March 17 2022

[Orchid]

Last year March 17 2022 changed my life. I was standing in the hallway when I just dropped for no reason. I then started to what we thought was pass out anywhere from 5-30 times a day. I made a doctor appointment he told me I was having seizures that were pseudo seizures after he ran lots of test. I saw a specialist. I could not walk for 6 months because of how many I was having. I never when I would have one how long it would last. I have the ones where I just drop and I am completely out and do not move my eyes move around I can hear everything but can not respond to you. I can sometimes smack my lips or squeeze hands. I have laughing ones where I will just start laughing and will laugh at nothing until I usually start crying and it is a heavy crying. I now where earplugs in the store because of noise I still have them when I  am out in public but not as much. I am doing better through medication and therapy and the help of my family sorry so long thank you all for listening love you all 

[Jeepers]

Oh my Orchid.   

 

I am so sorry you are going through this! It must be so scary for you and your family. I am glad the medicine is starting to work for you though. Sending up prayers for continued progress and a complete recovery. Love you too Hon.    

[Orchid]

They say it is caused from childhood trauma and that I will have it for the rest of my life. Certain sounds, lights, even smells can make me have one. I can not watch certain things on television or videos because I will have one. Any abuse of any kind. Women being abused just a few of the ones. When I do have a sezurie I have to have silence and know I am safe. If it is loud I stay in it longer. 

[Midnightmom]

Sounds a bit like Epilepsy. My father developed it in 1963(?). Most of the time he would have Peti-Mal seizures. He would be having a converstion with someone and a seizure would hit him "out of the blue." He would make a funny semi-laughing sound for a few minutes, and when it was over he would resume the conversation exactly where he left off - not knowing that he had suffered an episode. 

 

His epilepsy was brought on by the shock and stress of his father showing back up in his life (with a new family) after decades of no contact.

BTW - seizures can be brought on by flickering lights, changing shade patterns, etc. Imagine driving down a tree lined country road on a sunny day. If your car is traveling at the "correct" speed a seizure could be triggered by the constant changing of the light/shadow pattern.

Edited March 11, 2023 by Midnightmom

[Jeepers]

I have heard that some seizures can be triggered through smells and sounds. Flickering lights on TV's can cause them too.  

 

Midnightmom, we were posting at the same time but yes it does sound like epilepsy. 

 

Edited March 11, 2023 by Jeepers
Added Info

[Orchid]

It is kind of like it. I can freeze in the middle of eating with the spoon half way to my mouth and have one and they can not get the spoon out of my hand our the bowl. I don't spill my food either it is really weird how I don't spill anything

[Orchid]

1 minute ago, Jeepers said:

I have heard that some seizures can be triggered through smells and sounds. Flickering lights on TV's can cause them too.  

Yes the beeping of the cash register at the store sets the off. The noise of the electric scooter bothers me. I wear ear plugs at all times inside the store and sunglasses on top my head in case I need them if it gets to bright. 

[Mother]

Oh Orchid,  I’m so sorry you are going through this.  You are in my prayers. 

[Littlesister]

Orchid that does sound a bit like epilepsy. Keeping you in prayer that the medication works and you get through this with no more episodes. I know that can be scary not knowing when one will happen. 

[Becca_Anne]

That's a lot to deal with and I wish you didn't have to. Hugs. I'm glad you have found a few things that help you.

[Mt_Rider]

Wow.....and this began suddenly? And you can't anticipate episodes much?   That would be super unnerving!!!   

 

MtRider   

[Mother]

I just had a thought Orchid.  Could you be a candidate for a service dog? I met a man two weeks ago in the grocery store who had similar episodes and his dog had been trained to let him know when he was going to have one. His dog was a border collie but he told us they use many different breeds for this.  It might be worth investigating if you haven’t already.  🐕‍🦺

[Orchid]

I am not sure if I would be a good candidate or not. I don't know who I would talk to about it. 

[Mother]

I believe you would be.  Perhaps start with your doctor. He may know. Otherwise maybe some online searches might get you on the path.  Please try. 

[Littlesister]

I think a service dog would be a great idea. And would add that level of protection for you as well if you should have a seizure while you are out shopping. 

