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.

Wetting Myself

There many things that I  lose cotrol of during a seizure. One thing that happens to me a lot is I end up wetting myself, I do of course wear adult diapers to aviod embarrassment. I have had so many problems with seizures that I have become regularly incontinent, that means I wet myself even without having a seizure.

With my incontinence it hase become rather expensive. I use about 2 cases of 80 diapers a month. That is not includig wipes creams and pouders. The only time I save mony is when I find diapers at thrift stores.


Wearing in public can sometimes be a  problem. Carrying an extra bag for my diapers, or wearing a diaper in the airport. Most of the time it is hard to hide the fact that I am wearing, or wet. Changing a wet diaper is a big hassle in a public restroom. Most of the time I have to use the large handcap stall to have enough room to change.

It is really hard to tell the hospital that I wear a diaper. They see these types of things all the time, but it is still hard for me to tell them that I need a change, or that I'm wet. 

I do have a lot of challenges being incontinent on a daily basis. I just wanted to write and share my own personal experience

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.

If this article has been helpful please share and like. Please Subscibe for more blog content.

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.

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.

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.

Adult Diaper Review: Prevail Perfit Cloth Backed

I just got this brief today and I must say it is the most comfortable diaper I have tried yet. I wore it for an entire night and had no problems with it moving or coming undone like most diapers I have tried. The diaper is cloth backed and not plastic like some of the other Prevail products I have used. here is some of the feature of this product.

1. Easy - Lock Fastener (ELF) Reataching fasteners securely grip and hold without being sticky.
2. Maximized breathable zones.
3. Targeted aquisition zone with blue stay-dry strip.
4. Fecal containment zone.
5. Odor Guard Protection helps prevent odors before they even start.

I highly recomend this product. I like this diaper very much.

Visit Med Street on Ebay for all your incontinence needs

Adult Diapering (Comfort vs Value)

My monthly diaper stash

When it comes to adult diapers everyone is looking for something different. For some people it's comfort that is the most important and for others it's price and value, it's almost impossible to get both.
No matter what your looking for adult diapers are expensive even if you save a buck or two. There are other factors to concider, how many diapers do you use per day. For me I go thru about 6-8 diapers a day. At first comfort used to be imortant to me but now that I've been in diapers for some time now value and price have been more important. I get my diapers from multipal sources solme from Ebay, Some from discount diaper sites, but the best deals I've found is from Goodwill Stores on 50% off days. Now when I go to Goodwill a pack of diapers is $6.00 but on 50% off  day you get them for $3.00 a pack. Each pack has 18 diapers  that means if you buy 4 packs you just baught a case of 72 diapers for $12.00 and normaly a case of 72 costs about $56.95 online. Now I will confess that if I have extra money I will pay for comfort, my diaper of choice for comfort is Tena Ultra I pay $68.00 for a case of 80 diapers and I buy two cases normaly. So now you can see there is a big differance between confort and value but whatever way you want it it's still expensive.

Product Review: Attends Breathable Briefs

There is a new product that I tried and here is the review. I this is a great diaper for those with heavy incotenance. This adult brief is great because it does not feal like other briefs that cause you to swet a chafe between the legs. This brief is breathable because it is made of soft material instead of unconfortable pastic.

Features include.

Contains additional super absorbent polymer and cellulose fibers for maximum absorbency

Triple-tier moisture locking system delivers superior performance and leakage protection while promoting skin wellness and managing odor

I love this product because it is super obsorbant 

and it helps you last through the night and helps 

you stay dry all night long.

I highly recomend this product to anyone needing 

incontent products.

This is a great value for a great product.

(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.

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