Todays patients guinea pigs for tomorrows

[Tony Murray]

 I went through side affects of meds and dr.s refused I was rite with findings Drs witnessed side effects and said it was something else. I went by my findings of side effects and proved them wrong. they admitt 2 screwing up then deny it. They treat us like we know nothing and they're always right. I've come to believe todays patients guinea pigs for tomorros. That's why I'm not on here often. Even the owners of this sight only want your info for thier benafit and not yours. Remember we're guinea pigs for not all but so many of them

[Tuckermom]

See my posting---it reflects yours.aaaand It has gone totally ignored. It appears that if we keep taking our pills like good little robots, that's a good thing and we should question nothing.  "Here! Try Lryica! You won't gain weight!" tell that to my scale. "Vimpat is a great drug..no side effects at ALL!" Yup, tell that to my toidey.

I'm cancelling my appt. with him next week. More of the same, more of the same. Not wasting a 1 1/2 drive to hear the same drivel.

Best wishes to all of us guinea pigs! (they can be awfully cute, though.)

[Tony Murray]

 Glad to see I'm not the only one witnessing these issues and standing up for themselves. Never let someone let you think your not smart enough to feel as though your findings are correct. And especially don't let them take away your confidense to stand up for yourself.

[Lrjg]

hmmmmmm, this sounds like why I was fired from my job I worked so hard with after my TL surgery.  I could feel my confidence raising while working at a simple job.  I needed it bad after my surgery that took away so much of my memory and cognitive skills.  I know the owner knew of what I struggle with.  I believe they let the managers know and that is the reason they treated me like I couldn't handle things during the job.  I know I was and could!  It just became  an emotional struggle trying to prove it more and more.  I am positive I was not making mistakes but being blamed for mistakes of other workers.  I think it was a way for others to try and look better.  I did lose when I lost allllllll my confidence and lost the fight.  It is the worst feeling in my life and wish I didn't have to struggle with it.  I knew it was too much when I was dealing with it worse than dealing with the death of my special husband when I was young.  This problem was really just caused by the doctor, but done with them.  Now I am only struggling with a different doctor!  I got my leg cast off of my leg a week ago.  The doctor thinks it is all better!  It's not!  It feels exactly how it did before a cast was put on it and I still can't put weight on it just like before.  I tried to tell him it is painful still and it is just ignored.  Maybe the doctor is right but sure would like to see some improvement with it before my daughters wedding in a few weeks!  It was fractured almost 2 months ago. 

[TravisEd]

I'll agree with feeling like a lab rat at times.  I'm on med #11 (that I remember).  Tucker, I really understand some of the items you brought up.  Those have been the recent additions to my regiment.  Still trying to adjust to Lacosamide after almost 3 weeks.

 

I've had to yell at my doctors before when they wanted to try dumb things.  In my head it sounded like once the doctor wanted to throw a match in gasoline.  He wanted to mix drugs AGAIN that is warned you should NOT use at the same time.  That second time I let myself yell at him with the 2 interns in the room.  I didn't care what he thought.  I was NOT going to feel doped up all day long a second time.

 

Some doctors just don't like the patient being educated.  I've had only a few that thought it was GOOD I kept up on the medications and researched before I started on new meds.  I found it funny an older doc laughed at it when I cut him off when he started telling me the side effects of the new drug and continued to read the FDA paper on it from memory.  He told me OK you know enough, I can stop telling you.  Just call me if there are any problems.  He is the type of Doc I wish a LOT of us could have.

 

--Travis

[Tuckermom]

Anthony, that has happened to me, as well. I know brevity, for goodness sakes! I was/am a Copywriter...for 22 yrs. before "E" entered my life and these meds. screwed me up completely. So I lost my career. I have so many bruises from walking into walls due to dizziness, broken mt nose and have had no less than 20 stitches and lost 38 lbs. that I needed due to the various (12) meds. I have been gagging on in the five yrs. since my diagnosis.

Yes, yet another guinea pig who is being stifled by many and are afraid to speak up. Not just to their epi. doc, but others. We're not supposed to refute anything that is told to us. What do we know? Heck, I only have a degree in English, so what do I know, for Pete's sake!

