Living with epilepsy - Introduce yourself & meet others

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!

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

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

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 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.

Hi, Perhaps I am late for connecting with this group but perhaps there is no such thing as never too late. At 39, 30 yrs ago I had my 1st seizure (maybe) w/ 3 kids not being able to drive was the worst thing I could think of. Having the seizure because of a stroke (?) wasn't great either but that was ruled out but permanent right side weakness occurred. After 12 mos I did get to drive again but finally 7 years later after my 3rd accident they found out I was having continuous generalized seizures and took away my license I was angry later called highway patrol officer and thanked him who knows whose lives he may have saved. I've dealt with severe depression but finally have gotton to the point where I am like I same I am no different than a doctor with a really crappy day with a whole lot less money and goodies but frankly thats life. I got a VNS implant 5yrs ago and the intermittent "shakes" are gone. I turn 70 in a few months my kid once 8,10 &13 are all in their 40s nearly 50 yrs of marriage and a lot of up and down there too life hasn't been easy so I realize all of you coping with epilepsy especially those with grand mal and more complicated mine probably seems like a walk in the park so whether you are at the beginning or middle or don't know where (like me) well ==== Leslie == Oh if you are diabetic, with eye problems, GI problems, Kidney, back, == well I here for all that too. I kind of have cornucopia of issues. 🙂

Hi @senoj18 Good Morning
A warm welcome to this group.
Reading and learning about epilepsy could be very helpful at this stage. At least it has helped me much when I got diagnosed in 2019. I could understand certain reactions I have had in the past (I have lived with epilepsy without knowing it for 30 years). The Mayo Clinic has several nice materials on epilepsy. Have also a look at the Epilepsy Foundation website.
Have a nice Sunday!
Santosha

Hello….my first time and I feel like I don’t have enough information on having seizures or dealing with having them…

Thank you so much have a good weekend as well.
Jean