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.

Why Some Epileptics (ABDL) Age Play

   Some people don't why some of us like to age play. For a lot of people it's never for the same reason. Some ABDL's do it for stress relief, or some just miss that sense of reliving there childhood.
   

There is another group of people I want to talk about to today, something I don't think people know exists. People like myself, a person with epilepsy. Someone reading this may say this is ridiculous, but it's not a crazy as you may think.
I have many reasons that I age play, one of these reasons is my struggles with urinary incontinence.
Because of this I have to wear adult diapers, but this is not something to easily accept. To help myself accept this I have started to age play with baby toys, adult baby clothing, and ABDL clothing. With this new change in my life I have been a calmer person, have had less seizures, and I have felt more confident in my need for adult diapers.
    There are sopme people who may be angry or upset with this article. Some who my say, I have epilepsy and I don't wear diapers and act like a baby. To those people I would like to say, all of us who deal with this are different. Also we all have different things going on with our health and how we choose to deal with our problems is different as well.

Epilepsy & Wearing Diapers

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.

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Diaper Review: Rearz Spoiled

This is one of my all time favorite diapers thus far. This diaper is a play diaper for ABDL, and for those who are into age play. It is a very comfortable fit, for the money you spend on it. The diaper is very thick, and holds a lot, it also does not leak. The longest I have worn this diaper is about 10 hours. I have had no problems keeping mioster away from my skin I was still very dry after use of this diaper.

Features

1. Brand name 4th Generation SAP gel:

• This crazy gel has a 4x faster acquisition rate
• Better retaining power - even under pressure!
• Higher capacity
• This ingenious polymer also swells more than the cheap gel that ALL our competition uses 
• Why don't ANY other manufacturers use this gel?  It costs 3x more money so they can have a higher profit margin.  We don't care about anything other than the BEST QUALITY materials available.

2. Boasting a 4900ml capacity (yes that is 169oz/20 cups)

3. Brand name tapes

4. Soft and generous core with USA grade A Fluff to prevent shifting when wet

5. Tall standing leg guards

6. Elastic waistbands front and pack

7. Adorable print

8. Reinforced frontal tape that allows refastening

9. Thick Vintage style PE backing that has not been seen in at least 20 years

Sizing

As a genaral note these run larger than "standard" sizing, closer to the sizing of Abena.

Size 9 (Medium): fits 32" to 42" with 3" of overlap on each side

Size 10 (Large): fits to 52" with 3" of overlap on each side

If you think you might want to try this diaper visit the link Here

Need For A Hard Shell Seizure Helmet

    Most of you who come here and read my blog  know that I have seizures. The cost of me trying to keep myself healthy and safe can be rather expensive. Well just last week I passed out at Walmart and had a seizure I woke up later and the manager was standing over me and told me not to move and that I had a seizure. Thank God I had my foam rubber helmet on. I did however drift in and out of consciousness. The next day I had extreme headaches. 

   Now that I'm 40 I find that I have a need to be safer and protect myself fom injury. I have been wanting for some time to have a hard shell helmet, I believe that it is much more durable and will protect my head better than a foam rubber helmmet. I have beenn looking and pricing them out and the one I need with all the options I want the cost is around $470.00 and that includes shipping. I am in desperate need to be safe, I have set up a GoFundMe page for anyone who would like to help me. If I can I will try to keep everyone updated on how much money I have raised.

(Electric Magnetic Feilds) EMF Sensitivity on the Brain

(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.

Feeling Burned Out

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.

Exorcise and Epilepsy

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).

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.

Using A Rollator Walker

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.

      

Having A Seizure In Public

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.

Things to Concider Before Getting VNS

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.

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.

Seizures In The Parietal Lobe

I just recieved my results from the MRI I had done before my surgery. The resultls said that I have mass loss in the Parietal Lobe as well as the Frontal Lobe of my brain. Now the research I was really Interested in doing was on seizures coming from the Parietal Lobe of the brain because this is wear most of my seizures are coming from according to the report from the MRI.

Here is some information I found from a site when researching.


What is Parietal Lobe Epilepsy? Parietal lobe epilepsy is a relatively rare form of epilepsy, comprising about 5% of all epilepsy, in which seizures arise from the parietal lobe of the brain. Parietal lobe epilepsy can start at any age and occurs in both males and females equally. It may be a result of head trauma, birth difficulties, stroke, or tumor, though the cause is unknown in 20% of patients. 
 Where is the Parietal Lobe Located in the Brain? The parietal lobe is located just behind the frontal lobe and it plays important roles in touch perception, the integration of sensory information and in visual perception of spatial relationships among objects (visuospatial processing). In the language dominant side of the brain (the left side for most right-handed individuals), the parietal lobe is also involved with language, planned movements such as writing, as well as mathematical skills. What are Parietal Lobe Seizures Like? Since the parietal lobe involves the processing and integration of sensory and visual perception, seizures originating from the parietal lobe can involve both sensory and visual sensations. Seizure duration varies, from a few seconds in some patients to a few minutes in others. The following are the different types of symptoms associated with parietal lobe seizures: Read the rest of the article HERE to find out more.

One other thing I did learn from researching other sites is that if damage is sustained to the Parietal Lobe, a person would most likely have difficulty reading, recognizing people and objects, and having a comprehensive awareness of his or her own body and limbs and their positioning in space. For those with traumatic brain injuries to this area, the ability to multi-task is reduced or eliminated, as is mathematical ability and recognition of the difference between right and left. To research more on this please read the article HERE. 

Now some (but not all) of these sympoms I have begon to experiace lately. But not to worry, I'm just writing this article for the purpose of edgucation.
I do however encourage you to do your on independant research for yourself. I am not a doctor nor do I claim to be one.

I hope this article is helpful. Please share this if you would like.

Epileptics 4 Christ

Hello it's brother John once again with another post. I just wanted to share something with my readers. Some of you who actually know me know that I am a Christian. Well anyways I had a vision from God to start group to outreach to Christians who have epilepsy both online and off. For fellow ship and prayer and also to outreach to those who don't know Christ. I also wan't to start a publication news letter from people who have epilepsy to others who have epilepsy to help give comfort to those suffering from the disease as well as sharing the gospel. Besides having epilepsy I am a very strong believer in the Gospel of Christ. My Lord and Savior Jesus is the only reason that I'm here today. With the form of epilepsy I have I'm not even supposed to be here, believe it or not I should be dead. That is why God has called me to write this blog, and to start this outreach.

  If anybody is interested in helping with this outreach please e-mail me brotherjohnspeaks@gmail.com please use the subject Epileptics 4 Christ

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.      

Gaming and Seizures

One thing that I have found out during my time being and epileptic is that playing video games during a long period of  time can cause seizures. The flashing lights and bright colors can cause over stimulation in the brain causing a seizure.There are however  ways to prevent seizures during game play, one thing I have found is things to do during game play to prevent seizure activity is to limit your game play time. Don't play any games with flashing or  bright lights. One other thing I have heard is that wearing sunglasses are a good idea during game play. Not everyone has this problem with seizures during gaming. So my  advice to you is be very careful if you have epilepsy and play video games. If you do have seizures don't play games by yourself. Always have someone around just in case of an emergency.

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.