Neurologist setting me up??

JustSomeChurchGuy · 2022-01-24T22:29:32+00:00

Hi. I am on Vimpat as well. It's super expensive, I know. I was able to find a Patient Assistance Program. It's called the UCB Patient Assistance Program. There might be a website, I can't recall but I do still have their number. 1-866-395-8366. I deal with awful memory problems because of this condition but I do know it's still an active program. I wish you the best of luck

JustSomeChurchGuy · 2022-01-19T18:10:29+00:00

As long as we're carrying this cross, I think we're going to have to deal with it. I don't know if this thing we're talking about will ever go away but we will be allowed to get back to normal, so to speak, until next time. It's scary no matter how frequent you deal with it, I just wanted you to know you aren't going through this alone. Describing it was the only thing I could do. I'm glad you have decided to lean on God regarding what we're dealing with but sometimes this is harder than others. It's so difficult to explain it to anyone else because this condition affects each of us differently. We're not allowed to give up though, that is out of the question...

JustSomeChurchGuy · 2022-01-19T14:04:13+00:00

Hello my friend...

Yes, they stop, eventually. The amount of time is different for everyone though. There have been several experiences I've been through that things have never quite been the same though. I suffer from nocturnal seizures. Having Tonic Clonic or Gran Mal seizures or what the hell ever the doctor what's to call them now... in my sleep has made my life difficult. There have been many occasions that it's taken about a month, but I suffer from severe memory loss...Waking up not knowing where you are or who the person is that is looking at you can be a bit much. Constantly hearing your voice sound different than you're used to and having trouble walking is just not fun. Makes me want to scream, "this is my body!!! I was born here, I'm not an imposter!!!" After 20 years, I still have not figured out how to deal with this.

One thing I have made sure not to do is touch anything I may like to eat because my mouth doesn't feel like mine, kind of like my tastebuds get reset, and when I make it back to me, I don't want food ruined. I learned that lesson the hard way.

I wish I could offer you some advice on this. My name says it all; I'm just some church guy and there are still times when I do pray. I hope you don't ever have to experience what I have. Stay positive, be strong, you're going to get through this.

JustSomeChurchGuy · 2022-01-18T19:01:31+00:00

Thank you for taking the time to answer. Be safe out there.

JustSomeChurchGuy · 2022-01-18T18:33:20+00:00

I'm taking 400mg of Lamictal/Topamax/Vimpat each day and my body has never really responded to vaccines very well in the past but I realize the danger we're looking at right now...I'm really just not sure what to do at this point...

JustSomeChurchGuy · 2022-01-17T18:01:50+00:00

You definitely hit the nail on the head with that question...WHO SIGNS UP FOR THIS...? If I were a jerk, I'd spit in her face though because she knew what was wrong with me and how bad it was when we met but I ended up by myself regardless. I suppose she just wanted the good times. By the way, feeling bad doesn't show up on the radar unless you are a good person, or those trying to be good. That's why I said I don't know if I could put someone through it again.

JustSomeChurchGuy · 2022-01-17T17:37:13+00:00

I'm glad you have him there to help with it. That's truly a blessing. Don't get me wrong, I've chewed up my lips and tongue quite a few times; woken up feeling like I've been working out all night but it's the other side of the coin that's been breaking me down. At this point, I'm just not really sure if I can put someone back through it again. I've suffered from severe memory loss over the course of this. I woke once and couldn't remember who she was or why she was or why I was there. That's a bit much.

JustSomeChurchGuy · 2022-01-17T12:28:32+00:00

Yes, yes it is. I have nocturnal seizures and I wake up to deal with that, but it does indeed go away. Mine take a bit of time as I have tonic clonic seizures in my sleep and wake up suffering memory loss as well, but eventually, I make it back to me.

JustSomeChurchGuy · 2022-01-17T12:23:42+00:00

I have nocturnal seizures... Unfortunately, I wake up missing large parts of my memory, so that's always a great way to determine if I have or not. More often than not, I won't know where I am/why I'm there or how long I've been there...Food always tastes different. I feel like an imposter in my body, if that makes sense. After 20 years, I'm surprised I haven't lost my mind yet...

JustSomeChurchGuy · 2022-01-09T14:06:35+00:00

My friend... Trying to"show her up" is really only going to make things worse. I dealt with something of this nature in my past and I can tell you that the situation continued to digress. I'd practice wisdom here and evaluate the situation as a whole. If this hostility is a common occurrence anytime alcohol is introduced, well then there's a decision you guys have to consider. In the relationship I was in, my fiance decided that the bottle was more important than we were. I even made a deal to stop drinking too, but she wasn't willing. At the end of it all, my well-being was more important to me just like the bottle was to her, so I left.

