Epilepsy Foundation

Adult Onset Epilepsy Group


Adult Onset Epilepsy Group

We all have many things in common by just having epilepsy, but being diagnosed as an adult has its own challenges. We may be grateful that we have not had this our whole lives, but it can be very disruptive when it starts in adulthood.  Here we can discuss the challenges we face, the treatments we found helpful and how we as adults must advocate for ourselves.

Members: 17
Latest Activity: Aug 12

Discussion Forum

Hello, am I alone here?

Started by Jasmine Harris. Last reply by Twila McDonough Aug 12. 3 Replies

I think that being diagnosed in adulthood presents a unique set of challenges.  Am I the only one?  I mean, I don't want to have arguments about who has it worse (we can't still be in this stage can…Continue

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Comment by Kathy Roady on July 13, 2015 at 12:04pm

Hi Jasmine - I just now found this group and am glad to see it. I think there may be a lot of us but, if they are like me, I don't stick my nose in much because there's just so much I don't relate to. And other folks don't relate to me much going the other way.

I think Alan is right about it being more difficult to cope - we had lives without seizures and now our worlds are turned upside down. I divide my 'history' between before and after the seizures started.   Mine started when I was 48, I'm 56 now.  I never knew it could start so late and so out of the blue, except maybe because of an injury or something.

Has anyone else had problems with people not believing you, especially at first?  My husband has been very supportive, probably because the first two happened at night and scared him to death. I don't know what I'd do without him. Not so much with the rest of my family. They hadn't heard of adult onset either, and since it didn't fit the image they had of what a seizure looked like (generalized) and I have partials, they decided I was making it up / being a hypochondriac / trying to get attention / misdiagnosed. I got more support from friends & church family - most were "oh that's terrible" and "what can I do to help" and even a couple of "oh, I've heard of that" (nurses).  Frustrating. But nice to have a support network here.

We're taught that God has a plan -  sometimes I wish He'd let me in on the secret.  :)

Comment by Sandra L Salyer on April 24, 2015 at 12:11pm

Back in the 80's I had a hemangioma and hematoma in the frontal lobe of my brain causing grand mall seizures. I had surgery. As a result I continued to have grand mall seizures on a consistent basis forcing me to quit work and go on disability. I went through an array of medications finally landing on Topiramate which stopped the seizures. The only problem with this drug is it gives me a sense of short term memory recall issues. Some people have other issues. I have none. Up until this last March I was seizure free for 17 years. One thing I discovered through a pharmacist. People with epilepsy should not take antidepressants or anything that messes with their serotonin levels - like SSRI's. I found that out the hard way. I went to the ER this last March for food poisoning. They gave me Compazine, I nearly stopped breathing. Then they tried to backtrack and flood me with multiple other drugs. I questioned every drug they tried to put in me and refused several. One of which was lorazepam a benzodiazepine. They released with the Rx Zofran. I did not research it, which I should have because it's an SSRI. I took it for five days I did not sleep, eat, was so confused was unable to track how to take meds 6 hours apart, and couldn't even remember to take my seizure meds. Friday at 2am I knew I was in trouble, I began praying and searching for answers. The only solution was the Zofran. I stopped taking the drug. Saturday morning my system calmed down. The anxiety was gone. My mind cleared up and I was able to take my seizure meds. Unfortunately the damage was done. Saturday night I had my first of two grand mall seizures. The second was Sunday night - eighteen hours later. I knew I needed to build my blood levels back up so I did take extra Topiramate on Sunday, obviously it didn't help. Sunday I headed back to ER. They did a CT Scan, loaded me up with a sleeping pill and lorazepam and sent me home with an Rx of clonazepam and instructions to see a neurologists. My question - does anyone here take clonazepam? Have you tried to get off it? I've been on it since March 8 and can't get off. I hit the half-life level and literally feel like I'm going to go into a seizure. The withdrawals are torture. I've now been referred to a counselor. I've even considered rehab. My neurologists even increased my Topiramate to protect me from seizures. The anxiety and stress to get off this clonazepam has consumed my life, which doesn't help my epilepsy. I can't drive. I walk a lot - I'm walking 5 miles a day to walk off the stress. Any suggestions?   

