How do you do it????

[travel bug]

I always knew that I was very fortunate compared to many of you. Until last week I had only had one tc and a fairly limited number of focal seizures. I hadn't had any seizures at all since my second brain tumor resection surgery two and a half years ago. I thought I was past really worrying about them. I remained on keppra, but thought it was only a precaution.

Then last Sunday night/Monday morning I woke up having a violent focal seizure in my arm and neck. It was strong enough to knock me out of bed. I was able to crawl around my bed to grab my "help I've fallen and I can't get up button" that I got a few years ago just in case. I mainly kept it it case I heard any strange noises or anything. I didn't really think I would have medical need of it. Not for a while more yet. But fortunately I still had it activated and I stayed conscious long enough to use it.

I didn't think I lost consciousness at all at the time, but the fact that I don't remember how the paramedics got in proves I must have gone full tc. I know now they pushed through the air conditioner unit in the window in my room, right over my head. I WAS out of it.

I do remember having focal seizure after focal seizure on the way to the hospital and in the ER. They seemed to get more severe with each one, involving basically my whole right side and including the "epileptic scream". My throat was raw the next day. Anyway, the ER was very busy and I was low priority. I kept seizing and seizing I don't know how long until they finally gave me some ativan(?).

They also finally sent me for a CT where it was discovered that my brain tumor is growing back and that I had brain swelling. After basically ignoring me in the ER (again, I know they were very busy but still....), they kept me in the hospital for four days. I must say that everyone in the hospital after the ER was super nice and caring.

Anyway, it was a horrifying experience. I don't know how those of you who have severe seizures on a regular basis cope. :hugs:

 

[Frink]

Sorry your tumor is regrowing and you had a bunch of seizures.

As far as "How do you do it?", I deal with my seizures because I have no choice, this is my life, it is the only one I get.

 

[Porkette]

Hi travel bug,

Sorry that your have another tumor growing back this is probably the main reason that you had the seizures.
In regards to "How do you do it?" I've worked around a lot of other people who have had life a lot harder than me with just the seizures. I have worked with people who are in their teens and it wheelchairs for life and I have a cousin who was in a auto accident and paralyzed from the neck down for life for at least 30 yrs. The seizures only last a short time and that don't happen every day where having other medical problems or even emotional problems can be a lot harder on someone each and every moment of their life.
I wish you the best of luck and May God Bless You!

Sue

 

[Cint]

Travel bug,

Sorry your tumor is growing and you're experiencing seizure(s). One thing that bugs me in your post is that those in the ER didn't get to you immediately, but left you seizing. You could have gone STATUS if they had left you any longer!! Especially if the seizure was a TC!! That is a HUGE NO-NO in a hospital!! Someone needs to be held accountable!

What has kept me going all these years is my children, even tho they are grown and on their own now. I still look forward to seeing them and having them know I'm still here.
And like Frink said, this is the only life I get, so no use in cryin' the "why me?" tune.

 

[txtiger]

Travel bug,

I'm sorry to hear your tumor is growing. And I am also appalled by how they treated you in the ER. I have never had to go to the ER because of my epilepsy (though EMTs were called once, but I told them I didn't want to go to the hospital), but unless they were crawling with gunshot victims I can't imagine repeated seizures would be low priority.

As for how do I do it? I've considered myself lucky. I've always been able to work, had family and my boyfriend who are willing to help when needed. When I was younger, I had my "why me" moments, but in the back of my mind, I knew others had it much worse.

 

[acshuman]

Learn How To Ask For Help!

travel bug,
A person w/E has to develop the ability to find people who are going to be part of the supportive group you need around you. Many times a person w/E has to learn about the many different organizations that exist that can have members or know of people who are the type of people you need to have as friends! The great thing with doing this is that you are going to get experiences told to you that other people have had. When this is done you will learn what that person did to get through that experience. Each person may have done something different and you will learn that there are numerous things that you can do and you will also see that things have worked for others so you can have that knowledge and be able to use that knowledge if you ever have to. You also can then provide that knowledge to others knowing that it is something that works and by doing this you get the good feeling of helping others when they need help! :twocents:

ACsHuman

 

[valeriedl]

As far as "How do you do it?", I deal with my seizures because I have no choice, this is my life, it is the only one I get.

This is how I feel too. This might sound odd but if I stopped having seizures things just wouldn't seem right.

When I was diagnosed with epilepsy I had to move back home with my parents. The man I had been dating then lived about 15 min away before I had epilepsy but after that he lived about an hour away from me. He had come to see me in the hospital, about 20 min away, but once I moved back home he really got tired of having to make the drive and having to do all the driving in general. We broke up within a month.

I met my now husband about a year after that. He only lived 15 min away so the drive wasn't bad. He saw me have my first seizure, a month into our relationship, and I had to go to the ER. My mom met us there and thought for sure that he was going to stop dating me. It was the complete opposite. He told her that I was one of the best girls he'd ever met and he wasn't going anywhere. He wanted to learn as much as he could about epilepsy as he could after that seizure so he started going to my dr visits with me. He could tell the neuro things that were going on, ask questions and get answers. 12 years later now he's seen me have more seizures than anyone I know, even my parents, and he's still around!

I have very few friends left, who live a good bit away now, mainly because they don't want to deal with the driving. We talk on the phone a good bit and make plans to get together. Only one of my friends saw me have a seizure and it scared her to death but it didn't scare her away!

It's defiantly my family and real friends who keep me going.

Don't give up - keep going!

 

[travel bug]

Thank you, everyone, for the kind words, advice, and perspective.

It is going to be hard for me to have to rely on my mom and sister for more help. Even though I've needed them before in the past, I was also at the time the full-time caregiver for my dad who passed just a few months ago. I had been planning to get my life going again so my dad, who had felt so bad about me giving up so much for him, could look down on me and see me living the life he wanted for me. It's because he made sure I had good insurance that I'm still around so I really wanted to honor his wishes. I was afraid I wouldn't be able to live that life, but you've shown me that a good, productive life can take many forms. I May have to change my plans, but hopefully I can still make him proud.

As for the ER, yeah, it seems pretty irresponsible. I think they get jaded there and think that some people are just looking for attention or something. If they don't realize the different forms of seizures, they probably thought the screaming was just me being a drama queen. But, God! How I wish I could have stopped. My throat was a painfull, raw mess.

Anyway, thanks again for responding. You help keep things in perspective and even give me some hope.