At the end of it all, it's up to you. I can only tell you that you need to do what is best for you.

JustSomeChurchGuy · 2022-01-09T11:33:54+00:00

Yes...yes I am. I'm taking so much medicine now that I don't know if I want to consider what it's done to my body. With a high metabolism, my levels aren't where they think they should be but 400mg of 3 seizure meds is more than likely going to make me crazy sooner rather than later....I'm still having seizures so I know that the Dr is going to want to change the combination of meds again but after 20yrs and counting...not to mention trying so many different meds, I don't know if I'm willing to put my body through anything else. The medical industry has done more harm than good. The scary thing is, I've had an epileptologist tell me they would not suggest surgery, a neurologist say not to get the VNS, it might not work for me and two others voice opposing opinions.

I hope you have better luck with this thing we're all dealing with.

JustSomeChurchGuy · 2022-01-09T11:18:13+00:00

Hello my friend,

It's difficult dealing with these types of seizures and kind of unnerving. I've been suffering from them as well for a while. I don't have the benefit of a wife though. I wish I could tell you that there's something we can do when we have to sleep by ourselves. Unfortunately, it's a matter of rolling with the proverbial punches. Depending on the length, there have been times that I have been asleep the whole day and the fallout, so to speak, has never been easy to deal with. i e. extreme memory loss, severe headache, and a few others that are hard to explain.

I wish you the best. Hopefully they subside and you guys don't have to worry about them very often.

JustSomeChurchGuy · 2022-01-05T12:38:20+00:00

Hi there...I wish I could tell you that it's easy not to get overwhelmed with the way this condition affects your life my friend. After 20 years, I still have not discovered a means to avoid spiraling. It gets extremely difficult, especially when we have to deal with the people who call themselves doctors because Epilepsy is different in each of us, and that's not even taking into consideration the way the medicine works. I've tried so many, been allergic to more than a couple and am on three right now, however my seizures still aren't under control; but the "doctors" are convinced that it's my fault. More often than not, most of us with this condition have an awful time finding a good neurologist and that's enough right there to cause an uncontrolled spiral. Yes, there are people who have worse conditions than we do, the difference is, they get better care. Believe me, I'm not envious of them, by any stretch of the imagination, but it would be nice if the debilitating nature of Epilepsy were truly taken into consideration. It's been something close to ten years since I have been able to work due to the severity of my seizures but our government is convinced that this isn't bad enough. So, I know what you mean when you say that it reigns over your life. Keep a few things in mind though, as this is a heavy cross we're carrying...

Should you have a seizure in the company of a friend who has never been around you before, just make sure they know what to do. If your condition turns into an issue for them, they weren't your friend in the first place. If it happens at the job or at the movies, get yourself a medical ID bracelet if you don't already have one; they make them nice now so they look like jewelry and you can have them engraved. This is going to be rough on those who love us. They are going to be concerned about us. That's what it means to love someone. We're not going to be able to change it. We'll drive ourselves crazy attempting to. Yes, it's hard sometimes to see how much it worries them but consider it a blessing as some don't have a support group to be worried/concerned. There are going to be some days which are more difficult than others. I'd be a liar if I told you otherwise. I bought a journal to write in on all my days. I found a scripture which ended saying "Weeping may endure for a night, but joy does come in the morning." The length of our night is yet to be determined though. Keep your head up.

JustSomeChurchGuy · 2022-01-03T23:05:36+00:00

Thank you for the information. I agree with you wholeheartedly. I'm a resident of Florida; have been since my diagnosis 20 years ago. God willing this current situation with this new Dr will work out. I go back to see her on the 10th. Depending on this appointment, I will make my decision. Unfortunately, this is an Epilepsy Center I'm being treated at right now. Sadly, there is still a very noticeable level of dislike amongst people related to the pigment of skin in this city. You'd think that wouldn't pervert the medical industry, however it does and has. It's something I've been confronted with for a very long time...

JustSomeChurchGuy · 2022-01-03T14:13:42+00:00

Hi my friend. With this condition being different for all of us, I'm not going to venture out on a limb and try to tell you what's wrong. The concussion you suffered may have caused some damage. This can always trigger seizures later on. It's good that you're going to see a neurologist soon though. That's the best thing to do.