[Orchid]

Do you have to pay for the service dog or their training? 

[Ambergris]

Sometimes.  It pays to do your research, because some trainers are in it for the money, and some are not.  https://epilepsyfoundation.org.au/understanding-epilepsy/epilepsy-and-seizure-management-tools/seizure-alert-dogs/

 

Most people can't tell I'm having a seizure.  My friend in Texas notices them because she was trained to spot them in a juvenile relative and in her brain-injured husband.  I knew something was going on from about 2017 but didn't get a real heads-up until 2019.  Then I had four EEGs that showed nothing before one this month that showed plenty.  Between 2019 and this month, they didn't know if I was having seizures or pseudo seizures.  Now they know.  Not that it's changed the medication or anything.  I can't drive because I never get six months past the last seizure.  I sometimes fall, too, but it's not as bad as yours because sometimes I go months or even more than a year between falls.  Just know you're not alone, and the more you know, the better off you are.

[Mt_Rider]

7 hours ago, Ambergris said:

more you know, the better off you are.

Yeah, I think that's always true!  Cuz you pretty much need to know so if you get a doc who doesn't.....you'll be able to discount that advice.  Unfortunate but we need to do that sometimes.

 

I think a seizure-alert dog would give you so much peace of mind.  And if your gait is unstable, would there be a dog trained for duo purpose?  Gait steadying and seizure-alert? 

 

MtRider    that you'll find the right way to proceed! 

Edited March 13, 2023 by Mt_Rider
annoying typos

[Mt_Rider]

6 hours ago, Ambergris said:

Then I had four EEGs that showed nothing before one this month that showed plenty.

 

I know this story about not showing on tests!!!!!  I didn't show any demyelination on MRI's back 30+ yrs ago.  SO...I did another round of brain, lower/upper spine recently.  Nothing shows.    At least I have the assurance that my primary doc knows MS doesn't always show.  Ya just eliminate everything else! 

 

MtRider ...does the current EEG test change anything now?

 

[Orchid]

Thank you for the information

[Littlesister]

Orchid, I do hope they find out what is causing it and can get you straight again.  

I know that is a hard thing to deal with. But I do agree with the others. A service dog would be a great thing to have. 

 

My DH had them for a while a few years after he had his stroke. Before we knew what was happening he was outside cleaning fish and I looked out the window and he was holding a fillet knife up in the air and then just dropped it and it cut across his other hand. That cost him 8 stitches. I still remember that for some reason. Then after that other things started to happen. It would be like he was staring into space as if he didn't know you were there talking to him. And then he would come out of it. It was always little things like that. He was put on medication for it and then when he had his heart attack it stopped. I think the heart blockage he had is what caused his. 

 

But there are so many things that can cause these and I hope yours will be figured out soon and controlled or better yet not have them anymore. The answer is out there somewhere they just have to find it. 

[Ambergris]

One thing about laughing that I wish I'd known years ago is that a sizeable percentage of women have an instinct to laugh when terrified or shocked.  In high school, I lost some friends or potential friends for laughing hysterically when classmates had a car wreck right in front of us.  In college, I was put in a bad position (sexually) by some males who were friends, who kept going further because I was laughing so hard I could not speak clearly, and my repeated "stop" and "no" were accordingly not taken seriously.  My boyfriend later asked, "Well, why did you keep laughing, then?"  The answer was because I couldn't not laugh.  It was out of control.  A lot of women have this reaction, and it makes cops not take them seriously either.  It's a trauma response.  All this is not to hijack your thread, but to point out (in case you didn't realize it) that laughter is just as valid a trauma response as crying or screaming.  It's just not a trauma response that most people understand.

[Orchid]

So very true I laugh to cover up souch of my trauma

[Littlesister]

That laughing part is so true.  It bought back a memory of my older sister. When my father passed away,  my sister started laughing really hard. And nope she could not stop. Had to take her to ER where they gave her an injection to calm her down. She was still laughing in the ER before she got the injection. Can't remember what it was they gave her but my guess was maybe a sedative of some sort. But it did stop her laughing. She wasn't laughing because he died but because it was her reaction to the news of his passing.