine. I had, repeatedly sought medical help during this month; I had just been unfortunate that they hadn't understood.
If it hadn't been for talking about the side effects here, there's a good likelihood that I may well have not been able to keep going.
That said, I've since taken another medication which is wonderful. Side effects are rare; it's important to note that, but banning talking about them is borderline negligent.
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No-one gets remembered for the things they didn't do.
We won't all be here this time next year,
so while you can take a picture of us.
We're definitely going to hell,
but we'll have all the best stories to tell.
Agh! Apologies for making a thread on sertraline. I did delete it as soon as I searched myself!
I have noticed that most people mainly comment on negative experiences though. Before I started on any medication the amount of negative experiences I read about kind of scared me! Personally I try not to comment on a treatment unless I have something positive to say about it. I don't want to scare people off!
I don't think that it needs to be banned at all, but I'd like to encourage people not to give scare stories about medications. If you had an absolutely terrible experience with it, it should be fine to let them know the side effects you experienced or whatever, but try not to be overly graphic and "THIS IS TERRIBLE GET OFF IT NOW!".
Last edited by Eccentrics : 09-03-2013 at 07:37 PM.
I was on a med that many people find good for them for a year. It was hell for me. I had literally more or less all of the side effects of it. Including insomnia, nausea and loss of appetite for a whole year!
I have been on a med 8 years that many people have problems with due to side effects - I have had barely any side effects on it.
I too found a thread on RYL helpful. At the end of the day- to what extent is everyone responsible for their own choices? If you have a disclaimer sticky, basically saying- medications experience side effects withdrawal etc. should all be done with discussion with health professional.
At the same time, some people feel very strongly NO MEDICATION. That probably annoys me a bit- but if the question has been asked on a non medical forum- the feedback is going to be a mixed bag. No one should be issuing medical advice. That probably needs to be made clear. But the level of catastrophising vs. valid anecdotes/ personal experiences usually means that if people are looking for support for their choice- i.e. finding someone who went through or is going through what they are going through- they will.
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it’s not working for polar bears.” Arianna Huffington 2014
I don't think I have asked about specific medications myself but have searched the forums when I have been prescribed a new med just to check what the average consensus is as well as looking at the PIL and the NHS website etc.
I have replied to some threads and try to give a balance view of the meds I've been on trying to focus on things I picked up whilst on them that made side effects easier think particular about sleep and eating whilst on antipsychotics!
I think when replies are around how to cope with the meds and little things to watch out for they can be useful.
i have nothing to add to this other than i wish people would use the search function instead of their being twelvty threads all asking the same thing.
If you type a medication name into search, chances are, threads come up.
handy handy.
Definitely agree with this. Also some medication threads are in the mental health forum but shouldn't they go in to the first aid forum - just wondering because they are to do with first aid.
Love From Meera xx
“The only way that we can live is if we grow. The only way we can grow is if we change. The only way we can change is if we learn. The only way we can learn is if we are exposed. And the only way that we are exposed is if we throw ourselves into the open.”
People get scared and need reassurance and to discuss what is going on for them, including medication. I think it is rarely purely about information, hence making new threads when it isn't 'necessary'.
They just don't bother me and I tend to agree with the above, sometimes its more a case of 'Ohh I'm on a new med, anyone else been prescribed this; what did you have it prescribed for?'
I mean, the 'what side effects does x cause' give me a mild headache but only because that person should read the leaflet in the box. That said, I don't see that many of these anyway.
People get scared and need reassurance and to discuss what is going on for them, including medication. I think it is rarely purely about information, hence making new threads when it isn't 'necessary'.
Don't like it, don't read them.
Support threads for medication are slightly different to the old side effects threads though. If someone is wanting support because they are going on medication, or are struggling with the side effects, then that is very different to simply asking what the side effects are, or what experiences people have had with them, or anything like that.
That said I think my reaction to prozac was pretty special and unique so I wouldn't talk about it as it would be scaremongering.
This is the kind of thing I'm talking about- not everyone has the common sense to work out when scare stories are unnecessary/ inappropriate.
Quote:
Originally Posted by The One Who
Personally I think these can do more harm than good. If someone is worried about a side effect of their prescribed medication then they should contact their doctor or pharmacist in the first instance. The patient information leaflets list all the possible side effects. Plus, let's be honest, there are already a million different places to find this sort of information on the Internet.
As for whether or not they help? Well, that will be different for everyone and the only way to know if it will work for you is to take it for the month or so that it takes.
Having said that thought, I don't a ban or such would work.
This. And I do agree with the last bit too actually! I certainly wouldn't suggest a ban, but maybe some sort of regulation/guidance.
Quote:
Originally Posted by Laura2.0
I don't know if it is like that in other countries, but in Germany they always write in the medication leaflets how many of 10 000 patients get a certain side effect. That way it is relatively easy to figure out how likely it is to get certain side effects.
It is listed on English ones too- for some reason people just find their own statistical research to be more reassuring :-/
Quote:
Originally Posted by talaiporia
If it hadn't been for talking about the side effects here, there's a good likelihood that I may well have not been able to keep going.
That said, I've since taken another medication which is wonderful. Side effects are rare; it's important to note that, but banning talking about them is borderline negligent.
Sertraline is a lifesaver in some circumstances though. When you go around telling people OH MY GOD DON'T TAKE SERTRALINE IT MADE ME SOOOOO SUICIDAL, that's gonna put people off isn't it? Can you imagine the facepalming of a doctor who prescribes someone sertraline under careful supervision, and they refuse to take it because someone they met on the internet told them it would make them really suicidal? Obviously you can make a thread in serious about feeling suicidal and get support for it, but I don't see the necessity for any post about your difficulties to have the sertraline-is-evil tagline.
