Dealing with the side effects of Anti-Epileptic Meds…can it be done??
It’s something every single person, young or old who lives with epilepsy faces…those rotten side effects of their medication(s). Moodiness, weight gain, weight loss, depression, hair loss, stress, drowsiness, dizziness, speech issues, cognitive issues, poor memory and concentration, irritability and overactivity in children…the list goes on.
Sometimes side effects can be so severe, hospitalization is necessary. But that’s for another post. Many who live with epilepsy take up to four or five medications a day so the side effects are multiplied. So how exactly can you live with these life altering changes? First, you have to change your life, literally.
As I was once dealing with extreme misery from one new medication, my brother recommended yoga. I laughed at him…until I tried it! It relieved my stress, allowed me to forget about my seizures for the one hour of class and also was great for my physical state.
If you can find a way to take care of yourself while you are taking care of your epilepsy, it becomes a great partnership. Also, you might want to research how many anti-epileptic medications you are indeed taking. One, two, three, four…what is right for you? That’s up to you and your doctor to decide, but there are epileptologists who are firm believers that there are limits. It’s something to think about.
5 Responses to “Dealing with the side effects of Anti-Epileptic Meds…can it be done??”
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RyAnne
December 13th, 2009 at 8:47 pm
I take 2 AEDs right now – and actually, they are mostly working. I’m excited. The side effects are actually rather mild, but I didn’t comment to brag. *grin*
You mentioned a side effect of hyperactivity in children. I’d like to say one of my current meds, Vimpat, does that to me, and I’m 35. I was diagnosed with hyperactivity as a child, long before they were using the term ADHD. I’m generally energetic, but had managed to learn to sit still, listen politely, and not be so entirely distractable – then in July, I started Vimpat, and it was all back. This time, I’m learning to control it more quickly, but I’ll admit I skimmed your articles because I’m a little too hyped up to really focus on reading – and reading is an activity I love.
I’ll come back and read more when I’m a bit more settled down. That tends to happen around 8pm or so. (It’s not quite 6 where I am.)
Now, this side effect is a lot better than previous ones, like horrible hypertonia (all my muscles contracting and staying that way for over a month), muscle cells lising (that means bursting open. That was over a year and a half ago, and I’m still not back to normal.), massive kidney stones, irritability, complete loss of appetite to the point where 5 fruit loops was a major accomplishment. Augh!
So, while any side effects suck, I cope with this one mostly by reminding myself that I’m definitely willing to trade mild ADHD for seizures.
Alysse
December 13th, 2009 at 9:05 pm
Thanks so much for your feedback. Obviously your neurologist or epileptologist is going to be the one who has the most input when it comes to how much your meds are affecting you, but if I may…would diet have something to do with this? Funny you mentioned Vimpat (sp??) I tried it for a few weeks (I currently take Topamax and have for about 2 years now), and it made me very anxious and also gave me some headaches. Granted every med does different things to different people, but—my fantastic doctor, Dr. Aash Shah, who I worship–always tells me that what I put in my mouth (sugar, caffeine, etc.)–will have some impact on my how my meds work!…just a thought. All the best and thank for reading!
RyAnne
December 31st, 2009 at 8:03 pm
I have tried many diets. I remember how much it cost me to cut anything with glutamate from my diet.
Nothing worked. I don’t seem to be sensitive to any foods except a few I am allergic to.
What works for me is a diet, kind of. I have to eat properly, as in following the food pyramid. I have to avoid fast foods except everyone once in a while. I have to exercise. I really really have to do that, most of all. Being in good health other than the E helps me handle the E a lot.
Vimpat has NOT affected me in the typical fashion. It makes me more hyper (OMG, that’s rather bad, but kinda fun! hahaha). It causes me not to sleep much, so I’m taking melatonin and magnesium to help with that – but it doesn’t help much. However, I don’t feel a need to sleep, and I don’t show signs of sleep deprivation, so I’m not worrying about it too much. It makes me easier to distract, but I have ADHD to begin with, and I refuse to take meds for it. I’ve already learned to mostly control it, so I’ll just learn again.
I don’t drink much caffeine usually, though I do admit I use it to self medicate for the ADHD. It really does work for me. It’s a lot better than the typical meds, anyway.
I don’t do a lot of sugar, but I have to do some because I’m borderline hypoglycemic.
I generally do eat pretty well, so maybe I already have a good diet for E.
I’m on Vimpat and Lyrica. That should make anyone incredibly dizzy, but it doesn’t do that to me at all. I tend to react oddly to meds. That’s just me.
I wouldn’t recommend the combo to anyone else, unless they are at the end of their rope. That’s where I was. I was out of meds, and out of options. VNS wasn’t going to work, and surgery was out of the question. We’d tried diet, meds, neurofeedback, counseling for stress reduction, everything but this one new med. Heck, I even did acupuncture. I’ll recommend that. It doesn’t make the seizures go away, but I have to tell you, it’s good for headaches and stress. The guy who did mine barely spoke English, but was incredibly soothing, so maybe that’s why it worked. heh
I had some headaches when I first started Vimpat that were totally out of norm for me, but after a month, they vanished one day.. I mean that literally. I had a headache when I went to bed, and when I woke up, it was gone.. and it never came back. That was the morning after the day I finished my titration to 200mg a day. Perhaps the headache was dose dependent for me.
I’m happy with my combo, and feel like it’s not a cocktail anymore. I love my epileptologist for being willing to try it when he thought my chance of it working was practically negligible.
I have learned, through the years, that I am my best advocate, and ultimately the one who makes the choice about what I swallow. Those things have helped me deal with doctors, and get a team that’s just amazing. Between them, they helped figure out what would work for me, and followed the maze of medical problems I have to the exit.
Elisa
January 18th, 2010 at 4:53 pm
I really want to try Vampat, but so scared to do the change. I’m a Hair Stylist, and have scirrors in my hand most of the day, I can’t start having seizures. Right now I’m having lots of small seizures, SP ( colors and lights funny feelings in my gut) I might have 1 CP a month but I know they are coming.
My epi has had great luck with Vampat and thinks I might be able to get rid of my SP. Used to be without out them when I started with the Topamax and Lamictal, not so much anymore.
Alex
January 28th, 2010 at 12:00 am
I have a Dr. appt in the am. with my regular family Dr. He is wanting to put me on something for adhd. I am nervous. I have not talked to my Neurologist about it yet. I am currently taking Topamax and Keppra and have been on that coctail for many many years. I have been seizure free since 2004. Knock on wood
I am afraid to add/ take away anything. But I feel that if I take something for the adhd I know most of those meds are stimulants and will maybe give me a boost and I so need that. These meds make me so tired. I have no energy ever. I never had to work out before and now that I am over 30 it seems like the last two years I just keep gaining weight! The topamax will only keep it off for so long. It will come back sadly. So has anyone ever taken any type of adhd medication? any type of stimulant at all? I have Juvenile Myclonic Epilepsy which us usually very controlled by meds. I am just really nervous about adding anything. Any opinions would be great. Thanks.