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What are the unmet medical and social needs of people with epilepsy?

Wed, 12/19/2007 - 08:50

Calling all users!

Recently the board members of Epilepsy Therapy Project shared their perspectives on the unmet medical needs for people with epilepsy. These experts and many others help scientists see where new research and development is needed.  

I'd like to hear from community users about what you think are the unmet needs - both the medical and social needs. Add your views here and we'll write this up to share with everyone!

Thanks for your help! 

Epi_help 

Comments

Re: What are the unmet med social needs of people w epilepsy?

Submitted by phunn on Thu, 2008-07-24 - 22:41

Swiggs...  Bravo and ditto...  Everything you just said.  I was diagnosed when I was 14.  I am now 54.  I have worked in the health care field for 27 years.  I drive, live alone, own my own condo.  I would like to add something regarding medication side-effects.

Medications:  Catch 22...  I am on med cocktail now that has given me back my independence.  I was over-medicated for 20 years and in 2004 ended up in the hospital.  I have memory loss.  2004-2005 blank, gone, nada.  I almost lost my eyesight because of one of the meds.  I have a compromised immune system.  (If I get the flu I could end up in the hospital again.)  It was seriously considered that there had been so much brain damage (from the meds) that I would never work or live alone again.  By sheer grit and determination and a lot of help from family, friends, co-workers I managed to keep my job and excel.  (I've been promoted.  That means more to me than I can express.)

I don't recall any of my physicians telling me about the possible seriousness of side-effects.  They were glossed over or added to a conversation as an 'oh by the way' comment.   How can you make a decision with that kind of information? Physicians need to understand that side-effects are not just a chemical reaction.  And people are not walking-talking petri dishes.  And if you are over-medicated at the time of the discussion how about an advocate?  Med side-effects change lives...  for the better and for the worse.  I have experienced both.  I don't have an answer for the 'unmet need' of medication side-effects, but it must be addressed.  PS:  The physician that has me on this med cocktail is wonderful, caring, attentive.  The other was not.  Thanks for speaking Swiggs 

Swiggs...  Bravo and ditto...  Everything you just said.  I was diagnosed when I was 14.  I am now 54.  I have worked in the health care field for 27 years.  I drive, live alone, own my own condo.  I would like to add something regarding medication side-effects.

Medications:  Catch 22...  I am on med cocktail now that has given me back my independence.  I was over-medicated for 20 years and in 2004 ended up in the hospital.  I have memory loss.  2004-2005 blank, gone, nada.  I almost lost my eyesight because of one of the meds.  I have a compromised immune system.  (If I get the flu I could end up in the hospital again.)  It was seriously considered that there had been so much brain damage (from the meds) that I would never work or live alone again.  By sheer grit and determination and a lot of help from family, friends, co-workers I managed to keep my job and excel.  (I've been promoted.  That means more to me than I can express.)

I don't recall any of my physicians telling me about the possible seriousness of side-effects.  They were glossed over or added to a conversation as an 'oh by the way' comment.   How can you make a decision with that kind of information? Physicians need to understand that side-effects are not just a chemical reaction.  And people are not walking-talking petri dishes.  And if you are over-medicated at the time of the discussion how about an advocate?  Med side-effects change lives...  for the better and for the worse.  I have experienced both.  I don't have an answer for the 'unmet need' of medication side-effects, but it must be addressed.  PS:  The physician that has me on this med cocktail is wonderful, caring, attentive.  The other was not.  Thanks for speaking Swiggs 

Re: What are the unmet medical and social needs of people with e

Submitted by 2imagine on Thu, 2008-04-24 - 09:53
I agree with everyone with our unmet and social needs! I miss integrating with others outside of the family. Just taking a nice walk due to fatigue from the meds or having an attcak outside without people thinking I am psycotic. Sleeping too much while others enjoy a nice day. The simple things people do/enjoy I have to work twice has hard.

cananbis research

Submitted by xgi on Thu, 2008-04-24 - 10:07

I would like to see more research with marijuana for epilepsy. Maybe try marinol for the sezs? As of now per doctors  say it's not approved for epilepsy  Thanks...........x

 

                                    

I would like to see more research with marijuana for epilepsy. Maybe try marinol for the sezs? As of now per doctors  say it's not approved for epilepsy  Thanks...........x

 

                                    

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