And I don't think it's negligent. Scare-mongering about rare side effects when you have absolutely no medical qualification is, in my opinion, 'negligent'. Although I wouldn't use the word 'negligent', as it makes us sound like doctors and we're not.
Quote:
Originally Posted by Eccentrics
I don't think that it needs to be banned at all, but I'd like to encourage people not to give scare stories about medications. If you had an absolutely terrible experience with it, it should be fine to let them know the side effects you experienced or whatever, but try not to be overly graphic and "THIS IS TERRIBLE GET OFF IT NOW!".
I think that's a good point Holly! And don't worry about your thread, I completely understand the motivation for making them, especially young whippersnappers like you, it's more the responses that get on my wick!
Quote:
Originally Posted by The One Who
Support threads for medication are slightly different to the old side effects threads though. If someone is wanting support because they are going on medication, or are struggling with the side effects, then that is very different to simply asking what the side effects are, or what experiences people have had with them, or anything like that.
Oh golly, I find myself agreeing with Claire again!
Do we really need to wrap people in more cotton wool?
If medication threads get banned, everyone will start taking wikipedia as gospel and never go on any med because wiki says they will die.
People need some common sense, I find that reading other people's expieriences makes me feel less scared alot of the time, thus more likely to actually try something that could really really help me.
People need to not be idiots.
The world is just illusion always trying to change me.
You will find wonder wherever you can, and spread joy whenever you are able.
I felt emotions of gentleness and pleasure, that had long appeared dead, divide within me. - Frankenstein.
Do we really need to wrap people in more cotton wool?
If medication threads get banned, everyone will start taking wikipedia as gospel and never go on any med because wiki says they will die.
People need some common sense, I find that reading other people's expieriences makes me feel less scared alot of the time, thus more likely to actually try something that could really really help me.
People need to not be idiots.
You've completely contradicted yourself here. People on RYL should be taken as gospel but not any other website out there? The only way for people not to be idiots is to listen to their medical professional, and if they want to, get a second opinion on medication.
Getting support for medication issues I'm totally fine with, but just asking for experiences or side effect or anything else can be found elsewhere on web, on the patient information leaflets, and ultimately they have to take the medication before they know what effects they may get, if any.
I haven't seen that many threads asking 'what are the side effects of x?' Usually it's more that people need support or reassurance with a particular side effect.
I don't actually see the issue with asking for people's experiences. Yeah you can find it elsewhere but so what. Most of the questions that are asked on this site don't 'need' to be asked. You could find similar questions/issues on other sites. But people want to be able to actually discuss things, and I do think that often threads like that are sort of an indirect way of asking for support.
Sure, people going 'omg it was awful and nearly killed me!!1' isn't helpful but most replies I have seen are more nuanced than that and there are always other people to offer another viewpoint.
Obviously people find them helpful or they wouldn't go on making them. If you find them that annoying they're easy to ignore.
Obviously I didn't mean take anyones word as gospel. Maybe that was the wrong expression to use, but if people don't find out here then they are far more likely to go to wiki therefor, instead of getting people who say that something has done wonders for them, they are going to get wiki telling them that they will die.
That probably makes no sense but I basically mean that if people dont get told the good and bad things about something and only the bad, then they are less likely to try it. Even if it could be the best thing for them to do.
Yeah, I'm crap at English.
The world is just illusion always trying to change me.
You will find wonder wherever you can, and spread joy whenever you are able.
I felt emotions of gentleness and pleasure, that had long appeared dead, divide within me. - Frankenstein.
I think people talking about how meds affected them is a good thing. Yes you will have people who dramatize or take user experiences too seriously, but most I've seen are very honest and describe it as their own experience, not as though its the case for everyone who takes it. It also is possible to talk about bad effects and let others look out for dangerous effects without saying no one should take them ever.
For example, the vast majority of meds make me worse. However, I know that is not everyone's experience, so I will not say they are likely to make you worse. However, doctors in my experience do not at all act as though this is a possibility. Doctors I've had actively downplay the black box warnings, which is dangerous (I nearly hurt myself because they didn't take it seriously). Seeing as this is a known side effect and professionals often downplay it, it can help for a user to hear from someone else that "hey this can actually happen, it's not common but if it does, remember its simply the meds and get help immediately". As opposed to my experience where everyone kept telling me it was just me and I kept taking the meds and nearly hurt myself.
This is also true for side effects that may be listed but not emphasized. There are two antipsychotics that I tell anyone who takes them that they made me and other people I know who have taken them VERY drowsy. Like dangerously drowsy to where it feels you've been drugged by someone. I was not made aware of this (I've had very poor care tbh but that's a different story). And while its listed as a side effect, them hearing my description of almost falling asleep driving or stupidly mixing it with a small amount of alcohol and subsequently hitting my head from passing out in a not safe place, getting stuck at a friends house I did not feel comfortable at, etc might impress on someone the importance of understanding how seriously drowsy these meds might make them, and how careful they need to be when first getting used to it. A black and white print of side effects from the pharmacy won't do that.
So while I don't think anyone should say "never take x drug", I do think its important for personal experiences to be shared. As long as they are qualified as personal experiences only, I think they can really help people watch out for side effects that doctors may neglect to explain and to sift through the tons of side effects listed on the inserts. I just know how much I wish I'd have known to watch out for, and who better to explain that than people who have taken them?
Stereotypes are the epitome of human laziness.
- me
