Bad news

Posted by Leonard @jakedduck1, Jul 24, 2020

Well I was at Costco today mainly to buy water and a pie because I saw a post that John,
@johnnishop was talking about on the Neuropathy section. I haven’t been thinking of anything else except getting a pie at Costco but they only sell pies from September to December. The lady said they ended up throwing them all out. I told her she should’ve giving me a call. But that’s not the point of my story
I was doing fine for about 10 minutes then the back of my neck started hurting really bad and I felt weak I didn’t think I could make it back out to my car. On my way home I had double vision which I occasionally have. I stopped at my neurologist office which was a mistake and I saw him and he believes that I had a focal aware seizure in Costco. Although I suppose that is possible I don’t really believe that’s what happened. After 13,000+ seizures I pretty much know when I have a seizure not Tonic-Clonic seizures but focal seizures pretty much for sure, Especially Focal Aware seizures. He wouldn’t let me drive home. Now I’m wondering if he’s going to yank my drivers license again. I just paid $3100 to get my car fixed and I’m certainly not gonna let it just sit again and deteriorate. He can’t prove I had a seizure and I can’t prove that I didn’t and of course the motor vehicle department is going to believe him over me. So now I have to find a rheumatologist and see if there’s arthritis in my neck and if it could’ve possibly caused the issue at Costco. The symptoms that I had at Costco could have certainly been a seizure manifestation.
I was going to ask him for an EEG to see if there was any focal activity but that would only give him more ammunition to prove his case.
I imagine he will yank my license again but whatever happens will happen, no need to stress about it.
Jake

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I am sorry to hear this Jake. Does your DMV specify what type of seizure is required to meet the standard for removal of license? I don't understand all of the terms you use in regards to seizure types so maybe it doesn't make any difference. Thought I would ask. Mxy.

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How disappointing, @jakedduck1. Is this the same problem that you had before when you were shopping?

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@mxyzptlk32

I am sorry to hear this Jake. Does your DMV specify what type of seizure is required to meet the standard for removal of license? I don't understand all of the terms you use in regards to seizure types so maybe it doesn't make any difference. Thought I would ask. Mxy.

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@mxyzptlk32
Hello,
You’re generally allowed to keep your license if you have nocturnal seizures during Which happen only when you’re asleep. Also if you maintain consciousness during a seizure they normally let you drive so hopefully they won’t take away my license again. Besides I’m not so sure it was a seizure anyway but of course what I think does really matter.
Jake

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Re: @jakedduck1 posted a new Discussion "Bad news"

Sorry about your issues ....always a miserable set back for sure. I have learned when I need to pull back from driving for however long it takes me to not have any seizure like events at all. As difficult as it is I fear what may happen to others if I don’t. The last time I had a seizure, my doctor upped my dosage and I didn’t drive for two weeks free of any side effects or events. Better than the two years it used to be. She knows me. I’ve dealt with my epilepsy for over 50 years, and I guess we are all different , just so so happy I have been controlled on medication for the most of those years. Having given up my vehicle we now have just the one, and much like not driving due to seizures, I mind that loss of Independence more than anything. I don’t like imposing on others, and more over I really miss the sense of independence. I am truly fortunate to have a husband who drives and does Most of the shopping and errands.
Would be interested in knowing what others With epilepsy who feel stranded do for shopping, groceries, and medications? Covid has certainly not helped in that regard.
And maybe it has, what with delivery and all. But there is still the sense of isolation that’s not healthy.
We live in a rural area, if I were alone and things progressed so I couldn’t drive it would be scary. Moving closer to town And transit would be my only alternative. That would be hard too!
Love where we live.

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@hopeful33250

How disappointing, @jakedduck1. Is this the same problem that you had before when you were shopping?

