Living with epilepsy - Introduce yourself & meet others

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I am a 76 year old woman who has had undiagnosed seizures infrequently for years. Several days ago I had a seizure getting out of my car (took a while to figure out what happened) and was hospitalized and finally diagnosed. I've been put on medication and we'll see what happens. I hope it works! This one was bad!

Hi, @jdernburg, and welcome to Mayo Clinic Connect. Good to hear that you were finally diagnosed and put on medication.

Wondering what type of seizures you were determined to have and what medication you were prescribed?

@mmaryemc
Hi Mary, Are you familiar with the Stanford University Medical Center and Medical School in California? Anyway they are also a level 4 Epilepsy Center. Stanford has a Children’s Center. I was told Mayo Clinic only treats people 16 years and older, at least at the Epilepsy Center. I’m skeptical if I was given the correct age information or not.

You may want to contact the Lucille Packard Children’s Hospital a part of Stanford Medical Center.

May God be with you Talia, Mary and your entire family during these terrible days.

Jake

@jdernburg
Hi, welcome to Connect.
Can you tell us what type of seizures your having? What seizure med/s you are on?
Hopefully your medication will completely control any seizures. Medication successfully controls at least 70% of seizures.
Blessings,
Jake

@burner12
Hello Richard and thanks for joining us at Connect, Welcome!!!
I’m sorry it’s taken me so long to get back to you.
I’ve had Epilepsy for 52 years and have many thousands of seizures and have been in comas because of them. I was also in my 30’s when I got my license which I lost numerous times from seizures. Doctors told me I’d never be able to drive. I knew what it was like to drive prior to getting my license. I drove our car, uncle’s truck and tractors on his ranch. I knew what I was missing out on so for me it was really hard watching my brother drive off in his new ‘67’ Mustang. When I went more than one year I immediately went to the Department of Motor Vehicles to take my test, got 100% on written test.
I want to congratulate you on your successful surgery and your freedom and new mobile independence, a wondrous feeling isn’t it.
Go wherever you want whenever you want for whatever reason you want. When I finally got my license I gleefully drove off to San Francisco alone, I suppose just because I finally could. No more relying on walking, biking, family, friends, buses, trains or whatever. I felt such freedom, take whatever route and turn anywhere, stop anywhere etc.
I know how you feel Richard and am so very happy for you. Hopefully you will never have another seizure.
Blessings,
Jake

Hi my name is David Waldahl and live in las Vegas. Resources seem to be very limited here compared to other city's and from stories I read. I'm 49 years old and have been having seizures for about 30 years. Have always been codependent, more dependent on others. I'm having to depend on myself now and is scaring the !!!! Out of me. No confidence. Just leaving my condo is tough. I'm going to need to get a job very soon and that's something that seems impossible. I'm even getting embarrassed in public when I have one. I know it will be coming and I know that's a poor way to think but after so many years it's hard to think different. It can take up to a week to recover from a seizure or multiple ones that always land me in the hospital. Just would like advise or a friend or two. Thank you. Still have fight!

@davidinvegas
Hey there David,
I know exactly how you feel and what your going through. BUT, don’t you EVER be embarrassed (okay a few exceptions here) or ashamed that you have Epilepsy or have seizures, and that’s an order!!! The last thing that’s needed is one more person perpetuating the stigma already associated with Epilepsy, especially if it’s from one of our own. My friend in Birmingham, England had a Focal Impaired Awareness seizure in McDonalds where she removed all her clothes. She never would have known had the police or friend not told her what happened. I’ve had Epilepsy for 52 years. I’ve had well over 10,000 seizures and have been found in every conceivable place. There is virtually nothing we can do to prevent them, like it or not, we’re going down regardless of what we’re doing or where we are at. There will unfortunately always be more than enough ignorant people to keep the stigma going strong. Please don’t help them David. As far as confidence and seizures are concerned I understand it’s hard to be confident over something you have no control over. I’m assuming you live alone. You were courageous moving to your condo and that courageousness had to give you confidence to some degree. You are a very courageous fellow and I have great respect and admiration for your accomplishments. I’m sure if you think about it you’ll realize just how confident you really are. I’m curious if you may have ‘confidence’ and very realistic ‘fears’ mixed up. Anyone with Epilepsy living alone faces innumerable potential dangers and those fears and dangers only escalate when you go out in public. But like all diseases, disorders, conditions or syndromes life goes on. If you have a seizure get up when you can dust yourself off and continue along life’s journey, but you have to accept your limitations too.
If you live alone you might consider a roommate. Do you have a seizure pillow? What type seizures do you have? What meds are you on? Ever had VNS surgery or other treatments? How often do you have seizures?
Wishing you health happiness and a seizure free future.
Jake

@eallank you for your words. They are conforting. I do have a lot of worry outside of medical ones. I took care of mom for close to 5 yrs till her passing, she did her very best to take care of me. I've never wanted to apply for disability but I feel it's time. I've been seeing the same Neuro for about 12yrs. We are looking into vns but pacemaker needs looked at first. I have a roommate that I have known for 35yrs. I'm renting a room to him but there has not been any financial contribution on his part at all. Come January I will be owed over 3000$ from him. The little bit of money left over after selling moms and buying condo is gone. Boy he has it easy. Bad to mix friends and business, one always wins. I'm taking briviact, lamotrigine, vimpat, ofi, and lorazepam if I get that feeling. I do sometimes. I'll have some really weird feelings and maybe some small seizures. Most of the time I will just wake up in hospital. I'm getting very afraid of the missing time, the darkness of what happened. Ya I don't have seizers everyday but they are bad. So much damage to the rest of my body. My roommate has been here to call ambulance 2x already. I'm very uncomfortable having him here though. He is more comfortable than me. I have spoke with roommate, I won't complain but if I need to complain I usually loose my temper. Roommate brought up how lucky I am that he was here during my last seizure. To bad it was during a financial conversation. I don't like him here. It's a shame I'm not comfortable in my own house. It's going to cost money I don't have to have him evicted. Now my wife xwife what ever is unwilling to help until money starts coming in on my side. I don't blame her. Can only live a day at a time, trying to end with a smile and start morning with one. Order is received and will be obayed. Thank you for your words of wisdom. Being dependent on only myself is a lot tougher than I thought. Like a child mentally.

Hi, I am new to this forum . Just started generic Keppra. Have seizure like symptoms. I am 60 years old. Hope it helps.