Young woman in Chicago who needs help :(

[kks5005]

Hello to you all-

I have been struggling for the past few months, trying to find help or someone to talk to about my epilepsy that knows how I feel. I haven't had luck with any support groups in the area, but am open to finding any type of group that I can.

I had my first seizure in 2007 while I was studying in Rome, Italy. It was the worst timing. I was a student, traveling all over Europe and supposed to be having the time of my life. I tried to put my seizure on the back burner. I then realized it was a large problem when I suffered another one in Rome, then Athens, Greece and then in Rome again.

When I returned to the states I was treated with Topamax. I underwent all the other testing and nothing out of the ordinary came about. I thought this medical condition was put to sleep if I took 2 pills a day.

In May 2010, I had another seizure. Again the worst timing. I had 3 back to back within 5 minutes while hosting my sister's bachelorette party. All of the guests and spectators thought I was the drunk girl that was over served. I was mortified and have been guilty every since for ruining my sister's night.

My topamax doses were increased and I began to realize that the meds and my doctor were not a good fit. I lost 20 lbs, was never hungry, and was tired all the time. My doctor didn't seem worried that I had another seizure and only pushed more topmax.

My new doctor is amazing. I am off the topamax and am on Lamictal. I seem to be feeling a lot better.

So after my background, here is my issue. Not a day goes by where I don't think about having a seizure. I wake up sweating, I'm anxious all the time and I worry about what I will lose if I have another seizure...my license?

Although I have many family and friends who support me, I don't think any of them can identify with me on the level I need them to.

If you have advice or suggestions, it would be greatly appreciated.

[Rae1889]

Im in the same boat, although I have already lost my license and am not nearly as controlled as you are. Nor do I have dr support at the moment.

I think about seizures all the time. And I HATE it. I cant stress that enough. HATE isnt even a strong enough word. I cry myself to sleep at night because I am afraid of what I am going to miss next because of a seizure, where its going to be. Is some jerk gonna shove something in my mouth (happened recently and he chipped a molar) and I gonna have one in the shower, bath, bus, walk into the street. and it goes on and on. I hate how its always on my mind, even during fun times, wondering if I wil "ruin" the night.

I havent learned to cope with E yet. I keep thinking I have, and then something else comes to remind me that I havent. My life has changed so much, and I really dont know who I am anymore. But I understand you completely.

Talk with your neurologist about your fears, he/she may have some ideas.

[Nakamova]

Hi kks5005, welcome to CWE!

I'm glad you've found a doctor and a med that are working for you. It seems to take awhile for many of us to find that magic combination.

I understand your anxiety about having a seizure. I had my first seizure about ten years ago, in my mid-30s. At first I was anxious and stressed. Like you, I worried about losing my license, or injuring myself or others, or just plain embarrassing myself. Now, any anxiety has largely dissipated -- partly because I've gotten "used to" the seizures -- they are a known rather than unknown quantity, and I've survived enough of them to feel like in some ways they are no big deal. It also doesn't hurt that I'm nearly three years seizure-free. (I'm also on Lamictal). Which is not say that I don't take them seriously, just that they no longer weigh as heavily in my worries.

So it's possible that shedding your anxiety is just a matter of time. I realize that that thought may not help you when you wake up sweating in the middle of the night. There ARE strategies for right now. Seeing a therapist works for some. Setting aside a half hour every day to "meditate" can be helpful -- the meditation can just consist of relaxed breathing, and/or summoning peaceful, positive images to focus on. Getting a good night's sleep is key. Try progressive relaxation when you go to bed at night -- basically about 5 to 10 minutes of slowly tensing and relaxing your muscles, starting at your toes and working your way up. Keep your favorite soothing music handy -- that can help too.

How long have you been on the Lamictal? When I first started on it I had very restless sleep, with vivid nightmares and sweating. That particular side effect wore off after a few months. if you're still in the early phase of the Lamictal that might be a factor contributing to your anxiety.

I hope this helps a bit. I know other CWE members will have suggestions, and we are always here if you need to ask questions, or vent, or let off steam.

Best,
Nakamova

[nancyjohack]

Hi- I want to encourage you with your Epilepsy...I have a 23 yr.old son, Zach, that has had epilepsy for many years...and I have seen his life from the mom's perspective...
My encouragement for you is to live each day, live in the moments that you have, don't fear what you cannot control...and seize the day! I know that may sound trite as I am not the one with Epilepsy...but, please don't give it control over defining you! You sound as if you are very adventerous and active- continue!! My son is also very adventerous- he snowboards, and wakeboards and enjoys life. Yes, he has had seizures where he crashed and burned...but, he gets up and keeps on going- starts over. He is determined- you must be too!
Realize too that your meds have a lot of control over your ability to cope and your emotional state...if life is too depressing or if your seizures are not under control- KEEP Seeking HELP!
Also STRESS and REST must be managed very carefully!! You did not have control over your sisters' shower, do NOT let that define you.
Our son has been to many medical facilities and has tried almost all the different medications possible for treating tonic-clonic (grandmal) seizures- he had a VNS , and was a candidate for experimental surgeries, which he fianlly did not qualify for...BUT, he is now on VIMPAT and that has been such a blessing- very few seizures and he is going to college and (not driving, but he has an awesome electric bike though). Please be encouraged-seek help, health, and life! God Bless you! (Just another Mom hoping for your best!)

[kks5005]

Thank you all for the responses, all of them have made me think about something positive I should focus on. To answer some of the questions...I have been on lamitcal since November of last year. So really not that long. Maybe the anxiety will go away. I have had my driving privileges taken away and it was a horrible feeling to pay for a car while you watch it sit there. If it happens again I'm going to look at it a different way. It will be safer for me and others.

I agree yoga and meditation helps a lot. I started practicing yoga in the last 2 years and I can't think of a better places to go to calm down. You have a relaxing work out while letting go of all your stress. So...everyone try yoga. If you need the hot spots in Chicago let me know

To Just another mom hoping for my best- You sound like you are doing everything right for your son. I agree that the balance of relaxation and stress are key to staying seizure free and healthy, but that being said these are hard things to control. I have trouble balancing my job, relationships, and personal time while trying to stay in control. Lately, I've come to realize that I need to do things for me, and take a time out.

I have 3 sisters who I am always trying to take care of and be there for. I lose site that I need to take care of myself. I don't have a relationship with my mom, so it makes me happy that your son has you. Also, yoga is for boys too...tell him that

Thanks everyone...just another boost of confidence to feeling better and moving on.

[valeriedl]

I've had epilepsy for about 8 years now. I've just learned to accept the fact that I have it and I'm going to have seizures. That may sound stupid but it works.

I've been on several different meds too. On one (I think it was the topamax) all I did was sleep. I lost a ton of weight and just didn't want to get out of bed. The neurologist changed my meds and was put on another one where all I did was eat. My husband mentioned to me about how much I had been eathing and the weight I was gaining, so I'd just wait for him to go to bed and eat a half a gallon of ice cream (not joking)!

My neurologist has finally gotten my meds straighented out so I'm doing pretty good with all the side effects.

I was having some problems going on and my neurologist suggested I see a counsler because he thought it might be due to the epilepsy. I told the counsler all about this site and all the help that I've gotten off of it and he said it sounds like a really good place to go with your problems.

I hope we can help you here!