Living with epilepsy - Introduce yourself & meet others

Hi Senoj18, I totally agree with Santosha about looking to the Mayo Clinic on line for information I trust them more than any other site as my first line of information. I just connected too. I think some of the worst things about not knowing about if something that is happening is medical ( for me it was staring ahead and not responding) or something else which others took to mean I was somehow not doing thins right. Eventually I got my kids and friends if I didn't respond quickly to things to ask me if I had taken my medicine most times I hadn't = Asking you friends to tell you when things seem a little off may help. Now I am jumping to a conclusion that since you didn't know you had it you had generalized, petit mal, myoclonic or whatever your neurologist calls it just not the grand mal. Since I am new to this group please tell me if this is more info than I should give or if there are any guidelines that a good to follow. Sanoj18 I sure hope you are doing OK it is not easy to cope with a life altering illness I am sure with over 400 in this group there is a lot of insight.

I posted a comment to another person who just joined and asked whether or not what I posted was more detailed than what is thought OK and whether there were guidelines. I have gone through so much coping w/ the diagnosis the MDs deciding I needed treatment for depression when I wasn't actually depressed later yes. Today I am trying to find things out about my VNS implant and I went a Mayo Clinic article and I found the group chat and someone was talking about a VNS battery and they had a VNS implant that hadn't worked since it had been put in 21 yrs ago. I was going to say mine stopped the small seizures I was having and maybe a newer with modern technology be different. I definitely would feel the same especially with older technology also there are medical schools that nowadays can give virtual second opinion visits Stanford does that and they have epilepsy specialties the Mayo clinic I'm sure does as well. That was what I was hoping to find any info that others who have VNS might share.

Hi @1775house Good Morning
There is never being late to connect to us here in this very nice group. Be very welcome!!!!
Santosha

Hello all, just found a good information on what can also cause seizures. I am trying to find the root causes. This is one of them. There has to be some improvement in epilepsy area and recovery(not with surgery!). It's a long time patients are told you need to stay the way you are and stay with meds. I pray this area of medicine heals people and not have more side effects.

Amazing @shivb ! Thank you so much for sharing that with us.
Have a great day!
Santosha

Hello @1775house and welcome!!!

It is good to know you have a VNS implant that it works for you. I have had one for more than 23 years and have not seen any benefit from it. Only the addition of a miraculous drug has made me seizure free. The battery is now dead and a doctor will remove the device. When I can afford the procedure out it will go!

I recently been diagnosed with Epilepsy. And I'm trying to find a good support group

You just found it! I was diagnosed last year and I have found so much information here, and am very grateful. While I have a good neurologist, he is not a specialist and only has so much time to talk with me. With this support group be sure and read everyone’s comments and you will learn much. So welcome and I know this will help!

@ romulun1
Hi,
Welcome to Mayo Clinic Connect.
Would you mind sharing more information about your seizure disorder?
Take care,
Jake

I am not sure 25 years ago I would have done it ---- you know I was just about to erase that statement but I did not why? because I would have if my doctors had suggested it - I was so depressed because I could no longer drive I had 3 kids under the age of 14 when it started, PTA was over going to get groceries when I needed them had to wait to ask for someone else = I think most everyone gets the picture. The psychiatrists who thought VNS was the new treatment were trying to get the neurologists to approve it for me over at Stanford University Hospital in California to treat but they wouldn't they would even for my epilepsy. It took them 18 years actually to (9 more years after the psychiatrists stopped trying) decide that the VNS might be the best thing for me. Except for the beginning when I had grand mal seizure I have had generalize seizures. So any one who has had a VNS from a long time ago I am going to guess you might be among the beginning of the recipients the VNS implants therefore the both the first neurosurgeons who implanted them plus the first devices - not the very first but before they were known let's face it even outside the epilepsy neurologist they are barely known 🙂 I do not have have really complicated or a severe case of epilepsy - but I have come up a whole lot of complicated minor issues only because because of the years that go by and that I have just like at the Mayo some great doctors. Long winded hope it helps and I'm glad I joined this group