hesitant to go on meds - advice?

[Cint]

Sorry I couldn't read through this whole thread...that's one of my downfalls since I developed E, but we are at the mercy of doctors, IMO. I did what ever they said and took what ever they told me to. Those dam grand mals sucked! When I was put on my first med, (Dilantin), the seizures stopped. I'm now on Pheno. So I guess we should do what they say...who else are we to ask?

"This is just my opinion Super8"

We re NOT at the mercy of the doctors!! We DO still have our own MINDS and are able to SPEAK UP!! We can ask ourselves and get a 2nd, 3rd or 4th opinion if needed. I took some of the meds a dr. suggested and ended up with more problems!!!!! I took Dilantin, too. It didn't stop seizures. I took Phenobarbital and had a serious reaction, I took Felbatol and went literally crazy....I took another med and ended up with Type 1 Diabetes because of it!!!!
I'm for meds, but I still say get another opinion if things don't work out. SPEAK UP, too!!!!

 

[masterjen]

Super8: in reference to your question about where I live, I am in the Vancouver area of B.C. Where are you?

 

[JJR1956]

We re NOT at the mercy of the doctors!! We DO still have our own MINDS and are able to SPEAK UP!! We can ask ourselves and get a 2nd, 3rd or 4th opinion if needed. I took some of the meds a dr. suggested and ended up with more problems!!!!! I took Dilantin, too. It didn't stop seizures. I took Phenobarbital and had a serious reaction, I took Felbatol and went literally crazy....I took another med and ended up with Type 1 Diabetes because of it!!!!
I'm for meds, but I still say get another opinion if things don't work out. SPEAK UP, too!!!!

Cint, so where do YOU get your 2nd, 3rd or 4th opinion from? DOCTORS! But speak up, of course.

 

[Cint]

Cint, so where do YOU get your 2nd, 3rd or 4th opinion from? DOCTORS! But speak up, of course.

I got mine from neurologists and then went to an epileptologist (a dr. specializing in seizures) at a University Hospital. Also, check out your local Epilepsy Foundation.

 

[JJR1956]

I got mine from neurologists and then went to an epileptologist (a dr. specializing in seizures) at a University Hospital. Also, check out your local Epilepsy Foundation.

So why are you disagreeing with me? onder:

Yes, we all make our own decision's, but we need our doctors.

 

[Hobbes]

I'm not a person who shops for docs but I drop ones who are not compatible very fast and know red flags to avoid. Better docs know how to listen to what patients say and can separate the wheat from the chaff. And better docs know when to pass you on to another expert.

 

[JJR1956]

I'm not a person who shops for docs but I drop ones who are not compatible very fast and know red flags to avoid. Better docs know how to listen to what patients say and can separate the wheat from the chaff. And better docs know when to pass you on to another expert.

I totally agree with you Hobbes. :clap:

I had a doc once who I dumped. I called him, "Doctor Doorknob". As soon as he got in the room to talk to me, his hand was on the doorknob, so he could leave. That's NOT the kind of doctor any of us want.

 

[super8]

Super8: in reference to your question about where I live, I am in the Vancouver area of B.C. Where are you?

I'm in the tricities. Have you only been seeing neurologists around here or are there other specialists you can recommend?

We re NOT at the mercy of the doctors!! We DO still have our own MINDS and are able to SPEAK UP!! We can ask ourselves and get a 2nd, 3rd or 4th opinion if needed. I took some of the meds a dr. suggested and ended up with more problems!!!!! I took Dilantin, too. It didn't stop seizures. I took Phenobarbital and had a serious reaction, I took Felbatol and went literally crazy....I took another med and ended up with Type 1 Diabetes because of it!!!!
I'm for meds, but I still say get another opinion if things don't work out. SPEAK UP, too!!!!

I definitely plan on speaking up when I see my neurologist at the end of the month. I still haven't started the pills, going to wait till I see him again and ask a lot more questions

 

[valeriedl]

I had my first seizure 13 years ago, when I was 27, out of nowhere. I kept seizing over and over and had to be put into a coma for my brain to 'calm down' and stop seizing. I pretty much had to start taking meds.

