Please Can I Have Some HELP. And Give Me Some Advice. | MyEpilepsyTeam

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Please Can I Have Some HELP. And Give Me Some Advice.
A MyEpilepsyTeam Member asked a question 💭

I have seen 3 consultant's over the past 30 years who explained I had epilepsy put me on the right medication great and worked no problem. But the new constitution said I didn't have epilepsy and cut all my medication down rapidly and I ended up in another hospital with no uses of my one side fitting and put on oxygen and very high blood pressure and other things and scared out my head as well as my family all because she wanted to take all tablets off me I did not have any form of epilepsy so… read more

posted March 6, 2023
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A MyEpilepsyTeam Member

If the old doctors are available for confirmation seek them. If your old files are still available retrieve them in full detail.
Stay in the monitoring unit
Seek a second opinion.
As your own gaurdian you have your rights and as a
patient you also have rights to proper treatment read them and use them
//remember that Doctors have people in authority over them to
Sometimes the people above are suprised at what is going on below.
Don't let this doctor take years of your life by being full of himself

posted March 11, 2023
A MyEpilepsyTeam Member

There is only 4 neurologists in my state so I don’t have many to choose from but when I don’t like a doctor who is not helping me that’s when you help yourself and find another doctor I had to in a different field sometimes you have too doctors don’t know you you do!!! So please find someone who will work and most importantly listen to you.

posted March 6, 2023
A MyEpilepsyTeam Member

Hello I have been dealing with a seizure disorder since 2012 after my back surgery. I too have been to many different doctors ones that say I'm facing it or it's all in my head or I do have epilepsy or no I am having non epilepstic seizures. My seizures continue to get worse and change. Just this month alone I one day I had 25 and in another 11. Last year I almost lost my life. I too have had doctors tell me I don't need medicine because I don't have epilepsy and then as soon as they take me off the them I start to have seizures. This last time my wife was told by the hospital Neurologist that if I came back to the hospital they would not admit me they would just stabilize me and then send me home because there is nothing they can do even if I am still having seizures. So my primary is going to send me to Mayo Clinic or Shands. You see I am struggling I no longer feel I have my own life. I can't drive, I can't go anywhere by myself without my wife feeling or thinking I'm going to have a seizure. My advise to you is to get as many options as you can and surround yourself with as many advocates to fight for you, you are going to need them .

posted March 7, 2023
A MyEpilepsyTeam Member

do your own research.
1) (and most inportantly) if you have epilepsy, you have it for life. it is like alcoholic anonymous. i don't care what new dr said no.
2) if dr ween off any med it may develop a side effect. when i ween off phenobarb, i got a little bit increase in seizures and i just got a bump in a log tire and didn't go anywhere.
3) you can always get another option. i have thousands of drs i hired and fired and retired. i had kid seizures and in total i lost count at 150 drs... and that was just a teen. sence then i had hundreds more.
listen, drs can be wrong a few times. trust your gut, research everything you can on your epilepsy, and trust a trusted dr(s) (yes i have a couple of drs).

posted March 6, 2023
A MyEpilepsyTeam Member

Did they do any investigations and if so what was the outcomes

posted March 6, 2023

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