Todays patients, guinea pigs for tomorrows?

[KARDSHARQUE]

As a person with Epilepsy I have experienced quite a bit. One of the things I've experienced is side affects from the meds. I have taken up to 4 meds at a time and have been on many different kinds. The last time I was taking 4 of them I became inraged very easily and would take the smallest thing and make it into a big issue. I lost friends and almost lost my wife. I busted my hand when hitting the wall instead of my son when yelling at him for something he did wrong. I would get confused and upset not knowing what became of me. I was such an easy going person at one time that couldn't be bothered with petty things.

All of a sudden people didn't want to come to my house or anywhere I might be. My wife had her friends telling her friends telling her she should leave me because of who I have become. I'm lucky to still have my job after going off on my boss because I didn't like him correcting me and because I felt he was talking down to me. Again those were petty things I could have paid no mind to but instead I let it get to me. After arguing with my wife one day we took a walk and tried to patch things up. After talking for a few minutes I told her that a big part of my erritability problem was the fact that I HAD NO IDEA WHAT WAS CAUSING IT.

Things continued overtime including arguing with my neurologist. After several weeks of pain in my calf causing me to sit and push myself up stairs I went to the hospital to have it checked.I found out I had Deep Vien Thrumbosus. After reading about the side affects and telling my doctor that I believe that the meds caused the DVT the doctor disagreed and had me continue. I then spoke with my pharmacist about my findings on the side affects. The pharmacist showed me the papers that come with the meds and pointed out where it said known side affects. One of the was DVT. I then stopped that paticular med on my own. I was still on four meds now because I took Coumadin for the DVT. Eventually the Coumadin was stopped and I was on three meds.

After several weeks I started to notice a difference in how often I got upset and how I was able to control my anger just a bit more. I then read more about the meds and discovered they contributed to anger confusion memory loss and of course DVT just to name some. I started to keep notes and compare things I went through with the meds I took. I would tell myself it's the meds causing me to feel the way I did and I would walk away from arguing. As time went by I got better control of my anger issues. I knew that others wouldn't believe me if I told them it was the meds so instead of arguing I put up with a lot from others.

I let my wife deal with the kids and walked on egg shells at work and at home. After so many months went by and others saw a difference especially my wife I was able to stand up and say how I felt with out worrying what they would say. I was able to focus better and laugh more. I was able to better at work and have a better relationship with my wife children and others. Example;as I was writing this article you're reading I corrected my daughter by asking her to pick up something she left on the floor for over 2 hours. I said it nicely and walked away after she said ok dadknowing she did something wrong. Last year I would have gotten very upset and gone overboard yelling at her about it. And her mother would come aid as I wlked away upset. I often get frustrated when thinking of what the meds have caused and why the dr's let it continue. I have so much more to my story I feel as though todays patients are guinea pigs for tommows.

 

[RobinN]

Welcome Kardsharque - I agree with you 100%
This is why my daughter is med free and we are finding alternatives to help her.

 

[skillefer]

Welcome Khard! Hope you enjoy CWE.

 

[LivingFruity]

Welcome Kard :hello: I totally agree with your guinea pig statement. This is why I chose not to allow the doctors to medicate my son. We control his seizures through nutrition and therapy. The alternative choices available to us are amazing. Now that you refuse to be a guinea pig, your world has really opened up to you. You can be in charge of your physical, mental, and emotional health once again

 

[brain]

Hello Kard,

I spaced your posting out for easier reading, and I
can understand your frustrations. But I am wondering
have you ever had an EEG? Or has the Neurologist
ever diagnosed you with any seizure or seizures? Or
specifically - I am wondering if there are medication
reactions as there are some out there where they can
"clash" which causes problems.

In addition I also ask, are all your Doctors who are
treating you are in tune with each other? Are you letting
them know of all the medications you are on? Do they
have rapport with each other? Is the Cardiologist involved
as well? If no one is in tune with each other, then you
need to get a hold of your Primary Care Doctor and try
to get everything sorted out so that everyone is on the
same table so that there would not be any lopsidedness.

But as for Coumadin? Why in the world were you put on
this and then taken off of it? You would have had to go
for periodic blood level checks. I'm sorry if I am asking a
lot of questions, because a lot of things doesn't sit right
with me. I have both - Neurological and Cardiology
problems on my end here, that's why all the questions;
therefore personally - I think it is a high time to dial up
on the phone and make an appointment with your Primary
Care Doctor and going over the bases as "Who's on First,
and What's on Second ...." after all your Primary is the
"General Overseer" of your health and he/she will review
and evaluate everything upfront.

 

[Bernard]

Hi Kardsharque, welcome to the forum. :hello:

... I feel as though todays patients are guinea pigs for tommows.

Well, it's true to an extent. They only test drugs so much for efficacy and safety before the FDA approves them for the market. That's why the FDA created the Medwatch system.

 

[drarvindr]

Agree with brain , kardshark ,
Can't believe you just quit warfarin therapy without any blood checks. given your history of DVT , besides your being on a drug like coumadin which messes with your blood clotting mechanisms , you really need to get yourself checked up. If you are unhappy with the drugs , then change your physicians. As for the guinea pig thing , you may be right , but it works both ways. My dad was one of the first indian patients to be put on rituximab for his lymphoma. it worked a miracle and he is now in remission (knock on wood). On the other hand , there are some for whom it doesn;t always work out. People moan about stricter restriction by the FDA but don't expect non allopathic medication to be held to the same standards. you can prescribe homeopathic or "herbal" medication on the street and no one regulates that. terminal cancer patients smoke pot to relieve their pain , no one regulates that. so i guess the shoe must fit all concerned parties

 

[KARDSHARQUE]

As far as me being taken off of the coumadin goes I was followed on a regular basis and eventually the clotts came back. After that my regular physician recomended me to a vascular surgeon. Because I could fall and hurt myself if having a siezure the dr's decided instead of putting me back on the Coumadin they would install a TrapEase which is a filter used to collect any blood clots that accumulated. As far as the dr's getting on the same page goes any time I saw a new dr. my records followed so they all new what meds I was on and the results. Now when I take 13 pills a day and go through what problems I had and tell my dr.s only to be placed on more meds and because of being taken off of one med and notice such a big difference for the better then that tells me was overdosed. My current neuro said I was on too much and wants to install a VNS and hopes that I can cut down on the meds and live a normal life. Again after what I went through and the dr. didn't think it was the meds but instead wanted me to see a therepist and be placed on another med too control anger that's very disturbing and makes me fell like a guinea pig.

 

[RobinN]

I know I would feel that way too.