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09/06/2009 01:08 PM

epilepsy being a guinea pig

belinda1217
 
Posts: 1407
Senior Member
I'm an Advocate

How does everyone else feel about this?

I feel like I've been a guinea pig just about all my life.

I'm on my 22nd medication.

I had brain surgery in 1982 in montreal, Canada

I've had the VNS 3 different times.

I've been tried on so many different meds that I'm med resistant to or allergic to it just makes me mad.

Doctors tell me I'm a hard case.

I have like 5 type of seizures.Shocked Sick

Belinda

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01/16/2011 10:00 AM
belinda1217
 
Posts: 1407
Senior Member
I'm an Advocate

Terry,

I've taken Dilantin, Mysoline, valium,valproic Acid,Tegretol.

My heart pace maker is controlling me beter than any med now.

I feel like just giving in and I know ppl don't understand how I feel.

Belinda it's been 47 years.


01/16/2011 12:22 PM
2steveb
2steveb  
Posts: 6232
Group Leader
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guinypigs, so apt a discription, if it were a broken leg they would put it in plaster of paris ah, but when it comes to invisible ailments and knowing we all react differently i think thats all we are at times, 'oh well lets try this med'? its all a bit of a shot in the dark ah. thats one of my rationals about keeping a diary, it will be so helpfull in aiding Dr's with there 'shots' as we cant tell them what happened

i know ive mentioned it before but what do you all think about keeping diarys??


01/19/2012 04:00 PM
Angelface08
Angelface08  
Posts: 224
Member
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That is a good way of putting it I always like to say I feel like test tube but meds in shake them up and she what happens and do it again if the science experiment doesn't work lol

08/23/2012 09:38 PM
suebear
 
Posts: 7
Member

I've been in that same situation and what actually did work for me was the DBS for Epilepsy. There is another item that is out on the market being used in clinical called the RNS; both of these items are showing very positive signs for controlling the seizures.

Many patients have difficult cases of epilepsy and that is why there are these types of devices. The key is finding someone who has the training and can handle your case. What I highly suggest is starting to take the time and speak to those who have had something like this done.

Have you done the check on clinical studies in your area for the RNS? This surgery can actually be paid for in full. Secondly, if you go to www.coping-with-epilepsy.com/forums/ there is full detail about the surgery on there. The DBS for Epilepsy (also can be paid for in full), I am only aware of two at this time - Johns Hopkins in Baltimore, MD and University of Nebraska in Omaha, Nebraska. I believe there is another hospital in San Diego that is performing this type of surgery.

Again, what you can do is check on clinical studies to see what is available. A large factor will depend upon what your case fits into and the type of seizures you have. For example, my neurosurgeon wanted to do the RNS originally but chose not. The DBS was a wiser choice for the surgery itself because of how it was done. The implantation starts from the lower neck. Then the device is implanted into the chest. The surgery is tedious however because it is laser based, it did go very smooth.

I highly suggest asking questions to your neurologist and again, check out the website Coping with Epilepsy for both of these option then begin researching them out as you fit qualifications for both just by reading your notations above. I was willing to go through this because I refused to give up and I wanted my normal life back. I was tired of having seizures and I was tired of having them control my life. It is entirely up to you and how you feel about wanting a normal life.


08/24/2012 01:46 AM
2steveb
2steveb  
Posts: 6232
Group Leader
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nicely put suebear, and hows it working for you?

08/25/2012 10:39 AM
Step3Peace
Posts: 112
Member

THANKS!! for sharing that, Suebear. I'm getting ready for VNS. Am SO weary of what the meds do to my body and mind and like you, don't want others having control of my life and body.
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