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Having Trouble Staying Faithful To Taking My Medicine
DonandDee4523 posted:
I was officially diagnosed with epilepsy in 2003 after a seizure that sent me to the er while my children at the time 5 and 7 were home alone with me. I have encountered struggles with making appointments, following up on treatments, and seeing my dr and have gone on and off the medicine sometimes hoping its not that bad and it will just go away. Has anyone else dealt with these feelings or struggle once diagnosed staying on the program for medicine and visits?
saxofone1 responded:
Hi DonandDee,

Who is taking the meds, Don or Dee?

That's not important right now. What is important is that you're not taking your meds. If the docs gave you meds to help reduce or control seizures, stopping the meds isn't going to make them go away. Secondly, stopping your meds w/o medical supervision can be dangerous. The body will react to the absence of them such as heavy withdrawal symptoms or status epilepticus(unending succession of seizures).

Are you having trouble remembering to take them? I suggest a pill box or setting your watch as a reminder.

Have you been experiencing these feelings for a long time or are these new emotions? Is your doctor aware of them? He needs to know. Have you changed meds recenctly? Old or new meds, it is possible that these feelings could be a side-effect of them.

Don or Dee, this issue needs to be addressed with your doc. Do keep us posted on how you're feeling. I hope these feelings pass soon.

I have never had any such feelings. I was diagnosed in '75.

dancer86442 responded:
Hi DonandDee,

Welcome to Epland & Thank You for sharing your struggle & concerns. After my diagnosis I went off my meds after a Mth. I thought I was 'cured'. I lived in Denial for the next yr. Seizures continued, but, I was unaware of signs/symptoms. Those who witnessed my actions didn't Tell me. After waking up on the bathroom floor, my face & hands all bloody from a gash over my eye, I Woke Up! Will something like this or Worse wake You Up? I think You've been in Denial &/or Uneducated, for too Long! After my incident I stayed on the Dr/Med merrygoround till I found my Control med after 10 yrs. Some/most find theirs w/in a yr or 2. I didn't start asking questions, wanting to know more until 5 yrs later. I've been seizure free though for over 20 yrs.

To find a medication/treatment that Will work for you takes Time & Patience! What Angie Said is sooo true! It's Not going away! Seizures don't discriminate about when or where they will occur. You can go days, weeks, even a yr or more w/out activity while Off meds. But, IF you are on a med/treatment that Works you can go the rest of your life w/ fewer to No seizure activities.

So, Question?? Were you on any med long enough (Over 4-6 weeks) to determine if it was Helping? Were Side Effects of any of them Bad??? What Type of seizures do you have or What Occurs? How often? Have you considered 'alternative treatment'? ie: Diet, neurofeedback, Chiropractic,Yoga, Meditation, etc? I Wish DRS would Inform Patients they Have Other Options!

Read our info about Journals. Posted under Tips.

Love Candi
DonandDee4523 replied to dancer86442's response:
Thanks for sharing your story Candi, I am Don when I was first diagnosed I was going through a bad divorce and my wife at the time along with everyone else including the first doctor I felt were non-supportive of helping me deal with it and it was presented to me in a very threatening way like I was being scolded rather than supported to help me discover the situation and how to accept and deal. My ex-wife I feel has always thrown it in my face in a very negative light so it was hard to accept and adjust. I was given lamictol for treatment and seems to work when i follow the program, my original cat scan/eeg found a cyst on the front temporal lobe that under unknown triggers it causes the brain to cease. The seizures i have are usually partial ones with stomach ache, dizziness, feeling like i have to throw up, but usually no memory of the spell . Since I was diagnosed i have had about 7 major grandmahl seizures and they have usually been triggered I feel when I am under high stress, too much caffeine, and not enough rest. I am remarried now and have a supportive wife, but I guess I am selfish or have wishful thinking. I was back on the program with the original neurologist, she was having me do follow up every 3 months based on drawing blood for checking differential, then they canceled an appointment and wanted to change a visit last minute, i never followed up, but was taking my meds on the refills i had, then i got a letter she was leaving the practice, so i finished the refills i had and once i ran out I didn't tell anyone but i felt good and that knowing my triggers if i just kept stress down that I felt i could kick it, so 1 week went by all good, 1 month all good, so i just kept going and sure enough stress hit, wasnt sleeping good, drinking red bulls, and about 3 months later I had a major the dr left the practice and prior to leaving dismissed me from the practice so I am going to see a new Dr. at Rush next Friday and i wish i would have done different, its emotional a major seizure because i realize all the people i have let down workers, family, kids, wife, etc
dancer86442 replied to DonandDee4523's response:
Hello Don,

Well, I ain't scolding you. I think you have had enough of that. From others' & yourself.

Your Triggers are common enough. Lack of Proper Sleep ads Stress to your system. So, if already Stressed, it's a Double Whammy. Energy Drinks are a Big no-no. I believe WebMD just posted an article on FB about that.

Forget what ya did Wrong in the Past! Move Forward & continue to Educate yourself. We have Lots of good resources posted. And will be glad to answer any questions. Good Luck w/ your New DR. Let us know if you would like Info about what questions to Ask!

Love Candi
hula_dancer73 responded:
hi Iam Nancy also know as hula around here.

That is becuase I live on O'ahu.

Anyway you need to get an alarm to help remind yu that you have to take it.

No matter how good or bad the meds are they will eventually help you,

Never go between taking them adn not taking the,

Could casue more szs and status where one sz occurs after another or the first one never stops.

when I was taken off the neurontin it took about 2 months to get me off it completely. Under his instructions.

Rarely do I miss one or more of my meds. I take 3 of them. and 2 are beyond maxed out.

600 mgs of Vimpat, 600 mgs of Lamictal, adn 3 mgs of Klono[in,

Plus a VNS or Vagus Nerve Stimlator.

You HAVE to be comliant with your meds or you will have break-thrus. I was dxd with epilepsy officially on april of 03.

THese are meds that you ca not go off even if you feel good at some point and then think to go off them jsut becasue you feel better. All the time or bad results.

I have several types of szs and still continue totake all my meds,

This back and forth of taking meds and not taking meds is NOT a game.

You can hurt your self.

It would probably be a good idea to s tart a journal so that you track them adn then have to give it to your neurologist so he can at some point find a pattern.

I have medically refractory szs which means they are hard to treat.

You may haveto get compkiant with your meds abnd get riding the med merry go round that Candi talks about.

IT may get you the right med or meds for you specicif epilespy,

I road that ride for years trying to get the combo I have now.

Please stay complaint with your meds adn you will feel better becuase the sz activity will start to slow down maybe,

IT takes up to 4-6 weeks to get a drug in to somone who has never had one of the sz meds and you will haveszs until it reaches its theuraotic level.

I wish you thabest and that you stay on your meds.

Good luck.


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