One question that a lot of people ask. Is it normal for adults with epilepsy to wear diapers. The answer is that it is a matter of preference if the person with epileptic incontinance feels it is necessary for them to wear an adult diaper. Some people are OK with wearing them, while others are turned off by the idea. When I started having problems with incontinence it was a very hard transition because in my mind I thaught only babies and old people wear them. One day I had an acident after having a seizure in public, I wet myself and it was an embaressing moment in my life. All I knew is that I never wanted that to ever happen again. In my opinion, it is better to wear an adult diaper then it is to have an embaressing acident in public. If this article has been helpful please share and like. Please Subscibe for more blog content.
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.
(Eletctric Magnetic Feilds) EMF is everywhere from cell towers to cell phones, even your computer and wireless routers, basically anything powered by a large amount of electricity. High EMF can have a huge and dangerous impact on the brain especially someone like myself, simply because I have epilepsy. I have really noticed EMF sensitivity at my workplace because there is a lot of computer monitors and electrical equipment for preparing the food.
This is especially bothersome with my VNS (vangus nerve stimulator) when I go to work it feels like I'm constantly using the VNS magnet over and over again. I will say that high EMF sensitivity has never been a factor or problem for me until I had the VNS implant. Even for people without epilepsy EMF sensitivity can cause a variety of other problems, Headaches, Migraines, Irritability, behavior disorders, Insomnia, ADHD, Alzheimers
Parkinson's
Stroke, Seizures, Nerve and/or muscle pain
Fibromyalgia, Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), Multiple Sclerosis, Tumors, cancer, Heart attacks, and cardiac arrhythmias.
Almost every day I am feeling tired worn out and burned out. Sometimes I feel like I might start having seizures or have a relapse. I have been trying to get somewhere back to a normal state. Maybe I have been pushing myself to hard, I'm not really sure. Between working, meds, and VNS stimulation, I find myself out of order. One thing I do know is that it's taken me this long to get this far, so there is no turning back. I just have to keep moving forward, and I will eventualy get there. If things don't work out at least I tryed.
Recently because of dizzy spells and blackouts I have to use a Rollator Walker. I mostly use it when I go shopping, Church, and when I go for a walk. I love the fact that it has a seat, I can sit down on the seat and rest, that is why I asked for it. Because of my lightheadedness and dizzy spells I can't walk for far distances. Like I have said Leukodistrophy has started to take it's toll on my body. I have seen others with my disease in wheelchairs but that is something I want to aviod. I still want to be able to walk as long as possible. Difficult things for me to deal with having a walker are getting in the refreshment line after Church. Also at my age of only 37 alot of people stare at me when I go to the store. As things start to progress even though I get the looks and stares I'm still greatful that I can still get around even if it is with my walker.
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.
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.
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 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.
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.
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.
One thing I know from being an epileptic for so many years is that visits to doctors and specialists can be very costly, ever after insurance. Just for a MRI is about $500.00 after medical insurance pays. With epilepsy it seems like a never ending cycle. My VNS alone is about a $50,000.00 procedure, my insurance pays all but 2,000.00 and that doesn't include the turning on of the device and the adjustment appointments witch I have about every two weeks until my VNS is adjusted correctly. Since my surgery I have racked up an estimated $4,000.00 in medical expenses. On top of that my medication that I have to take. It is very hard for me to make it on a fixed income as an epileptic.I myself have tried to start working from home but to no success. I have and online T-Shirt Shop my sales have been slim to none. My wife works but I want to contribute to my families finances and do my part. I would go back to my old job but the amount of seizures I'm still having won't allow me to. One other thing that is quite costly is my medical supplies such as my adult diapers due to my incontinence. So you see there are a lot of expenses when it comes to epilepsy.
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.
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