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OVERWHELMED123 posted:
My family and I have been going through tough times resulting from my wife's seizures. We have been seeing a particular neurologist, who placed here on dilantin. I have researched alot of the pros and cons of this medication and it seems the risk of her intense seizures out way the harmful side effects of this medication. I am lost for words.... I am so scared that the seizures or the dilantin are going to end her life. I live in Texas and it seems every route I take is a dead end when It comes to the discovery for the reason she is having seizures to begin with. I have noticed that the dilantin cause alot of swelling around her eyes and her mood swings are intense to say the least, Ishe takes 400mg of dilantin and also 300mg of trileptal daily. She currently recieves disability payments monthly,which just isnt enough. I have been layed off from the oilfeild, which is a blessing because now I am able to monitor her daily....It has consumed me in many ways, I dont mean to sound selfish but I am scared to even take a shower and not knowing if she is ok, She smokes and goes outside to do so and I am driving myself, my kid, and her crazy because I allways call her name every few second just to get a response from her to acknowledge me that she is ok......It has really felt good to vent on this site, and if anyone reads and has advise for us, please feel free. Thanks for the creator of this forum...yours truely...overwhelmed
dancer86442 responded:

Venting is Good! Venting Here is Even Better! Welcome to our Family. Welcome to my Home here in Epland. I've lived in TX. My Daughter & Son were Born in Texas. Dallas, is Where my Adult Seizures were re-triggered & my Daughter, who still lives in Irving, developed Seizures. Clik on my Pic or ID to Learn more about me.

I am Not a caretaker, but, I've been here to Support & Advise for 20 yrs. You & Your Wife are Not Alone. I have a Few Questions. I do hope you reply.

When did seizure activity start? I'm sure the two of you have discussed this: How is She Dealing With her Diagnosis? How does she Feel about her Disorder &/or the side effects of Seizures & meds? How Long has she been on Trileptal? How Long on the Dilantin? Does she take them Same Time, everyday?

Honey, if used properly our meds shouldn't Kill us. Seizures Can! But, it is Rare & is mostly due to Suffocation or SUDEP, Sudden Unexpected Death Due to Epilepsy, which has No Explanation, sometimes. People whose Seizures last longer than 2-3 minutes are at High Risk, also. I'm not saying this to try to Scare you More! This is a Fact that All with Epilepsy Need to Know! We All take Life One Day at a Time. I know I am Thankful that I continue to Awake every morn.

Advise. Take a Deep Breath! I just Did! Start a Daily Journal. Read the Info about Journals located under Tips. Last page, I think. Scared? OK, but, she Can Sense that & it May stress her! Again, Take a Deep Breath & Remain Calm. Keep in Mind, she is Still a 'Normal' person. And Deserves to lead life as Normal as possible! If you are gonna Stress, take it to another Room or Leave someone who can remain calm & Knows Proper Seizure First Aid, w/ her while you take a break! Stress is Not Good for her. It is a Trigger, sometimes. A Journal will help you Learn what her Triggers Mite be & to Avoid them. Triggers are Not causes. As to Cause: Over 65% of People With Epilepsy have been diagnosed as 'Cause Unknown'. &/Or it may take Yrs numerous Opinions/tests to determine Cause. For Now, It is Best to Focus on Ways to Control the Seizures & Side effects.

So, now we are down to Side effects. Side effects as you know come with All meds. Even OTC. Side effects are what we watch for, not necessarily what happens. All our systems are different & 'unique' unto us as to how our meds are processed & how we Adjust. So, what works for one may not work for another. And same w/ Side effects. Most side effects can be diminished &/or eliminated by a Proper Nutritious Diet! High Fat (Good Fat) & Low Carbs. Avoid Gluten. Foods & Additives can be Triggers, too. More Info in Resources if Interested. Her 'mood swings' can be alleviated w/ B6 or B Complex Vitamins. Start Slow! Low Dose & increase till you/she notes a difference. Swelling around eyes. Alternate cold/warm cloths. Ask your Pharmacist about drug-related effects & & OTC meds to use.

How old is your child? You realize that scaring him is Traumatic to him, too? He too needs you to take a Deep Breath & Chill! Suggestion: Can you afford a small dog? Search for National Seizure Disorder Foundation. Contact Tonya. She may be able to help you get one. Free! Or you can 'adopt' one from the Pound. But, spend a few days w/ the dog B4 adopting. Some Dogs, Can sense Epilepsy Episodes, B4 they happen & All dogs can be trained to Respond!

I Hope I helped. Feel free to continue to ask questions, vent & find ways to Cope w/ us Helping!

Make/Take Time for a Break! Soon!

Love Candi November is Epilepsy Awareness Month. Show your support for Awareness & a Cure by wearing Purple & place a black lite in your porch lite or in the Window. Educate others' on this Never ending, forever Learning Journey! HUGS!

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For more information, visit the Duke Health Epilepsy Center