My name is Taylor...I'm new

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Taylor_105

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Hi all,

I am Taylor. I am 39 years old and am dealing with the evil disease of epilepsy. Yesterday I fell in the kitchen when unloading the groceries and hit my head causing it to crack open and bleed everywhere. Scared my roommate half to death. A few stitches later and a headache plus a 3 hour nap and I am no worse for wear. It's frustrating, annoying, and embarrassing. The saddest part is that I am on disability for something else and they only pay me $650 a month so I am looking and looking for a used adult sized seizure helmet that someone wants to sell cheap...second hand. I cannot afford a new one and cannot wait til the docs appointment to get one. So for all of you out there. Does anyone have a hard shell seizure helmet that is not currently being used anymore that I can buy from you at a reasonable rate? It's hard for me to even ask. I never like to ask for hand-outs or cheaper things but this is a need. Three weeks ago I fell in the kitchen when I was alone for two days and ended up with a small brain bleed. Anyway, PM me if you can help me. I would appreciate it so much and so would my poor head. lol

As for the rest of my life, I have tonic clonic, absence, and some other seizure..not sure what it is ...but my roommate says I do this chewing motion, look right through her, and pick at my clothes with 2 fingers. Does anyone know what that one might be called?

My heart goes out to everyone who suffers from this disease and especially the babies and children. The parents who have to watch and hold their breath that their little one will be alright.

Oh yeah, forgot to mention I'm a guy so yeah. ;) Much hugs to all, Taylor:hugs:
 
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Hi Taylor, welcome to CWE!

I'm sorry to hear about your latest spill. I hope you can find a helmet to help -- have you tried asking your neuro/GP if they know of any helmet resources out there? Do you have a local epilepsy support group that could help? Or maybe the manufacturer would be willing to sell you one at a discounted price. (To maintain privacy and safety, CWE doesn't allow the public posting of email addresses, but members can easily PM you with additional suggestions.)

The third kind of seizure you describe is a Complex Partial. Those can feature impaired awareness and automatic movements (chewing, picking) like the ones you mention. I hope your neuro can help you get better seizure control soon, maybe by tweaking or changing your meds.

Please make yourself at home here at CWE. It's a great place for support and insight. :)

Best,
Nakamova
 
So sorry about the e-mail addy. Didn't know. I just recently started having seizures that landed me on the floor so the neurologist did not think I needed a helmet at the time I saw him because I had yet to fall. I live in the Tampa Bay Region of FL. so I don't know of any support groups but I will look into it. Thanks for the info on the name of the seizure. I have heard of those. They are new to me though. UGH! The saddest thing is I have a Morphine pump surgically implanted inside my body and I fear when I wake up on the floor all bloody and in pain that it may have gotten broken when I land on the side of my body it is implanted in. I fear it being broken more than my own head!! So I truly need to find a helmet. I don't think I would need to wear it outside the house but when walking across hard tile flooring it would just be a good idea. Because I also suffer from a painful disease that when outside the home I have a wheelchair for, I do not think I would need to wear the helmet out in public. I feel bad for adults who have to and are ashamed. There is no need to feel ashamed but I can see how they would feel that way. Ignorant people staring at you can only be tolerated for so long. After awhile you just want to start punching people. lol
 
Ooh, and these are even cheaper, and may work well for indoor use. They are soft, but have air chambers to cushion and disperse the impact:
http://crasche.com/products
 
Hi Taylor. I'm sorry about the seizures and the fall. I had a similar fall where I hit my head on the corner of my coffee table and had blood on my head, neck, face, couch, throw pillow, bed. I lose my memory surrounding the seizure so I really don't remember and found the blood the next day. I apparently got an ice pack out to put on my head at some point and that had blood on it too. I didn't go to Urgent Care until nearly 20 hours later and it was too late for stitches, but it only would have been 2 or 3 at most. I'm putting corner protectors on my tables now but I haven't reached the point of wearing a helmet, though my sister suggested it. I only have these seizures every few months, so I don't think it's necessary yet. I usually land on my knees, elbows, hands or backside.

I hope your doctor can help. Maybe a new med, some alternative therapies, stress relief, something. Many good thoughts and hugs.
 
Hi Taylor,
I want to add my welcome to CWE and I'm sorry about your fall. You are amongst friends here, who share in many of the same experiences so please don't ever feel embarrassed to ask anything or share anything. Are you on Medi/Medi? It seems that your doctor can write you a prescription for a helmet, if so. I did a search on Craigslist in your area and didn't find anything. I'll see if I can find something inexpensive on Ebay.
 
Taylor_105 said:
I do this chewing motion, look right through her, and pick at my clothes with 2 fingers. Does anyone know what that one might be called?
Click to expand...

Almost all of my seizures are Complex Partials and I do things like this during most of them. I'm usually blacked out during them so I don't know what I'm doing. My husband will see me staring off into no where. I might be smacking my lips together. I might be playing with something just rubbing it or moving it around in my hands.

When I had back surgery my dr wrote me a prescription for a walker and the insurance paid for it, so it could be worth a try to do that for a helmet.
 
I REALLY like the beanie hat looking helmets. no one would even know I was wearing protective head gear and they are cheap! Thanks so much for the link. I will look into getting one then tell you guys how protective they are. I can say this much. I used to skateboard and always wore a helmet but when my seizures got worse I quit and sold my boards. I miss it. But the fact that those hats are sold to skaters who don't like to wear helmets but want to look cool and not have people know they are wearing something to protect their head from concrete makes me think it would protect me and no one would even know. I wear beanie hats all the time so people would just think it's me being me. haha Thanks so much for that link. I will let those of you who have drop seizures or tonic clonic how it works.
 
Hi
Sorry to hear about your fall. I have a friend who is struggling with seizures. He is newly diagnosed and is on meds but feels like he is slipping away and that he is a burden on everyone. He has been drinking beer to cope which seems to make things much worse.
 
From my own experience, alcohol certainly made matters worse, I stopped altogether, had to, it was eating away at the brain cells. My family assure me I am not a burden but having to rely on them for transport doesnt build my confidence and my doctor tells me I will not be driving again although I assure her I will - when, I have no idea but I must feel confident!!
My seizures occur during my sleep so I dont fall obviously. That is the present ones, for the past 12 months.......
 
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