Living with epilepsy - Introduce yourself & meet others

A very warm welcome, Jean!
Wishing you all a good weekend!
Santosha

Hello I’m Jean and just found this site. I have a seizure disorder since age 12 and I’m 62 now. I take anti seizure meds and have a VNS. Looking forward to meeting others!!

Excellent article. Thanks for sharing. All I know, was that I was unconscious for over 2 hours. Someday, I would like to compare notes with you, if you’re interested. Wish you the best!

@albendorf
When you lost your memory, did any of it ever return?
You mentioned you were unconscious for two hours, were you in Status Epilepticus and seizing or was most of that time when you were asleep after the seizure ended?
Of all the seizures I had in the last 50+ years I’ve never had a headache as a result from one.
Here is some information from the Epilepsy Foundation regarding headaches
https://www.epilepsy.com/stories/seizures-and-headaches-they-dont-have-go-together
Take care,
Jake

Hi @albendorf
Be welcome in this group! Thank you for your wishes!
An epileptologist is a neurologist specialized in Epilepsy. If I knew that beforehand, I would have looked for one straight away when I got diagnosed with epilepsy by a psychiatrist in 2019. But as I did not know it and was at that time very new to epilepsy, I continue treating myself with this psychiatrist and then changed to other neurologists, until I learned that the best in Epilepsy is to be treated by an epileptologist.
Since you have mentioned you are new to this medical dilemma, I suggest you to have a look at the site of the Epilepsy Foundation. I have learned a lot through it.
Santosha

Thanks! I’ve never heard of that type of doctor before. But I am new to this medical dilemma. Glad to hear you are doing much better. This forum is neat, as I get to meet people from all over the world! I am a farmer in southwest Wisconsin.

Hi @albendorf, Good Morning
I have seen second, third, and many other opinions, before finding my doctor and the best treatment for my epilepsy and myself. What I can share with you is that being treated by an epileptologist rather than a neurologist has made a huge difference. My epileptologist is also a very open doctor, treating with medical cannabis, yoga, diets, and other instruments. I am back to life!!! Do not give up on searching for the right doctor for you. Unfortunately, I can not help you with an epileptologist's recommendation in the US, as I do live in South America. But perhaps others in this group can.
All the best to you and take care!
Santosha

She is a very beautiful young lady! Life isn’t fair. Hoping and praying the doctors will find a cure/treatment to suppress the seizures. I just read a book about a young girl who had very bad seizures and eventually had a positive outcome. I will pass on the name of the book later. Good luck!!

Ouch! My first two seizures were amnesia type. I lost a lot of memory with the second one. The third seizure was the tonic-clonic type. I was unconscious for over 2 hours. My neurologist didn’t seem too concerned with my chronic headaches. She prescribed keppra for seizures and another drug for the headaches. I can’t remember what it was. But that medicine didn’t work. I am more concerned if they have the correct diagnosis, so I am getting a second opinion. If you find a drug that works for you, please let me know! Good luck and thanks for responding.

Hello, I was diagnosed with nocturnal tonic-clonic seizures about 9 months ago so I have much to learn. I have lived with migraines most of my life so I am attempting to see if there is some pattern between the two. I do know I just completed a week with covid, and that was the worst headache I have ever experienced and hope to never have to go through again!