I tried several different meds over the first few years. Some worked, some didn't, some caused more seizures and others I couldn't deal with the side effects of. Even now my neuro does some things with my meds, usually lowering the dosage witch is GOOD!

As others said have you ever read the side effects of over the counter meds? My husband and I read some once and were actually laughing. One of my favorite is when I was watching a commercial for Viagra, which is a prescription med. It was listing the side effects and one of them was 'can cause erectile dysfunction' - the thing its suppose to fix!

Just because it says you are going to get one of the side effects doesn't mean you are going to and if it does you can always change the med.

My husbands dad has epilepsy, not sure when in his life he was diagnosed. He started taking meds at the beginning but after awhile, not sure how long, he decided to stop and hasn't had any seizures. Like everyone said it's your choice to take meds or not.

 

[opusde1988]

Super8, I felt the same as you on all points above. I had my first realized seizure on 3/23/2015, my wife was driving us home from a casino overnight where I did not sleep very well. Woke up puking and exhausted. Fast forward to losing my license for 6 months, trying a bunch of different medications to avoid the side effects.

I just had another one on 4/30/2016, still in a fog from Saturday. I am 45 yrs young. Have made major changes in my life regarding drinking, smoking and diet and its still occurring. Have brain mri scheduled in June. This stuff is scary.

 

[super8]

It's definitely a scary thing and I'll admit it sits in the back of my mind a lot but this whole scenario frustrates me more than anything. How my neurologist prescribed me these pills without doing any testing. Then with the EEG results in, he still wants me on them but hasn't been in town for 9 weeks (and counting) so I've lost all trust in him
Also saw my family doctor, asked if there are any other tests or meds I can go on and the answer to both was no
Then we asked if we can see another neurologist, the answer was no
And then I go to a brain fair, talk to a neurologist from New York, and he gave me a list of 5 diff types of meds I can go on and told me not to go on Divalproex because it's way too strong in my case (he read my EEG)
I just feel like I'm getting dicked around by everyone

 

[masterjen]

I'm in the tricities. Have you only been seeing neurologists around here or are there other specialists you can recommend?

Oh wow!! I'm in this area as well! Anyway, my long-winded story: For 2 1/2 years I was seeing a general neurologist and getting nowhere fast. After 2 1/2 years of dealing with epilepsy I had an upcoming appointment to see a specialist in an unrelated field for the first time, and when she heard how I was being treated by the neurologist she was shocked. Being a specialist she was able to refer me herself to the VGH Epilepsy Clinic. I have been exceedingly impressed with the entire clinic over the subsequent years I have been going there. I realize my experience with the general neurologist may not be typical, but if you feel you are not getting anywhere with treatment from your general neuro. then somehow get a referral to VGH.

 

[Hobbes]

Yeah, there has got to be a way to get a proper second opinion so no other options just doesn't pass the smell test. Sometimes docs don't click with patients. Poor bedside manner is really an inadequate phrase. So even if the original doc had a good approach, they can mess up listening and explaining. Hope you can find a better option.

 

[seagull]

End of day it free world with or without advice people will do as they feel with own bodies.Right or wrong they find out for themselves as they say give people the tools see what evolves

 

[super8]

Oh wow!! I'm in this area as well! Anyway, my long-winded story: For 2 1/2 years I was seeing a general neurologist and getting nowhere fast. After 2 1/2 years of dealing with epilepsy I had an upcoming appointment to see a specialist in an unrelated field for the first time, and when she heard how I was being treated by the neurologist she was shocked. Being a specialist she was able to refer me herself to the VGH Epilepsy Clinic. I have been exceedingly impressed with the entire clinic over the subsequent years I have been going there. I realize my experience with the general neurologist may not be typical, but if you feel you are not getting anywhere with treatment from your general neuro. then somehow get a referral to VGH.

