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    Weening off seizure meds
    avatar
    pandabear12212 posted:
    Don't worry guys. I'm in no way considering it at the moment. Just curious. So, my neurologist wants me to be 6 months seizure free before I start driving (if all goes well I can start driving September 31st!). Im on 500mg a day. 200 when I wake up, 100 at noon, and 200 at 3pm. I am very relieved I've finally made it this far. I just know how much it friggin sucks to take these godawful bitter pills 3 times a day. Its totally embarrassing pulling out a pill case in the middle of class I know sometimes they say that epilepsy sort of disappears on its own and doctors will sometimes gradually ween patients off of medication after 2 years of being seizure free or something like that. Do you guys think maybe someday they'll ween me off of my meds to see how it goes? I think I'm going to go insane if I have to take 3 of these bitter pills a year for the rest of my life or some ridiculousamount of time...I already have to take 3 other pills every day for the rest of my life GUARANTEED (Thyroid pills because of the whole Hashimoto's thing). Arrrghhh taking 6 pills a day for the rest of my life will seriously drive me mad. Has anyone else had experience with weening off medication? Successfully or at least an attempt? If any of you have read my posts in the past, then you know I only have partial seizures. Idk if this effects it at all...

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    avatar
    pandabear12212 responded:
    by the way the 15 years is meant to be 15(plus) years. The symbol wont show up
     
    avatar
    dancer86442 responded:
    Hi Panda,

    I've been on my Pheno's, since I was 27. I Was weaned off them once, @ age 42. But, I was weaned onto Felbatol, successfully. Recall of Felbatol & been on Pheno's since. Yes, they are bitter. I've learned to aim all 3 toward back of tongue w/ good gulp of water. Why do I stay on my meds? Cuz, I know what happens when I miss 1 or 2 days. The only way I would consider going off meds is w/ CBD Oil.

    Your Dr can/will do some tests & take note of any seizure symptoms, over that 2 yr span, b4 saying yes or no to weaning. Time & Patience. Hurry Up & Wait. The Dr/test/med merrygoround ain't over yet.

    As for 6 pills a day. Count yourself fortunate. I have seen others' on much more. Please, don't be embarrassed. You are doing what is rite for you. Keep in mind,,,Taking them meds on time is putting you one day closer to driving privilege. Positive Attitude. Chin Up! Hugs! I Hope you make the 6 mth goal. I Pray you will make the 1 yr goal & On & On & beyond.

    Love Candi
    International Awareness Day: Second Monday of Feb. March 26: Purple Day, November: Epilepsy Awareness Month. Wear Purple to show Support. Advocate
     
    avatar
    ShakeNBake47 replied to pandabear12212's response:
    Hi Panda -

    Stay positive. I know it feels like forever to get your DL back. Driving was in my top 10 in favorite things to do, it wasn't just transportation for me. My state is also 6 months, but I waited just under a year to actually get back to driving out of concern for relapse.

    This is my first time posting so I am an adult on-set diagnosed in 2008. My first was a CP, the 2nd a grand mal, and after medication back to CP and SP before things settled down and it's now under control. Like you, I also have thyroid issues, but Grave's which in turn pushed my blood pressure to high, even with the Grave's in check. I'm on 6 different meds with only on 10.5 pills a day but at one time I had 17 pills a day. But my epilepsy meds also caused a folate, calcium and iron deficiency so now I'm anemic and have to tack on another 10 pills a day in vitamins bringing it to a total of 20.

    I know it can be embarrassing and a pain in the butt to take the cases with you, but take care of you, who cares what people think.

    A note on driving, I was conservative in my estimate and waited longer than the law simply because my first 2 happened while I was driving with a passenger. The first I was at a park in the parking lot and drove down a boat ramp into the water. Bystanders were able to pull me out, I have no memory of my truck going into the water or anything that happened after that. The neurologist ran the standard battery of tests, cat scans, mri, eeg's, nothing. One off episode, nothing to be concerned about. I don't recall how long afterwards, no more than a month later, the 2nd, I had a grand mal on the freeway moving at 65 mph. The passenger couldn't find the emergency brake and steered us onto an exit ramp and it was either cause a major collision or put us into a utility box. He chose the utility box. The entire front end of the SUV was trashed and seeing it afterwards, it amazed me that the engine block didn't come into the compartment. A sign post went through the windshield and within inches of his face. We almost died that day.

    I'm not trying to be dire or negative, I just wanted to share my personal experience. Please just try keep in mind that you will be traveling in a 3000 lb weapon, I know I didn't think of it that way before my seizures, and a CP can be deadly. I've been seizure free for 3 years now but every time I turn over the ignition I say a prayer that I come home safely.


    Dancer is right, hang in there. It felt like I would never get back there. I lost more than one thing that I loved and won't get back. Every single day I'm thankful that I got this one thing back.
     
    avatar
    dancer86442 replied to ShakeNBake47's response:
    Merry Christmas Shake. Thank you for sharing your Journey. I hope Panda is still doing Good! HUGS!

    Love Candi
    International Awareness Day: Second Monday of Feb. March 26: Purple Day, November: Epilepsy Awareness Month. Wear Purple to show Support. Advocate


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