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Hello everyone. I am a 32 year old male from New Orleans. I've never joined a site such as this, but I hope we can all help each other with what we're going through.

A little background: My first seizure happened when I was 18 years old, a grand mal. I saw multiple neurologists and other doctors but we never found any specific cause. I have continued having them about once every six months since then. Having epilepsy has stopped me from having jobs many times. I have learned to live with it mostly, but it is very tiring to deal with sometimes. This year, 2017, has been my worst by far. In April of this year I had a grand mal in the lobby of my apartment building, fell backward, hit the back of my head on the floor, had to get four stitches in the center of my skull where the occipital bone protrudes, and ended up having four grand mals back to back that night. Ever since that set, I have quit my job due to extreme anxiety, depression, and many other cognitive after effects likely caused by a concussion from the fall. The anxiety and depression have completely stopped me from being able to work since April, but my body was slowly healing. Things got better over the summer. I was finally able to get out of the house by myself and go on walks without panic attacks, I had energy finally, I was hanging out with old friends, life was getting back to normal, or so I thought. in mid-October, I had another series of grand mals, this time around six I'm told. Thank goodness I was at a friend's house when the first happened. He told me I turned blue as a smurf, with veins popping out, and my hands and jaw clenched so tightly he thought I was going to break a bone. In the ambulance I had to be given a huge dose of Keppra and Ativan to stop convulsing. I slept in the hospital for 36 straight hours. MRI and EEG showed nothing out of the ordinary, once again. The after effects of these multiple seizures are having a significantly negative effect on my life. I have completely withdrawn from any and all social activities and stay anxious even when at home. I have chronic partial simples at home on a daily basis, at least that's what I believe they are. I feel lightheaded and dizzy constantly when not sitting down, and even when sitting sometimes. It has become tough to watch tv, look at my phone or any other type of screen, or even read a book due to dizziness. This dizziness does not happen every single day, as I'm sure you all know there are good days and bad days, but when it does it is difficult to overcome.

I guess I'm asking if anyone else has had anything similar happen? Especially the after effects (anxiety mainly).

I joined this site to hopefully learn more about my condition and to use my knowledge to help others.

One last thing though...I am a very positive person and rarely talk about these negative side effects with my friends or family, so don't think I'm always going to be negative and on the 'dark side' per say on this site :)
 
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"I am a very positive person and rarely talk about these negative side effects with my friends or family, so don't think I'm always going to be negative and on the 'dark side' per say on this site " that is good because you have to try and stay positive even when its getting you down, the positive here is looking forward to good time. It sounds like you decided that epilepsy and all that goes with it decides what you can and cannot do, epilepsy and all its side effects do not and does not or will ever rule your life or decide what you are capable of doing only you can decide. At some stage we have all gone through this or something like it and no it is not easy deal with.
 
It's a shame you quit your job. Is there anyway they would rehire you?
Then if they fire you may have them. There are laws against discriminating against disabled people.
 
Hi Darth,

Welcome to CWE! I've had epilepsy for 45 yrs. I've had absence and complex partial seizures most of my life. I did have surgery to help reduce my seizure.
Before the surgery I would often feel depressed and get dizzy my neurosurgeon told me this was all part of my epilepsy.
It sounds like you may be having "seasonal seizures" which means at certain times of the yr. a person will have more seizures. I have more seizures in the fall and winter compared to the spring and summer just like you and my Epileptologist told all of that is happening because in the winter months there's a lack of serotonin this time of the yr. compared to spring and summer so I started sitting around bright lights and that has helped me a little.
You also may be "photosensitive" which means certain colors or flashing lights can trigger seizures, I had this problem and my Epileptologist did a special e.e.g. on me and had the tech flash different color strobe lights one at a time and they found that the colors amber, florescent green and bright white like the sun shining on the snow triggered seizures for me. Also sometimes a person has what is called "reading seizures" and that happens when a person is reading the paper or a book.
I'm sorry you had to leave your job, I was asked to leave my job in the public school I work at but I fought the administrators and I've now been there for 32 yrs. I found keeping myself busy helped me a lot so I have less time on my hands to think about negative things.
One thing you may want to do if you haven't yet is start seeing an Epileptologist at a Epilepsy Center, you can have your family Dr. refer you to see one. I saw many neuros over the yrs. but when I started seeing an Epileptologist the Dr. was able to find the cause of my seizure, and keep me on the least amount of meds. Right now I'm using cbd (med. marijuana) and I'm amazed at how that's reduced my seizures.
Be sure to cut back on the carbs and starch foods and get a calendar and keep track of all of your seizures. Write down what time they happen along with the type of seizure you have by doing this it may help your Dr. see a pattern in your seizures. This is how my Dr. found out I was having seasonal seizures. Stay away from anything with NutraSweet in it because NutraSweet can sometimes trigger seizures for some people because it causes more electrical activity in the brain. Sorry for chatting so much! I wish you the best of luck and May God Bless You!

Sue
 
Hey Darth Cajun, welcome to CWE!

Feel free to vent about the "dark side" here at CWE. Just getting it of your head and on paper (or onscreen) can help. And we have a "Padded Room" forum for just that purpose.

Big ol' seizures can certainly cause anxiety and depression. Partly it's just the result of the physical and emotional exhaustion along with the way that seizures can negatively affect our quality of life and social interactions in particular. Seizures can also cause anxiety if they occur in the parts of the brain that regulate emotions (such as the frontal and temporal lobes). And then there's the ways that anti-seizure drugs can mess with moods too...

If you can, I recommend that you seek out group activities (such as meditation or yoga) that can help relieve your stress and potentially lower your anxiety levels. Connecting with others online and in person can be a great way to get perspective and support, especially when we are feeling low.
 
Thank all of you for the responses. I have started yoga and it helps immensely. I've always read that it's not just for your body but for your mind as well, and that's so true. Thank you all once again.
 
Hello & welcome, Darth. I've basically had epilepsy since childhood, but it was not diagnosed until I had 3 or 4 tonic clonics in 1987. I often complained of weird feelings in my head when I was a kid--an EEG after those seizures helped the neuros recognize them as simple partials. About 18 years ago, I suddenly began having complex partials.
The complex partials started at a horrible time. I had finished my B.S. degree w/a double major less than 2 years earlier. These seizures preventing me from using the degree I worked so hard for is one thing that I especially hate.
 
Darth Cajun,
My heart goes out to you!! Wow I couldn't handle all of that. You must have amazing strength and it's so great to reach out this way! So my first question is do you have an epileptologist? It all started to get better when I switched to a specialist. Have you had a video EEG? I did and it changed things. I found a new medication that works. No wonder you have anxiety and depression which could be caused by seizure activity, these things run hand in hand I was told. Finally found this doctor who said I needed two mood stabilizers Depakote for seizures and mood and Carbatrol does the same and the antidepressant thrown in for good measure.

If you are dizzy, which was happening to me, they said it was seizure stuff going on. Once the meds were corrected it stopped. I have a Vagal nerve stimulator and I'm on two meds. Depakote and Carbatrol two strengths of each. I've had this since age 12 and I'm 56 now. I see a doctor at Rush in Chicago and take a train 2.5 to get there. My doctor said we want NO seizures so if you are sitting at home feeling those sensations they can and will lead to bigger seizures. I don't know if you are taking medication as you didn't say. Feel free to ask me any questions. Wish you the best of luck. Jeanne
 
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