Comment by sharyn guarino on April 20, 2015 at 8:15pm

It will be 2 years since my diagnosis (about 2 weeks after my 43rd Birthday) and up until then I had never even heard of adult on-set epilepsy let alone knew anyone that was epileptic. It has definitely been a life changing experience! In fact it has been a learning experience for my entire family, parents, siblings, children & grand-babies. Until my diagnosis, no one in my family had seen someone have a seizure. It's a hard pill to swallow being so vulnerable in front of family (and strangers) at times. But I have a wonderful Mom who has been here for me since day 1 and we have adapted to using humor to get through the rough patches. 

Comment by keritiger on March 19, 2015 at 10:39pm

As an being diagnosed out-of-the-blue, it was a big blow to me I know... I felt as if my whole life had changed as I went from being in control of alot of things (being a mom) to nothing.  This happened on my 29th birthday and the doctors still can't figure me out they said? 

Comment by Brittany on October 20, 2014 at 10:49am
Hello everyone, I was just recently diagnosed with epilepsy and I was wondering if you guys new of any support groups
Comment by Jasmine Harris on July 15, 2014 at 9:56am

Thanks Alan!

Comment by Alan William Gear on July 14, 2014 at 3:12pm

Hi jasmine,

     I have for years tried to make sense of it and can't so don't spend to much time on trying to figure it out.  You are right about the anxiety, I believe today that is my biggest issue is with anxiety.  Today my body will do things that resemble a seizure, but I believe that they are anxiety and stress related.  What we need to do is to watch for the signs in our life that bring about the anxiety or stress and eliminate them the best that we can.  Then we need to continue to move forward with our life and journey that we are all on.  Then we can enjoy our life the best that we can.

God Bless!!


Comment by Jasmine Harris on July 14, 2014 at 9:36am

Thanks Alan, I appreciate you participating and your perspective! We are all unique, brains are super complex right? LOL

I'm just struggling and trying to make sense of it.  And it doesn't. Honestly I think I'm less affected by seizures and more affected by anxiety over having them at all. I watched videos of seizures with my 15 year old daughter to find out what I look like.  I found one and the girl is a toddler and I can see it in her face.  I can't imagine that fear as a small child like that, it really broke my heart. 

I think you are right about the sort of "crash" this brought for me though.  I had my own car, house, I really felt like for the first time in my adult life I was finally free.  I was working and back in school and enjoying my life and actually looking forward to a future.  I'm very grateful to know that feeling, but I really miss it. 

Thank you for your response and perspective!

Comment by Alan William Gear on July 13, 2014 at 4:41pm

     Hi Jasmine, I have had epilepsy all my life and you are right about epilepsy making us unique.  I for one am glad I had epilepsy all my life. I was able to cope with my situation much easier as a child than if I was diagnosed when I was an adult. If you had your health all your life and now you have a disability that you need to cope with can be a very difficult task.  

     It is no different than if you have been given everything your whole life from your parents and all of a sudden that comes to an abrupt stop for whatever reason.  In theory, If all of a sudden the flow of money that your parents were giving to you stopped, and now you need to go and get a job that you never prepared yourself for as an adult.  That also would be a life changing event along with if you had your health and it is now taken away how could you or anyone prepare themselves for that?

     To answer your question, we as epileptics are all unique and in my opinion. It is much easier to adjust to anything especially health problems such as a disability at a younger age before we get to comfortable with our life and then need to make a major change within our lifestyle. I am not saying it is any easier to have had epilepsy all my life.  I am only saying that for me I believe it has been easier to cope with my situation. You now need to look at your life in a much more simple way depending on how your epilepsy is effecting you and take care of your health as we all need to.  Keep your head up Things could be much worse than being diagnosed with epilepsy. You could have been diagnosed with a fatal disease that would for sure take your life.



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