I will be my own advocate, as we all should. Life could be better.

Regards to all,

Sheila

 

[Tony Murray]

 The meds will do a job. Keep notes and you'll feel more in control. Good luck Tuckermom

[princesscakes]

I laid up in bed almost a month on disability stupid drugs are like a nero toxin an doctor said he never seen any body with such extreme side effects. I doubt that :( they are listed as side effects an Im just starting to walk now. Now I'm wondering how I'm gonna explain this on my tiny form to disability . still on the drug just reduced ..... mix of side effects lingering an pain from lack of movement of been immobile for a month . still possibility of a an 4th  drug change ahead ... lookin like a test rat  agreed

[Southie]

L@@king backwards; I often felt like a lab rat with the way Neuros had treated me years ago; why in the world am I laughing when it's not funny ... but it makes me wonder now, if they were attempting to make a Neurological finding in order to come up with an article and get their names published? Be richly rewarded and lauded ... MEN and their EGO-Mania!

 

:-/

 

Don't even go to what I've gone through, for we have such a long thread here ....

 

HOW MANY MEDS HAVE YOU BEEN ON?

 

You'll just be surprised at this old thread here - spill the beans and don't feel bad ... some of "us" are literally "Toxic Waste Dumps" (Sorry Sheila, I love how you've quoted it and you've quoted it perfectly; stole your line again :-P)

[Pauline Polzin]

For years that is what I had thought I was.  I am fonally controlled.  But I felt like a guinear pig.  Being use as trial.  Never just getting it right.

[Tony Murray]

Today is another day in which I think of what that __________ that calls herself a dr. put me through and I get frustrated by it. They watch what the patient goes through. Then they say the patient needs more meds for that issue,instead of saying the patient is showing side effects from medacine they were placed on. When this patient (me) brought to that ____'s attention my findings, she denied to agree and instead wanted to put me on med for Bipolar. That no good - - - - - - - -. !!!!!!!!

[Hubert]

My neuro never really made me feel like a lab rat, but the guinea pig did cross my mind and was understood so before my seizures were finally brought under control.  I knew all that going in, though, even as a child.

Side effects, regardless of the med or its intent, will always be until the right balance is obtained.  And often, as in my case, they subside when the body/head finally gets used to its implementation and change.  The longest stretch of awful side effects for me for one drug was 2 1/2 years.  After that, they lightened up substantially, probably because they were so rough early on.  I don't know.  As the drug was further developed it suddenly was smooth sailing.   Other earlier meds on me simply came & went, not every day, not every week, some effects not every month.  I'd credit other issues for helping some effects to hit:  certain foods, drinks, sleep, exercise, heat, cold, and certainly other drugs.  That 2 1/2 years one's worst effect was a 3-way tie: my head would feel like it was expanding and hurt from it, my head would do just the opposite and feel like it shrank to the size of a fist, and plain old equilibrium problems kept me from doing things I wanted to do when it felt like I couldn't control my head from rolling around.  

Other meds were simply too much or not enough.  Usually not strong enough or simply did not stop the seizures.  I also credit plain ol' growing up, aging for easing some side effects up until they no longer were dominant.  Sometimes weather brought on the migraines, sometimes they just happened.  Even those have left my sphere for past few years.

My neurologist and family doctor at home had me convinced they knew what they were talking about.  I believed in what they said because they'd explain it outright to me, regardless of my age or how bad it might sound.  Tons of EEGs, a couple of MRIs, and constant blood tests for certain drugs kept them on the right path.  The only doctors I stood up to or against were out-of=town, away from home, strangers in ER rooms that tried to interfere or magnify my other doctors' system or patterns with my & my meds.  They were few & far between, but DO exist!   And I strongly believe in research, so I vote Democratic also.

[Tony Murray]

Today I looked up that womans(person that considers herself a dr.) name. I read other patients feed back reguarding her. Three out of five patients had nothing good to say. Make that four out of six. One person said that dr. told him/her that the person didn't have seizures and that they just wanted the meds. That same patient then saw another dr. that recorded the seizures. Pretty sad that the few bad dr.s make those dr.s that are in it for the patients look bad. I've had a couple of them good dr.s, so I know they exist.