Dealing with Seizure & Vocal Tic Disorder

Everyone who knows me has known about my struggle with Leukodystrophy and Seizures. But for the past three months, I have been dealing with vocal tics. Having both Vocal Tic Disorder plus Seizures have been a challenge for me to deal with. Sometime I will have tic attacks leading into a seizure, which can take a major toll on my body.  

When People Stare

  People have always looked and stared at me because of my seizure helmet, but now when I have my vocal tics even more people look and think there is something wrong with me. Some of them walk away like they are scared to be around me. 

Loud

  Sometimes my vocal tics can be really loud. At times they can be small and quiet as well. I wish I could keep them under control. I have had a total tic meltdown in the middle of Wal-Mart at one time.

Sleepy

After having tics all day most of the time it will leave me feeling tired and sleepy. Sometimes I will have high blood pressure after a major tic attack. The last time this happened I was forced to take five days off from work. 

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.

Hard Shell Seizure Helmet

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.

(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.

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.

    

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.

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.

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.