Hey! We could be neighbours for all I know!
I'll definitely ask for a referral to VGH. I'm not denying the fact that I may potentially have epilepsy and may be at risk for another seizure, but it's incredibly annoying how my neuro has been on vacation for so long and I haven't had anyone to talk to about my EEG results and anything else that bothers me

I had another neurologists office call me the other week and I explained them my situation, how I'm unhappy with my current neuro and don't trust him, but since they're not allowed to "waste resources" and have two neuros, they had to pass it by my family doctor regarding me getting a second opinion. Of course that got denied
I'm ready to change family doctor and neuros any second now

Yeah, there has got to be a way to get a proper second opinion so no other options just doesn't pass the smell test. Sometimes docs don't click with patients. Poor bedside manner is really an inadequate phrase. So even if the original doc had a good approach, they can mess up listening and explaining. Hope you can find a better option.

Yeah I hope so as well. I just have to wait and wait

End of day it free world with or without advice people will do as they feel with own bodies.Right or wrong they find out for themselves as they say give people the tools see what evolves

Yeah I agree. I appreciate everyone who has posted ITT with their opinions, personal experiences and all that, and the general consensus seems to be to take the pills, but I'm still deciding to not go on them
I even hate taking Advil / tylonel or any of that for minor headaches. I'm just against pills entirely
Must be the whole millennial attitude :?

 

[Hobbes]

Naw... My spouse (think absolute earliest gen X) is against pills for almost everything, himself and our kids. His family is usually quite active into late 80s, slows down in 90s. He's ok with vaccines and treating infections so is not against everything. The major exception is AEDs for our youngest. They have made such a difference, even with the frustration of accepting E because diagnosis is not so cut and dried (mentally) even when they recorded seizures on eeg. Only too bad to work with drug so far has been keppra. For us it isn't the seizures themselves that are the worst, it is the weirdness/anxiety that would make our child unable to play or enjoy things that she very much wanted to do. Don't think she realized the crappy cognitive issues that were around for a while. Things have changed over time although I don't know what happens with cognition if meds are stopped, would get seizure activity every hour or more frequently and would mess up learning big time. Going without treatment would be awful. And at first we had a lot of fights over medication. But that's no longer an issue although accepting epilepsy still rears it's head from time to time.

 

[Belinda5000]

Everyone on meds doesn't end up with cognitive issues;I didn't and I have the best neuro who use to be a professor.

 

[Hobbes]

Medication increase fixed those cognitive issues.. seizures can cause cognitive issues. We haven't had cognitive issues with meds so far, but I really did want to try other drugs instead when topamax was suggested. Our neurologists are all professors doing research, no guarantee of good bedside manner but I've liked most of them after a while.

 

[Zara-Newman]

I read your first post, but I haven't read any of the follow ups, so I am very sorry if I repeat anything.

When I was in my teenage years I used to pass out a lot, I was given an EEG and it was slightly abnormal, they didn't give me any medication because they said that a lot of people have abnormal EEGS and have nothing wrong with them and they thought I was just fainting because of hormones.

Fast forward to when I was about 15/16 I got attacked and got a bump on the head along with being strangled, oxygen deprivation.
Then the faints became seizures, repeated EEG was worse and I was put on medications.


Basically what I am saying is that a lot of people in the world have abnormal EEGS without having any problems, it doesn't mean that you have anything wrong with you.

Also more people than you would think have seizures in their lifetime, usually just one offs, or a period over a month or year.
It can be caused by overexertion, alcohol, drugs and a big one I've heard is altitude.

You could ask if you could stay off the tablets and see if you are okay without them, or if it is mainly the side effects you are worried about maybe look into some other options like hemp oil or herb/spices.

Sent from my SM-G920F using Tapatalk

 

[Hobbes]

While I have seen the lifetime stats about 1 in 10 having a seizure but only 1 in 26 having epilepsy, I have not seen stats saying lots of people have abnormal EEGs and don't have epilepsy. The papers I read when first learning about this said that only a small percentage of people with epilepsy related discharges do not have epilepsy in the general population (so discharges are highly correlated to having epilepsy). The percentage will be bit higher in hospitalized populations and amongst those with diagnosed neurological issues. So if you have something that supports a lot of people having abnormal EEGs without issues, I would actually be interested to read that. Not just things like the breach rhythm with skull defects, that's not really without cause.