I was thinking about having a new category to capture drug and/or treatment (eg VRT, psychotherapy) testamonials: this would take the form of one topic per drug or specific treatment (we need to prevent duplication and watch for alternative names for same thing). Users will be able to reply to that topic with their experience and give it a rating. Users would be limited to one reply/rating each. The topic would show the average rating. First post could be a factual wiki. Would this be beneficial? Ideas?
At first it sounds like a good idea but, as with topiramate/topomax there may be some people who have experienced horrible side effects who may put off new users who could benefit from it. My GP was himself surprised by my positive attitude to trying topiramate because he had heard of the negative side effects, but I reasoned that if my VM was caused by chaotic electrical activity that would be the med to sort me out so I was happy to give it a try with an open mind. I think reading about other people’s experiences with medication could adversely affect other people’s perceptions and steer them away from something that may actually give them their life back. Just my take on the situation.
I am on a forum for another condition and they do that there. They have a topic for each drug, and people post their experiences with that drug. What happened was that the negative comments overwhelmed the positive comments for many of the drugs. (This isn’t because the drugs are that bad, but because people who tend to be on these types of forums are usually the people who have had problems finding a definitive diagnosis or effective treatment. Many of them also seem to be more prone to experiencing side effects.)
So now they have some threads that are for “positive results only.” For example, a thread might be titled “Positive Results from DrugABC.” The people posting in this thread might still have had some mild side effects, and they will describe them, but they feel that their long-term benefits outweighed whatever side effects they experienced.
I was thinking the same things. I was reading zoologist’s (Lisa’s) posts and the thing that struck me was that she tried topomax 3 times before succeeding, and is now on 225mg with awful side effects but is happy to call it a success story. MAV is nuanced. It’s hard. The choices we make are hard. (If I could feel my fingers or see straight, this would be easier. I’ve made hard choices.) Lisa succeeded because she found a resident neurologist who was honest about how hard the drug is on you. It’s a slow poison that’s better than the alternative, because we haven’t figured out a better alternative. We MAV folks need honesty, transparency and support. This is a hard, hard road, but we walk it together. We need to know our options and we need to be clear eyed about them. Can we create pages that do that?
Still haven’t forgotten about this … the functionality exists in a plug-in but I’m reluctant to implement it on here until its a bit more mature … watch this space …
I just performed an ill advised act of rebellion and dumped topomax in favor of a more nutrition based approach. I can see that being a stupid move. So, I’ll be watching this space. Thanks very much.