Heya to all

[Miss M]

New Day

after waking this moring i am feeling back to my old self. Took me ages to go to sleep last night after sleeping so much yesterday but at least i dont feel like i have been poisened?

Who do you use to manage your meds? Your neuro or your GP?

I have so far had 2 apps with my neuro and had to ring him twice, but i am sure he is not going to appreciate me ringing him everytime i have a problem, so i am wondering if i should use my GP. OK next time i talk to the neuro i will ask him what i should do if i need help again. Dont want to loose the neuro he is great and he doesn't charge me, he just medicares it THANK GOD.

Thanks to everyone who took the time to respond to my post. For the first time i dont feel alone in all of this.

Miss M.

 

[Miss M]

Epilepsy and kids

I went to visit my disabled daughter today. She is 18. We only just put her into full time care and visit her every weekend.

She used to seizure a lot, she would have 'cluster' seizures, where one would come straight after the other which left no time for her brain to cool down. She has been on many meds over the years but has finally outgrown her seizures and is med free.

When i went to her house today there are 6 clients there all with severe disabilities, none can speak and have no communication skills.

All the clients are epileptic. They are on several different med combinations for severe seizures.

What i sat back thinking today as i watched the kids was after my horid weekend on topamax is how these kids must feel when they are having side effects and cant say or do anything about it - they are trapped and the meds continue. Most drool or lay curled up moaning, even crying out, almost in pain.

I have seen them fall down in a seizure breaking their teeth or nose, getting seriously hurt, all the while they are taking all these damn meds and are still seizureing so they keep piling up the meds. I really do have to question what they are going through now after experiencing my own effects. I really wish there was some way we could help the helpless disabled to have a voice when it comes to seizure meds.

My daughter was on topamax and i remember he being zonked out but had no idea how or why she was. I feel absolutey shocked at how she must have felt over the years with all the meds she has been on. As her mum i feel ashamed even though i didnt know any different at the time.

I guess i just want to say as hard as it can get - at least we have a voice.

Miss M.

 

[Nakamova]

Hi Miss M. --

In some care facilities here (especially those for the elderly), the patients don't receive a comprehensive medical assessment, and are overmedicated. While on one drug that knocks them out, they are diagnosed with dementia, and then they are given another drug for that. The drugs make them woozy, they fall and injure themselves, so they receive yet another medication for that. I hope the kids at your daughter's facility are under proper care. Either way, I agree that without a voice or patient advocate they are at risk for even greater suffering.

 

[Meetz1064]

Miss M,

you asked about who should be in charge of your meds...

Honestly, that depends on YOU. That said, here's the way I do things, if it helps you at all.

I have a GP, Dr. T. He's not a neuro by any means, but knows a good deal about my meds--but does NOT pretend to know everything about them. So what we agreed upon was that whenever I went to a different doctor, I would not only let his office know about the appointment and meds that may have resulted from the appointment, but I also have the doctor that I visit send a letter, letting him know the detailed specifics.

The reasoning behind all this is that I have a very, um, complex case to manage. BUT it does prevent conflicts between the meds, and my pharmacy is also very actively involved. It also keeps the lines of communication WIDE open, and each doctor involved in my case is well aware of what's going on with other doctors....

But then again, that's just me........