should I ditch meds ?

[vapour]

Afternoon all.

I had a really good 3 weeks here.. perhaps a little longer.. have not paid such attention.....and last night I had some seizures.

I vaugly remember last year when my seizures were not as bad... being off lamictal for a while whilst everything was being figured out as to whether or not I had epilepsy....and I do recall having seizures, but also a period of time off the seizure med without any.

Im wondering... if Im one of those people with temporal lobe epilepsy who does not respond to medication.... since it seems to be the same way on it... fine for a short while.. then seizures.

So.... as you can see, if this is the case it would be better I was off the medication given the side effects... etc.

I am going to email my doctor I think ? Not sure lol becuase I left a very long email last night after some simple partials and a complex partial, and I didnt realize I ramble so much until I re-read my email to her this morning LOL, so I dont want to be a pest really.

PLUS if I do come off meds, it will mean I dont have to go to the UCLA hospital in order to get them free anymore...I think I may have developed PTSD after what has happened this year becuase Ive been extremly angry with the hospital and very tearful and emotional when I think about what happened......so it might be in my best interest to get them out of my life, its extremly stressful trying to get the emds covered by the county.

Lets put it this way.. it might be a better trade off (especially if im not responsive anyway) to perhaps have seizures.. but no stress (my biggest trigger) due to having to get those meds by county.. like trying to get blood out of a stone.

Hope this makes sense.

 

[Nakamova]

Definitely something to discuss with your doctor. And if you do decide to taper off of them, go VERY slowly -- even slower than the doctor recommends, so that you don't run the risk of having more seizures.

It's worth having a plan in place if you're going to try and be med-free. Make sure you're getting the right nutrition and sleep, and find ways to relieve stress.

 

[Crystal11]

Have you been diagnosed with Epilepsy or just a seizure disorder they don't know much about? Did you get sick or have an accident that might of caused them?
I went most of my life without meds- my Mom was afraid they would cause harm to me. I had a very scary beginning to my life- born three months early, was on O2 and lots and lots of meds and had many surgeries etc. So she thought since my CPs were short back then, than i didnt need strong meds... anyways- I am sort of glad for that in a way, and sort of upset at her not knowing more about Epilepsy back then. Anyways- I have taken meds now for the last 3 years and also when I was a teenager for a year or so.
I definity would let your neuro know that the meds you're on now aren't working and you're considering stopping them. Don't stop them on your own. I did that and had a really bad CP and I had to go to E.R.
Consider if having seizures is better than taking the meds and dealing with side-effects. Think about how a seizure would cause harm or danger is specific situations etc..

Please, be careful and safe
Crystal

 

[vapour]

Yes I was diagnosed on the 7th July with left temporal lobe epilepsy. I had febrile seizures as a child, and I also had a head injury when I was a teenager from ski-ing. Neither one have been discussed, whats important to me is seizure control, not so much what caused them...who knows whether I would have developed this anyway.

I emailed my Neurologist today, waiting for a reply.

 

[vapour]

my reponse was a little short. I too have simple partial and complex partial. I have not had a tonic clonic, and I pray I wont have one. I have been at the ER 3 times this year. First of all in March, and then twice in July....from partial seizures that would not stop... and I have felt extremly traumatized by this. Yes I dont want to end up there again....infact I wont end up there again... becuase Id rather give myself as much klonopin I need to stop them.. than go to the ER and have IVS put all over my and given IV ativan..

Sorry, just dont care anymore. Its a great place to be actually, becuase nothing upsets you. When you wake up expecting nothing... expecting twitching and nasea... expecting meds to not work.....then you dont get hurt. I am just going to live my life the way I want now. Im not afraid anymore

 

[vapour]

Anyway, I hope you all do well, but Im gonna be away from the forum for a while. For me.. everytime I put a pill in my mouth it reminds me I have an issue and that makes me depressed, same thing with the forum, I need a break for a while.. this is an awesome place, I will come back, but right now I want to forget about epilepsy...I dont want to reinforce it every single day of my life.
I am going to 6 flags in a couple of weeks and I dont care... I am going to have a good time....people can say what they want... maybe that Im harming myself .. who knows.. but infact I am doing the opposite, Im going to live my life again, I want people to let me be....and Im not going to think about epilepsy anymore...and that my friends... its a healthy attitude.

 

[RobinN]

We will be here if you want or need to return.
Have a great time at 6 Flags. I also hope you enjoy a sunrise or two.
Be well.

 

[Nakamova]

I definitely understand the impulse to be med-free, and not have epilepsy on the brain The times I've tried to go off medication (under doctor's supervision) the resulting seizures have made the epilepsy impossible to ignore (for me and others), and the injuries/ER trips became cost-prohibitive. I fervently wish that it works out for you Vapour, and that you stay healthy and happy.

 

[Rach_nc1984]

Personally, I think that you should talk to your neuro about it. He/she will be reluctant to take you off. Do you keep a journal? If you do, compare the amount of seizures before the meds you are on now vs. the amount you were having without meds. I just recently stared keeping a journal and it is actually quite helpful...I quickly realized that I was having more seizures than I thought I was. You may be having less, but dont really realize it. If you dont keep a journal then start. Don't try to decrease meds on your own. If you miss a dose, then write that down and write down if you have a seizure due to it. That right there is a great way to see for yourself how meds are/aren't helping you. You may need to be switched to something else. I have been on almost every seizure med with the exception of phenobarbital, trileptal and the brand new ones. Largely because of allergies, but also some just plain didnt work for me. I dont blame you for wanting to get off meds if you feel like they arent helping you. Sometimes I feel that way even though I know that they do help, because it is very frustrating when I have a bad day. But if I wasnt taking meds, then I wouldnt be able to work and do half of what I do now. Be careful and really analyze how you were doing before meds and after. As hard as it is, try to put your emotions aside when thinking about it because they can get in the way. Hope all goes well.