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.
For a bigger part of mylife I've had to wear a seizure helmet. Since 2009 I have baught about five different helmets including the most recent one that I have now. Most of the ones before were foam rubber or leather. The most recent one is a hard shell helmet with a foam rubber liner on the inside with hard shell ear covers.
The reason for the hard shell up grade was because aboutt a month a go I was shopping a Wal-Mart when all of the sudden I passed out on the floor. The next thing I knew was that I was waking up with a manager telling me that I had a seizure. He told me that I had fallen pretty hard, and man did I feel it the next couple of days. The next couple of weeks I was to scared to go anywhere by myself . This is when I decided to try and upgrade to a hard shell helmet. My reasoning was that this would be more durable, and it would make me feel more safe. I will begin to tell you that seizure helmets are not cheap. This particular helmet cost me about $470 thats including the shipping cost. Being someone who works in fast food, this was not easy to come up with the money. On the news I saw stories of how some people were able to get help using croudfunding services. One particularly was GoFundMe, so thats what I did I set up a page and in about a month I was able to get my helmet. I am so thankful that a lot of my friends and family could help me raise the money for my helmet. Now my brain feels a lot safer because of it.
Some people with epilepsy avoid exercise because they are afraid they will have a seizure during the activity. In fact, it is extremely rare for a person to have a seizure while exercising. Rather than triggering seizures, their epilepsy may improve with exercise. Although the reasons are unclear, studies demonstrate that abnormalities on EEG (a test that measures electrical activity of the brain) decrease during exercise.
Overall fitness and a feeling of well being have been shown to help reduce seizure frequency. People feel better and may improve their seizure control with regular exercise. One report suggests that exercise improves self-esteem and social integration, regardless of seizure control. It has also been shown that regular exercise reduces the number of overall health complaints, such as muscle pains, sleep problems, depression and fatigue.
Most sports activities are acceptable as long as people avoid overexertion, dehydration and hypoglycaemia (low blood sugar). If seizures occur, it is most likely after the exercise (15 minutes to three hours after exercise).
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.
Having seizures in a public place can be embarassing as I have found out just a few days ago. I was shopping with my wife when all of the sudden I had a small seizure in the checkout line at a thrift store. I am so glad that I was not alone that day simply because there is not a lot of people who know what to do in these situations. To all those who have epilepsy, I would say that if you have severe seizure activity, don't go anywhere alone. I myself already stay home alone everyday and still I don't feel safe. So I know not to go anywhere alone.
Today I want to share some thing you should concider before you decide to ge a VNS implant. The reason for this post is because when I heard about this amazing technology I want to get this procedure done right away. I did not way the pros and cons of the recovery process. Now you might be asking, John do you have any regrets? I would have to say no, I have a lot less seizures than I did before. I used to have about 25 -50 seizures a week now I only have about 5-10 a month wich is great.
There has been things I have to endure on my way to this piont.
So here is a list of things to cocider before making that choice to get VNS.
1. Pain for about two weeks at the incision pionts
2. Stinging sensation wnen divice is first turned on.
3. Horseness of vioce and shortness of breath depending on divice settings
4. High amounts of electric stimulation everytime the impulse generator is turned up by your doctor.
(this may be painful depending on the settings)
5. Your doctor may have to up the dose of stimulation according to the amount of seizure activity. The more seizures you are having the higher the amount of electric stimulation.
There are others factors besides these ask your doctor for free DVD and Guide about VNS.
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.
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.
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.
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.
I just had my VNS turned on yesterday, I will tell you it's no picnic.When the generator was turned on right away I felt a jolt of electricity go up my neck and into my brain. I would have to say that I'm glad that I was sitting down because it was intense enough to knock me down. Other things I have experienced have been shortness of breath, dizziness when standing, feeling lightheaded, and sore throat. When I use the magnet the intensity is about double or triple of normal stimulation. When I went to sleep last night I woke up with a choking sensation in my throat. After waking up this morning I still felt very tired. Today I have already had two seizures, so I'm thinking that when I see the doctor in two weeks that he may have to raise the dose of electric stimulation.
I have also decided to put the helmet back on because of the breakthrough seizures that are happening. One day hope to permanently rid myself of the helmet, but now I feel it's the right thing to do right now for my personal safety.
I would like to say to those considering having a VNS implant that not everybody has bad experiences. I know some other people who I have met, that have had great results with the implant. These are just my personal experiences, and I'm only two days into this. I'm very sure that things could get better as I go along with this process. I'm just sharing this for those who may be considering getting this procedure. So you may have some things to think about before making a decision on if you would like to have VNS Therapy.
This article is about a medical procedure I recently had done. (VNS) wich stands for Vagus Nerve Stimulation, it consists of a small pacemaker like generator with a lead wire that attaches to the left Vagus Nerve. When activated it sends pulses of electricity to the brain to help stop seizure activity in the brain. I have recently had my surgery, so I haven't had mine turned on yet. One thing I have to say so far is that after the surgery the first couple of days was hell. I had a lot of neck pain. I'm really looking forward to see what happens when the doctor turns it on.
This is a video of me after surgery. In further articles I will keep you updated so please stay tuned to my blog.