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@hopeful33250
Not exactly, Before I had pain around the occipital lobe (the back of the head) which moved forward. I didn’t have that this time instead I had severe pain in the back of my neck although I did have the same weakness and didn’t feel I could walk much farther. The pain went away when I sat in my car and I was able to drive and function normally, well, normal for me anyway.
I was eight years seizure free and I sure hope they’re not coming back in a different form. The problem is you can go to a half a dozen doctors and get a half a dozen different diagnosis’s. I would feel more comfortable if they would show me a lesion on my brain or a specific type of electrical discharges on an EEG. Had I been in the hospital I would’ve demanded a test to check for an increase in prolactin in the blood. But the kicker with this test is that it has to be done within 10 to 20 minutes of a seizure. By the time you get an order and get to the lab the time is usually long past. Another problem with this test as far as I know anyway it only indicates a seizure if it’s a Tonic-Clonic or a Focal Impaired seizure, In these types of seizures consciousness is lost. Mine was thought to be a Focal Aware seizure where consciousness is not lost. Basically an Aura. Auras seldom if ever last the period of time that I was symptomatic and unlike any symptom I’m familiar with leading me to think it must’ve been some other issue.
Jake

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@maggiek
Hi,
I live in the city and sometimes I don’t realize how lucky I am. On a good day I could walk to town but I’m not sure I could make it back. I had my brother take me to town one day and then I walked home so I wouldn’t bother him again. I would feel so isolated out in the country.
Just in case I’m not going to drive for a while either. Monday I’m going to go get my seizure levels drawn just to be sure. The loss of independence really gets to me as well. One of my friends who lives in England who has severe epilepsy takes the bus but she has been thrown off it numerous times for having seizures. Not to mention all the cruel comments she has been subjected to. Sadly Stigmas are still alive and well.
Jake

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@jakedduck1

Hi Jake,

I hate the stigma thing. I have a personality which is pointed inward so for the most part I am oblivious to the outside world. Perhaps I have not experienced it either. Hard to tell with me. If I had noticed it there would have probably been a small war, perhaps a skirmish.

Anyway back to the stigma thing. I would like to see if we can get that changed. I think we need to be the first to change. There is no way I can expect others to look at me differently if I don't.

Many believe epileptics are prophets (please see the scientific article I previously posted) and I have decided to work that angle. The ability to prophesize is like a superpower and when I prefix my name with "The Prophet" it just sounds more impressive. Try it Jake. With great fan fare let me introduce The Prophet Jake D. Duck. Jake D. Duck has prophesized the rising of the sun and the appearance of the moon. He has predicted the stock market will go up and then down. Folks, he is a prophet for the ages.

I can spin almost anything. My boss once told me Mxy you are wordy, without missing a beat I said I prefer thorough but I cannot argue with you. Instead of I may lose my license perhaps, I decided not to drive for I have "seen" a great collision which I do not want to exasperate, would be better.

At any rate The Prophet Mxyzptlk has a bit more zing than Mxy. Wishing you the best.

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Today I am more convinced than ever I didn’t have a seizure yesterday at Costco.
Today I am very dizzy and can hardly walk. used my cane to walk out to the car to take some grocery bags out and I fell down four times And staggered all over the place. My neighbor came over and asked me what was wrong I wish I had known what to tell him but he took my bags and put them in the car and helped me back into the house and here I sit. Anybody ever have similar symptoms? If so what did you do about it or what did the doctor say it might be. If it is any type of epilepsy it must be nonconvulsive status epilepticus which I don’t think is really likely. In 13,000 seizures I have never had these symptoms ever before which of course doesn’t mean it’s not possible now but I still think it’s unlikely.
Jake

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@jakedduck1

Today I am more convinced than ever I didn’t have a seizure yesterday at Costco.
Today I am very dizzy and can hardly walk. used my cane to walk out to the car to take some grocery bags out and I fell down four times And staggered all over the place. My neighbor came over and asked me what was wrong I wish I had known what to tell him but he took my bags and put them in the car and helped me back into the house and here I sit. Anybody ever have similar symptoms? If so what did you do about it or what did the doctor say it might be. If it is any type of epilepsy it must be nonconvulsive status epilepticus which I don’t think is really likely. In 13,000 seizures I have never had these symptoms ever before which of course doesn’t mean it’s not possible now but I still think it’s unlikely.
Jake

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Dear Jake,
Sorry to hear about all that you have recently experienced. That incident at Costco must have really been upsetting. I never would have gone to my neurologist right away then. Having things checked out by a theumatologist is a good idea. I would rather hear news of arthritic problems than a seizure problem.
Take care of yourself.

Laurie

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maggiek@maggiek,

I lived in a rural area and I needed to depend upon my mother to take me to the store when I lived with her til I was 31. I moved own my own in the rural area and I took the bus to get places, store, etc. If they were nearby I walked. Twenty years ago I moved to the city. I still use the buses to go all places, store, etc. They run better in the city. I walk places when I can. I am a walker. A walker who walks with her walker.

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