Causing my own seizures, banging my head against the wall.

   I do have Epilepsy, but sometimes I am so frustated with my life that I will go into a state of depression and hit myself in the head causing even more Seizures. I want to share this because there are so many people out there who deal with Epilepsy with Depression togrether. Even though I have a great support system, I still have times I have a sence of worthlessness. I think one of the things that make me feel this way is because even though I have different treament options such as VNS and medication, I feal slowed down and not being able to keep up with the world around me.

 This is the first time I have talked about this in my blog, simply because of what people might think or say. The only reason I am sharing this now is because I know that know that there are others out there who may have the same problem.

   Other ways that I have cause my own seisures include, dinking with medication, staring at the wall, and watching strobe videos on YouTube. 

  Well I hope my honesty has helped those reading. If you struggle with the same thing please comment and share bellow.

My Bucket List

One thing that I have been thinking about as my life goes on is things I want to do bwfore I get to old, or before my condition gets to bad. I have been making a list of things goals in lfe that I want to accomplish in my life as well as places that I would like to go. Life is to short and we should do everythingf we can to live our dreams no matter how old or how old we are, and no matter what obstacles are put in our way. 

I have my own list that I want to share, I will be working as hard as I can to check some of these of soon.

• 1 Go to Wrestlemania
• 2 Visit another country
• 3 Make a film about Epilepsy
• 4 Earn a YouTube Silver and Gold Play Button
• 5 Take my family on cool vacations
• 6 Help young people, who strugle with depression, and substance abuse.
• 7 Go to VidCon
• 8 Have a meet up to meet some of my subscribers.
• 9 Visit NYC and see the 9/11 memorial

   There are probably a bunch of other things I can add to my list that I haven't thaught of yet. My piont is this, do as munch as you can while your here, because if you sit around, life might just pass you bye.

Special Needs @ Allegro Medical

Being an epileptic there are things I need in the form of medical supplies. The one place I trust for theses needs is Allegro Medical. They have the best prices on everything from walkers to shower safty seats, to adult diapers.  Anything that a person with any type of dissability might need. The difference between Allegro and other suppliers is that Allegro's prices have a lower markdown below normal retail (about 30-60%). So you are garenteed to pay less than any other Medical Supplier online. Allegro Medical is where I purchase all my adult diapers, adult bibs, and all my other medical supply needs. I have not found any other better prices than I have at Allegro Medical.

Part Time Work and Epilepsy

One thing I have been worried about these last few months since my VNS surgery is going back to work part time. Before the implantation of my VNS I was having lots of seizures, even afterwards I was still having seizures at a regular pace while my  VNS was being ajusted. Finaly I have come to a point to where I haven't had any seizures in a while. Finaly aafter all the waitihg at home I decided to go bact to my old work place and see if I could have my old job back, and fortunantly for me I will be going back to work soon. 

  There is one thing however I am concerned about and that is how my body will react to me working again since I have not been working since July of 2012. I have notice at home after working around the house I get burned out after about 4-5 hours. I think it is do to the medication and the high amount of electrical stimulation from the VNS. I guess I will have to take it slow for the first few weeks.

Progression of My Leukodystrophy

Since the day of my surgery I have seen things get better for a while, then get worse. A kind of back and forth kind of progression. I have Leukodystrophy, and it's kind of a progessive disease that gets worse with age. Leukodystrophy is a diterieration of the Myelin Sheath or (white matter) in the brain. Myelin is the protective coat over the nerves in the brain, kind of like the plastic protection on an electrical cord. 

People with this disorder experience

• Balance / equilibriun problems
• Shaking (ataxia)
• Seizures
• Problems with motor abilities (walking running)
• Probems with itellectual abilities (comprehension, memory, behavior)
• Sensory problems (seeing hearing etc.)

With my VNS (Vagus Nerve Stimulator) I don't believe that this is a cure for my Leukodystrophy.

I have read from other people that they have had there loved ones have VNS to help control the seizures.

This does not stop the fact that the Myelin Sheath (white matter) in the brain is still in deterieration. So it is not my opinion that VNS will stop or control any of the other simptoms listed above. The reason for this is because I have begone to experience some of the other simptoms of this disease and it will only get worse as I get older.

    

Epilepsy and Every Day Struggles

With epilepsy I struggle every day, even after my VNS surgery. I still have seizures almost every three to five days. Now that I have the VNS the electric shock is juiced up very high leaving me burned out and tired. I am still having problems with incontinence, I go through about 4-5 adult diapers a day. Plus when I go to sleep at night I wake up wet in the morning. I because of this I have had to ask for help for my icontinence products from medicare and medicade. This has been very helpful. Even though I have the VNS I am still on a lot of medication, this may be a contributing factor to my sleepyness and my depression. Another thing I hate is being home alone while my wife is at work and my so is at work. This doe not make me feel very safe, and at times I feel very lonely. In the last five weeks I have had 16 seizures. Right now my neurologist has my VNS implant adjusted to 1.2 volts wich is low dose of stimulation, but for me it is very painful. The highest dose is 5.1 volts  wich I hope I don't have to go that high because this is already to painful for me. I know I will have to endour some things to get this adjusted right, it's just a long road to recovery for me.

