The Storm Within

Information

This is a home page where members can come and relax,ventilate or discuss any of the emotional aspects of having E. As well as anything else going on in your life that needs emotional support.

Members: 302
Latest Activity: 1 hour ago

Welcome!

Just wanted to give a Warm Welcome to all new members!

Hope this group will be a good place, not only to get support, but to also work through the days that having E can do to us emotionally.
Its hard enough dealing with side effects of/changes with meds, doctors, the "trauma" of the seizures themselves,our own research and trying to find answers. Then you throw in how we're feeling about,not just having E, but how other people may respond, anxiety and possible depression that may tag along(or that may show up seeming like it just showed up overnight without any reason why) or even a form of PTSD (post traumatic stress disorder) -which for me started a few years ago anytime I have an episode, as well as many other issues.
All of these things are just as important (and for some maybe even more so) for us to work on or work through.
We all have good and bad days and hopefully we can get through them together! :)

Jenn
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ATTENTION:

To the people that are causing problems in this group -
This is here for people that have Epilepsy and friends/family that have the condition who are in need of emotional support.
If you are not here for any of those reasons...please appologize to all of the member here and find another place to go. If not...you will be banned and the website manager will be made aware of the situation which could result in being removed from the site completely.
Thanks.
*Group Administrator.

Discussion Forum

Reading 4 Replies

Started by stacy prentice. Last reply by Kari Lynne Brauer 1 day ago.

causes 10 Replies

Started by stacy prentice. Last reply by Helen Crenshaw 1 day ago.

12 year old (teen) unable to get up to go to school 6 Replies

Started by Helen Crenshaw. Last reply by Helen Crenshaw 1 day ago.

Comment Wall

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Comment by Rose marie duncan 1 hour ago: thankyou Carlton i hope all goes well with you, Marie

Comment by Marlene Emmett 1 hour ago: Carlton:
Hope all goes right for you when you have the LTM.
Getting our medication "regulated can sometimes be pure hell" and can take
years or the doctor can hit a home run and find the right medication on the first try~ My third doctor found the right medication after my 1st Grandmal.
And I've been on it for over 40 years and I'm seizure free for 23 years.

Comment by Carlton Zeigler 1 hour ago: I saw my epileptologist today. He agreed that I am over medicated, but only agreed to a slight reduction in medication for now. He wants a week long, LTM, in January to play with my medication.

Comment by Carlton Zeigler on December 14, 2009 at 4:16pm: I will also find out on 12/16/2009 when my next LTM will be scheduled. I hope they will wait till after the new year.

Comment by Carlton Zeigler on December 14, 2009 at 4:12pm: Rose Marie

Good luck with your VNS. My VNS was installed in 2005. It is shut off at the moment. It was shut off in October to be certain that it was not the cause of other difficulties. It will likely be reactivated on 12/16/2009.

Comment by Rose marie duncan on December 11, 2009 at 5:42am: hello everyone got my vns put in yesterday ,the surgery went well had two seizures in recovery though .it will not be turned on untill two weeks ,i sure hope this thing helps, i am very sore but not a lot of pain, thanks for all your help marie

Comment by Jared Gonyer on December 10, 2009 at 11:59pm: ok sorry its been so long since ive been on. i got out monday. the dr came in bright and early after id been up all night. just when id fall asleep the nurses would come in to do vitals and of course they couldnt do it quietly they had to chat so i would wake back up. cant tell you what the dr said, i have no clue was still asleep, couldnt even tell you 100 percent that she was there, but im pretty sure she was there. about 745 the eeg tech came in and unhooked me while ripping out a lot of hair. for some reason they refused to get all the glue off and told me it would come out on its own in a wk or so. i requested some of the glue solvent that they used but request denied. they gave my 1500mg keppra in an iv in about 15 min before rushing me out of the door. when i get home i take a shower and try 91% rubbing alcohol and paint thinner to get the glue out....neither worked. so i got out and just shaved my head and took another shower. finally i defeated the glue. monday no seizures. tues 1 wed 2 today none. tonight i know im not supposed to but im not really caring much at this point, but i got a 6 pk. im enjoing myself for the time being ill deal with the consequences later. the keppra is not working anyways and the drs not switching meds until the results of the video eeg come back. just thought id update everyone. thanks for keeping me in your thoughts.

Comment by Marlene Emmett on December 10, 2009 at 9:37pm: Alysse: Welcome to the discussions and to the boards.
That Welcome also goes out to Tony,Kate,Elisa,Joy,Tracy.

I've been out of town last week and have just got back to my computer.

Comment by Alysse on December 10, 2009 at 9:26pm: I had my VNS implanted in March of this year, after two failed attempts at surgery, once at Hopkins and once here in Detroit with the wonderful team at DMC-Wayne State. It was just way too risky--my seizures come from both sides of my brain and there would be too much damage if they did surgery.
My VNS is working very well, I can tell you. My doctors figure it's about 50-60 percent effective in reducing my seizures. The interesting thing is, my 'recovery' after a bad day--in other words, if I have 2 or 3 smaller episodes within a couple of hours...is so much better. I used to have to take a few ativan and I was in bed for 24-48 hours. Now, I can rest for an hour or two, and I'm myself again.
Yes, you feel the device activate on its own, but you get SO used to it. And yes, they can remove it if it is not effective for you. I would speak to a good epileptologist at a good hospital that specializes in epilepsy--and a neurosurgeon who has done these before. Also, call cyberonics...they are wonderful to speak with (makers of the VNS). Good luck!

Comment by tony on December 9, 2009 at 10:05pm: In regards to Elisa's comment on VNS, some of your facts are wrong. Vagal Nerve Stimulators can be removed. Also, where are you getting your statistics from? 1/3 it works and 1/3 it gets worse with a VNS implanted? Never heard of that. In fact, VNS does work well for some people who have failed multiple AEDS. For some people, it does not work - - as does multiple medicinal interventions.

I do know most doctors underutilize VNS because they are uniformed on the clinical criteria and success rate in controlling seizures. You are correct that the Vagal Nerve is important. However, VNS implantation has a relatively low risk of damage to that nerve. The upside in seizure control is enormous and can be literally a life-saving decision.