go off meds???

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aboizd1

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Hello-

I have recently been pondering the pro's and cons of medication. Although great support for starting a new med from you guys...I just couldn't do it! As somebody with no seizures, and fine on the low dose of 125mg-to go to a new med and go to 200mg- how does that make sense? I'm not sure it does... Thats my question...

Has anyone gone off meds...and had a good experience? ---I am allowed to drive in 2 weeks and i'd really like to....

Has anyone gone to a really low dose of meds? Just to keep things "semi controlled"?

I don't want new meds really, but I either need off it, or lowered, or new-because it affects my breathing. It's to a point where I'm out of breathe drinking a glass of milk- so i gotta decide quick!
 
Remember

All medications start being effective at different doses so you shouldn't let the dosage scare you. You don't know what the average amount needed of this new med is so it might not be as bad as you're expecting it. Everyone reacts differently to all medications so you have to remember that 125mg of one drug might effect you more than 500mg of another. After all, it is a totally different chemical and you really won't know until you try.

That said If your seizures are not bothering you I would recommend you lower the dose of the medication that you're on & see if the negative side-effects go away (or at least lessen to the point of not effecting your life like they do now). At the same time, be very aware if you feel your seizures might come back & either up the dosage again or start a new med if you do.

Good luck & keep us updated what and how you're doing.
 
I agree with Eric that it's apples and oranges from one med to another in terms of dosages, since the active ingredients differ. If you are responsive to your current med at a low dose, that's a good sign that you'll probably be on the low end of any medication you try, but it's not a guarantee.

I would say if you're going to go off meds, go as slowwwwly as possible, and by that I mean tapering down over the course of months rather than weeks. I think that's especially important if you're already at a fairly low dose. And pay close attention to how you are feeling. If you feel the tiniest hint of a seizure breakthrough then you'd want to stay put, and/or consider eventually trying another med. Keep in mind the risk of losing your driving privileges all over again.
 
I hope this is something you are working with your doctor on...I would never go off meds without talking to doctor and having a plan with him/her.
 
I haven't told her my thoughts of going off the medication, but I would NEVER go off even a bit of it without speaking to her-the medication scares me! I may call her tomorrow.

As for lowering the dose, I understand to go slow...but I don't know what to look for in seizures..? I know my warning right before hand- but otherwise I don't have them-so I don't know

I'm not convinced that I couldn't be ok off meds and just be well behaved....and maybe pick up the celiac diet and some rest
 
If you switch to the celiac diet, it's best to do it BEFORE tapering off meds -- it can sometimes take a few months for the diet to heal the body.
 
time to get started i guess! then i can do whichever IF the time comes...
 
I just went off my meds. I am starting over with a new doctor due to some issues with my current neuro. (Serious issues) I wouldn't advise it. I'm okay, but I WILL NOT drive while off meds, nor make important decisions. I hope to get a EEG baseline, and start from scratch with the new neuro. I know, not a good idea- same thing I'm telling the OP, but it's a well thought out decision. I am taking 5HTTP, in the interim for the head shocks. It helps a lot.
 
Hi Rhea, glad to hear your okay :) if you don't mind me asking, how was the process of going off the meds...was that okay? Or was that iffy?
 
so far it's not too awful bad. There are a LOT of head shocks, especially when I'm tired. Which is most of the day. i'm pretty irritable- well, maybe more than a little. I know there is mild seizure activity, but nothing I haven't handled before. Should be good for a good baseline, just don't know how long before meds are clear of system- have to look on that one.
 
I know it takes 3 days for me without meds or at a lower level before I convulse. I know this from when I was young & stopped my meds cold turkey (not very smart but hey, I was young) & another time when my GP insisted we cut the dose in half since he thought it was a little high, which we did gradually. Both times it took 3 days for me to have a T/C.
 
Sounds like it's moving in the right direction for you-

I didn't know what a headshock was, and looked it up- particularly interested because before I went to bed last night, I was sitting at my computer (tired) and all of a sudden it felt like a spark whizzed through my body and popped in my head. I was slightly frantic because this was new...I put everything away and went to bed- but woke up 2h later feeling awful and stayed awake all night and was only better after i vomited at 6 am and then i was able to go to sleep and continue on with life...
-----is this headshock?
 
There's an aura that feels like the shock you describe, a misfiring of neurons, is this case, ones related to that particular sensation.
 
I'm sorry..I know nothing...from reading things, I understand an aura to be what people feel before a seizure- which I understand to have before I do have a grand mal--

would this mean that it's "possible" for me to have had some sort of small seizure? or were can this type of head shock thing also be in the category of aura?

just curious :) thanks guys!
 
I was told when my daughter began having seizures that it was a complex partial (small seizure?) that would then generalize into a tonic clonic. Now that my daughter is med free she only seems to have tonic clonic seizures. However due to nutritional changes, they are getting less frequent. I believe there is a healing process and over time some can reduce seizures this way.
My opinion though.
 
I hope so, I'd like to think that i can be off of the medication one day soon- thanks for the info
 
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