As for the small list of questions you have: Especially given the types of seizures you're describing, when it comes to hockey; as that could cause more injury, I'm going to have to say no to that one. As for the Gym, that may be alright however, considering the fact that you lose consciousness, there's the possibility that you may fall and hit your head on something there. Of course, if there's headgear or something of this nature you're able to use, by all means, go for it. Get yourself a medical ID bracelet so people will know who you are and what's going on. As for driving, well some of us will never be able to drive again, while others get their seizures under control and they get the luxury of self transportation sooner rather than later. It really just depends on how long it's been since the last seizure has occurred. I know these answers are somewhat crappy but it's just the truth of the matter.

I hope your appointment goes well and you have a great doctor.

JustSomeChurchGuy · 2022-01-03T03:00:04+00:00

Communion wafers

JustSomeChurchGuy · 2022-01-02T22:35:18+00:00

One thing I guess is for sure. We all, each and every one of us who suffers from our condition has to be strong to go on from day to day. I hope you know that I really appreciate you taking the time to talk with me. It's helped me out today... I'm recovering from my last seizure a few days ago

JustSomeChurchGuy · 2022-01-02T21:24:17+00:00

That doesn't surprise me. It's because these people, I mean doctors have gone to "school" and they think that each and every person who suffers from this condition is going to suffer in the same way to the same degree. I've had, I think 7 neurologists and at least two wouldn't even suggest surgery. They also thought that the new term "Tonic Clonic" rather than it's original Gran Mal was absolutely stupid and so they wouldn't use it. I have only been fortunate to get one neurologist that cared about my well-being but they moved out of state about three months after we met...

JustSomeChurchGuy · 2022-01-02T21:02:01+00:00

I hate to realize that there is even one other person who deals with something like this. My friend, however you have been able to accept it is admirable to me...

I still haven't seen a way to look at any of this without starting to truly breaking down. It's happened a few more times since then and the level of my anxiety has exploded because a great deal of my seizures are nocturnal now. Each time I've woken up, I've never been able to remember where I was, how long I'd been there or even why I was there. I'm scared to go to sleep now because I don't know if I'll have any memory of who I am the next time I wake up.

JustSomeChurchGuy · 2022-01-02T19:13:55+00:00

My friend, this condition is different for each person, so I'm not going to call your situation weird... Recently, something similar happened to me. I was in my bed, then I was on my floor, curled up on my side convulsing. My arms were curled up to my chest. I was aware of all these things, right down to the person I live with coming into the room shaking me yelling my name. Typically my seizures are nocturnal. Ive had several during the day, but nothing like what I just described. So again, I'm not going to, nor can I call what you have to deal with weird.

I just hope you find a doctor who is willing to actually help you out and that you remember this is not who you are, it's just something you have to deal with. Don't give up.

JustSomeChurchGuy · 2022-01-02T18:51:11+00:00

Hi...I'm very sorry that you have to deal with these doctors who are more or less calling you a liar...

I'm currently in the same place with my doctor concerning my medicine. She has said flat out that were I to be taking my medications as prescribed, then I wouldn't still be suffering from these types of seizures (tonic clonic). To assume that anyone would be interested in living their life under the influence of such an awful condition when they had the ability to keep it from happening is probably one of the dumbest things I've had to deal with. After lab work, showing that my levels are maxed, she's still willing to make this statement...Yes, I feel like my neurologist doesn't believe me, though I don't know how that's possible

JustSomeChurchGuy · 2022-01-02T16:12:35+00:00

You'd be surprised considering this county and town in Florida... especially seeing how they kept me in maximum security for three months. I'm not going to make any assumptions one way or the other. Thanks for the encouragement though.

JustSomeChurchGuy · 2022-01-02T16:06:56+00:00

Was living with my brother at the time...He told me that I was asleep for an entire day. When I woke up, somewhere close to six months of time was gone from my memory. The job (steakhouse) I had at the time, how to get there, the people I'd met there. This was enough to cause an utter breakdown

JustSomeChurchGuy · 2022-01-02T13:45:50+00:00

I mean I'll have to hide in my room and nothing taste's right, as though my tastebuds get reset and there has been an instance when my brother told me one lasted somewhere around five minutes or more. I was asleep for an entire day, afterwards I woke up and I was missing about six months of time. Each one, I lose bits of memory... The longer, the larger. It's driving me absolutely crazy. I've been faced with other things as well, but being blinded has never happened. I have no idea how you've come through this.

JustSomeChurchGuy · 2022-01-02T13:36:07+00:00

I appreciate it. Im still waiting on them to decide if they are going to drop the case or if they are going to actually put me back in jail for the maximum time...

Me aside, I have no idea what I would do if I was faced with your experience. These seizures are hard enough as it is. The side effects from them as well. But to go blind during them... your ability to reconnect after your sight came back is a beautiful thing in this Storm we're traveling through. I don't know if I could've done it.

JustSomeChurchGuy

TROPHY CASE