Not sure if I should start meds

[Iman]

Hello everyone,

I am really happy that I found this forum. I had a few seizures when I was around 4 years old, I am now 28 and started twitching and having muscle spasms after I had my second child 4 years ago (no seizures or symptoms since the age of 4). The EEG confirmed that I do have epilepsy and the neurologist basically gave me a list of three medications to research on and decide which one I would like to try out, they are Dilantin, Tegretol, and Keppra. The medications would be more for preventative purposes since I only twitch right now. Im really scared to start medication especially since I havent had a seizure yet, and Im wondering if I should just wait to see what happens (no meds) because I can live with the twitching. I also have alot of pain in my legs that also started when I was young, dissapeared at the same time the epilepsy did, and is now back and very strong. I am having an EMG done tomorrow and they think it might be related to the epilepsy. I dont know what to think, I dont see anyone else with epilepsy having sharp leg pain so Im not sure if its related. I am on pain medicine for that but the neurologist thinks that one of the epilepsy medications might also work for the leg pain. Does anyone have any suggestions? Im really confused and stressed out about what to do. Thanks in advance!

Iman Williams

 

[skillefer]

Hi Iman! Welcome to CWE! Well, do you know what's triggering your seizures? Many of us keep journals where we record what we eat, drink, and how many hours we sleep, as well as any stressful situations each day. Then, we go back and look at what we wrote down and try to see if there is a pattern. For many of us, sleep deprivation can trigger seizures. So you might want to start keeping a journal. Also, check out the alternative treatments page in the forum. Some people have found that taking vitamin supplements like magnesium helps cut down the number of seizures, or even eliminates them. Still others use diet or eeg neurofeedback. Check out the material in the Library here, and feel free to ask questions.

 

[Iman]

Thank you for the reply. I noticed that my twitching and muscle spasms happen more when I am thinking or talking about something that stresses me out. It also started happening more when I decided to go back to school. Now that finals are over, my twitching has decreased drastically but I will be back in school in two weeks. So I was wondering that since it happens more with anxiety should I then just take medicine for anxiety and maybe the twitching will stop? I dont know if its worse to take anxiety medication or epilepsy medication. Also the neurologist said that my type of epilepsy is spread through out my brain and this type is hereditary. Is that true? Thank you!

Iman

 

[Bernard]

Hi Iman, welcome to the forums. :hello:

Have you had any tests to check for vitamin/mineral deficiencies? Seems like that could be an issue with changes that ensue from pregnancy/delivery (and high stress from lack of sleep / school / etc.).

All AEDs have side effects and I'm not sure if it were me, that I'd take any of them if I weren't having uncontrolled seizures. I'd look to some alternatives that might help raise the seizure threshold first (but that's me). :twocents:

 

[Elaine H]

Hi Iman,

You asked me about the Keppra, I've been on it for about 18 months, and it hasn't had any effect on improving my seizures, but it's fair to say that none of the AED's I've taken over the last 22 years have worked, but then Temporal Lobe Epilepsy and Complex Partial Seizures are the most difficult to control. I can tell you the side effects of Keppra include, dizziness, drowsiness, irritability, insomnia, some unsteadiness, tremor, headache, nausea and loss of appetite in higher doses, or with dose increases. I have really only had the insomnia and loss of appetite, what dose are you going to be on? I'm on 1500mg am and 1500mg pm which I think is quite high. Keppra is usually recommended in Partial Seizures where previous treatment has been ineffective. The Tegretol is prescribed against generalised Tonic Clonic Seizures and Partial Seizures, Tegretol is ineffective against Absences, and may worsen Myoclonic Seizures. The side effects with Tegretol include, skin rash if allergic to Carbamazepine, blurred vision, double vision, unsteadiness and nausea may occur initially, or if the dose is too high. I think Dilantin is quite a new drug, and the only one I haven't taken, and with all the books on epilepsy in the house, I can't find anything about Dilantin anywhere. I'm not sure about the connection with the pain in your legs though, do you know what causes your epilepsy, and what sort of seizures do you have?

Let me know, and try not to worry too much, it can be a case of trial and error trying to find the right drug, monotherapy, or combination of drugs polytherapy, hey, I've had epilepsy since 1986 and we still haven't got it right! But I'm still smiling, and like my professor John Duncan who looks after me said, he is determined after all these years to get me seizure free. Enjoy this wonderful website, and just think of all the people out there who are so much worse off and more poorly than us lot eh? Take care and keep in touch eh?!

Cheers
Elaine

 

[skillefer]

Personally, I'd try some stress reduction techniques first, see my doc and have some bloodwork done to see if I have any vitamin or mineral deficiencies, and then try making some dietary changes (cutting back on caffeine, not eating any artificial sweetners, etc...) and taking vitamin supplements like magnesium and Fish oil before I started the meds. But that's just me. I haven't taken any of the meds on your docs list...but I had a friend who took Tegretol. Her two major side effects were weight gain and facial hair. But all meds have side effects. No matter which one you try, you'll probably find yourself really tired for a couple weeks as your body gets used to the med. Keppra has a history of causing severe anger outbursts...but I think it's Vit. B-6 can help keep that in check.

As for the seizures being hereditary.....actually, anyone can have seizures. It's just that we have a lower threshold than the average person. In other words, it doesn't take as much to make us seize. As for your kids having it....I don't know. That's something that you'll just have to wait and see. Genetics are like dice. You can have two people with brown eyes have a kid with blue eyes. If you go back far enough, they might each have given the recessive gene for blue eyes to their kid. So even if it's hereditary, it's not guaranteed. Read the Epilepsy 101 thread in the forum. It'll help.

 

[RobinN]

Knowing two years ago what I know now.... Nope, would never have started my daughter on the merry-go-round of drugs. She has improved with vitamins and minerals that support brain function. She has improved with a better nutritional plan that is good for over all health, eliminating some "foods" that excite the brain. The best thing we have done in the past three months is begin neurofeedback. It has improved the quality of her life greatly.

Is caffeine a part of your school regime? It can lower the magnesium in your body. Magnesium is known to calm the brain. Also consider eliminating foods that are high in estrogen. There is a list on this site:
www.dogtorj.com

Glad you joined us. I admire you for considering your options, and I admire your doctor for letting you do some research prior to writing the prescription.

 

[Nenne]

Hey Iman,

I have eaten Tegretol, and it took down my seizure quit alot, and what my doc said its the best on the market. I cant eat tegretol sense i got allergic and moody but it did bring down the amount , but its suppose to be a pretty good medicine, and my doc said that of all the meds this is the one with least side effects.

aja thats what i know