Electric Brain Shock

Well it's been about three months now since my VNS surgery. I have had three  adjustments to my implant for the stimulation. With each time I go the electric stimulation seems more and more intense. I am really hoping that they get the dose to where it needs to be soon. I was just in the ER for seizures this last weekend and today I had to go back for another adjustment. This time the stimulation was so strong it literally floored me. Later on I had to use the magnet to stop a seizure and it felt like my brain was being completely electrocuted and cooked inside my head.  I almost wanted to cry it was that bad. I have felt tired and dizzy all day. Now the maximum level of stimulation is about 5 and I'm not even there yet. I'm only at about 2.5 and it's almost unbearable now. Now because the seizure activity I am wearing the helmet again.

Living Day to Day with Epilepsy

Living with epilepsy has been quite a challenge for me simply because every day is never the same. I never know if I'm gonna have a good day or a bad day, or if I'm gonna have 1 seizure or 20 seizures in a day. I have days when I feel great and other days when I feel crappy, every day is different. 

  There are several things I deal with on a daily basis. I have a VNS implant that sends an electrical current to my brain every five minutes. My sleeping patterns are all messed up so sometimes I get up on time or sometimes I sleep all day. A lot of times I have seizures during sleep, so when I get up in the morning I feel dizzy and disoriented. Because I have had so much seizure activity for so many years, my nerves are all messed up and I have urinary incontinence. Every day I have to wear adult diapers, I have to change them about  once every 
2-3 hours a day.

    I really enjoy the good days. On good days I clean house, do a little reading from my Bible, and take a long walk with my dog.
   
Epilepsy is a struggle, but I just try to take everything one day at a time.

      

The Scars Left Behind

Scar on my chest from VNS surgery

One thing a person must consider when getting any kind of surgery for epilepsy is scars weather it be brain surgery or VNS. Once you've had a procedure   

Neck scar after VNS surgery

done your stuck with not only the physical scars but also the scars of the outcome results. I will tell you that in my opinion there is no cure for epilepsy or any other seizure disorder. These types of procedures just makes it easier for people with seizures to make it through life. I had the VNS implant  surgery just this year, and my experience has been that I have less seizures, but I do feel burned out and tiered from the stimulation. So even though my seizures are less frequent I still have to deal with a few seizures still and fatigue from the stimulation of the VNS. So sometimes I wounder if this was worth the physical scars left behind on my chest and neck. I've only had this device  for about a mounth or two so only time will tell.      

Even if you have epilepsy.

I have had epilepsy all my life, ever since birth, and ever since then even though I have struggled, I have never let anyone tell me that I can't do what my heart desires. That is the topic of this article, that even if you have epilepsy you can still do it. There are many things I have accomplished in my life that I would like to share with you. I am 37 years old, I am a husband, and a father. I am well respected by my family, friends and others who know me. Things I am very good at are writing, blogging, and short film making on YouTube. I also have Pastors certificate and License to Preach after taking an online course a few years ago.

  Well I'm not trying to gloat about myself, just trying to show that just because you have a disability it doesn't mean you can't do anything with your life. Plus I know that there are other, that think epileptics are helpless, wich is far from the truth. I had a friend in High School who had seizures really bad, she was in a wheel chair, and even though she had the option to stay home because she was so bad, she came to School every day and even graduated with honors. Unfortunately about a year or two later she passed away, but she never let her condition control her life. 

   Just to end this article I just want to say that I hope this has encouraged those who have epilepsy, and I also hope this has opened the eyes of those who may think that epileptics, and others with disabilities are helpless because we are not. It may take us more time to accomplish tasks, but overall we can still do it.

(VNS) A Long Recovery

Recovering from my VNS procedure has been a lone and hard road. At first when the device was turned on it didn't bother me that much. The stimulation was at a minimum level that I could tolerate.

  Unfortunately I was still having a lot of seizures. So when I went back to see the doctor recently, he had to up the dose of stimulation. 

I have recently been suffering from dizziness, disorientation, feeling lightheaded, shortness of breath, hoarseness of voice, and more seizures.

  I'm not saying just yet that the VNS is not effective. I'm just saying that there is a long time to recover from the surgery, and all the adjustments from the device. I am very sure that everything will work out in the end.
   I am just writing this article so epileptics who want this procedure will know what to expect. So far there has been a lot of pain with the healing, and a lot of dizziness with the adjustments of the VNS device.

      

Epilepsy & Depression

   One thing I have struggled with most of my life even with epilepsy is depression. Even though I know God will take care of me depression is a constant struggle. I know that I'm not the only one, there are many epileptics that have depression. This is a very common thing for people with epilepsy. See full article here on Epilepsy.com

   I will tell you of an experience that I had about four years ago. One day I was home alone and I was feeling very depressed. I decided at that I would try and end my life. My wife came home that day and saw me laying on the floor with a plastic bag over my head. After that I was rushed to the hospital, the later put into a mental hospital for about a week.

  Later that summer I found a Church that I started attending. It was great to have support of other believers. That year I started a YouTube Channel preaching the gospel of Jesus Christ. Just this year I started another Channel reaching out to those who have epilepsy, and also creating awareness to those who don't understand what epileptics go through every day. 

  I also blog as well.
I still have depression, but blogging and making videos keeps my mind off of it.
It's good to have something to do, weather it be a hobby or other things.

  One thing I have found is that through writing and helping others, helps me through my depression.