migraine product reviewed by users

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migraine product reviewed by users

Post  Lil Bird on Fri Mar 26, 2010 1:43 pm

Do you guys know of a site that allows migaineurs like us to review treatments we've tried and rate them?

I was checking out acne.org and thought, "why don't they have this site for migraine treatments?" A place where we can give honest reviews of products and treatments that either worked or not. A site not controlled by Dr's, pharma, or anyone but people like us, for us. I know what works for one person may not work for another. Abortives would need to be treated seperatly from preventitives. Also, it seems to matter what kind of migraine you suffer from as to what product works for you. I believe that some migraines are neural, some are vascular, some are muscular and some are a combination thereof. It is just an idea. What do you guys think? If there is already a site like this please tell me!
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Re: migraine product reviewed by users

Post  HeelerLady on Fri Mar 26, 2010 2:04 pm

I don't think there's one out there. I have 2 separate thoughts on this. 1 is medications - there are sites out there that do list the common "preventatives" and abortives. But having a yea/nay panel is not going to be helpful - we all respond differently to medications and the combo of medications is different between folks. I could tell my story of Topamax (not good) but I know there are others on the board that is a life-saver for them. Same thing with triptans - work wonderfully for me, not so well for others.

2 is devices/items/procedures - there are some comfort items out there that might be worth collecting. However, the cause of the M is not very well understood. I have no idea what's causing mine (sure would make med trials easier if that was known).

While it's not a bad idea, I think we need to better understand what causes them before you can really have a rating site.
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Re: migraine product reviewed by users

Post  LG on Fri Mar 26, 2010 2:07 pm

HeelerLady wrote:I don't think there's one out there. I have 2 separate thoughts on this. 1 is medications - there are sites out there that do list the common "preventatives" and abortives. But having a yea/nay panel is not going to be helpful - we all respond differently to medications and the combo of medications is different between folks. I could tell my story of Topamax (not good) but I know there are others on the board that is a life-saver for them. Same thing with triptans - work wonderfully for me, not so well for others.

2 is devices/items/procedures - there are some comfort items out there that might be worth collecting. However, the cause of the M is not very well understood. I have no idea what's causing mine (sure would make med trials easier if that was known).

While it's not a bad idea, I think we need to better understand what causes them before you can really have a rating site.

I agree. I think we all react so differently to the meds. It is hard to tell which one will work for which person and what person will have bad side effects and another won't. If we narrowed down what is causing the migraines for different people we might be able to have a chance at which medication would be most effective for the type of migraine each person has.
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Re: migraine product reviewed by users

Post  pen on Fri Mar 26, 2010 2:11 pm

Teri Roberts gives a lot of feedback on complimentary and books I think.
Not sure about medication.
But I am sure she can speak for herself.

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Post  Lil Bird on Fri Mar 26, 2010 2:39 pm

I agree that it would not be perfect. However, acne is much like migraines in that no two people respond the same. Even with that being the case the acne.org site is wonderful and terribly useful to me. I look at the product ratings and if a product has a high rating then I know it has worked for a lot of people. Then I read what they wrote about the product and what type of acne they suffer from. It helps me research tremendously and I know that side effects I'm having others have had also.

I just noticed that Dr's quite frankly are just as lost as we are! They don't know what they are doing. They just go down a list of scripts and hope something will work. A site like this would give us more control at looking at treatment options and what is working and what is not. I think it is worth a try. I mean look at us, its so damn frustrating, isn't it? LOL. Can you tell I'm frustrated? Think about it guys. I wish I knew more about computers because I would so set up a site like that.
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Re: migraine product reviewed by users

Post  TeriRobert on Sat Mar 27, 2010 10:19 pm

We don't have a formal place for medication reviews on MyMigraineConnection.com, but it's not unusual for people to register for the site and write a SharePost (somewhat like a blog entry) to share their experiences with medications.

I do write book and product reviews, but I've never felt quite right about "reviewing" medications. As someone else said, we can all react so differently to medications.

Certainly, the posts where people share their experiences with medications tend to be well received and start some good conversations.

Teri

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Re: migraine product reviewed by users

Post  Cindy*W on Mon Mar 29, 2010 12:44 am

I just happened to be looking up a drug that the doctor wants my daughter to try and I looked at Drugs.com and found that you can look up drugs in several different ways.

You can look up by condition, by class and several other ways that I don't remember.

Also, it allows people to rate the different drugs they have tried and write about what they thought about the drug and what side effects they experienced.

I found it really helpful. Most of the people who did rate the drugs wrote several paragraphs and really explained themselves.

Check it out and see what you think.

Cindy
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Re: migraine product reviewed by users

Post  Paradox on Mon Mar 29, 2010 12:51 pm

www.webmd.com also has a very extensive drug review area. The reviews are posted by the disease, drug, effectiveness, etc. It is posted by patients.
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