[PurpleFlyingMonkeys]

I've had two (one drug induced, one stress induced) seizures in the last 12 months. The doctors do not believe that I have epilepsy and say I likely wont have another seizure, but they said that after my first one and then I had another so...

They suspended my license which is a bummer but I'm ok with that. 3 years from May I can hopefully get it back if I don't have another. My first seizure was a "grand mal" seizure and I was experimenting (idiotically) with a psychadelic. So the neuro and docs said it was due to the drugs and I wont have another. But then I did.

The second one was on the way to work (fiance was driving as my license was suspended in August for 3 years due to the first seizure, they just resuspended it when I had the second) I apparently collapsed and stiffened, shook for a second, stiffened again and collapsed again and came back out of it ears ringing and vomiting (like the first one) but didn't bite my tongue wet myself or anything like that. My pdoc and t believe they may be psuedoseizures and/or related to my DID.

But at my work they are telling me that I should get a medical alert bracelet. I'm already working on a charm bracelet so adding one to it wouldn't be a huge deal but... Why would I need it? They all seem to think I need it. What good does the charm do and how is it useful? Should I be even considering it just yet? No one was even supposed to know about it. After the first seizure when I called my work to get two days off work I told the manager I wanted to keep it private. Sure enough when I came into work everyone knew and started talking about doing a fund raiser for me.

So now everyone knows I have had seizures, I don't really think it's a big deal for others to know, I just didn't want them to make a deal out of it. Wouldn't that charm do just that?

I guess I just don't understand the charms for seizures and when/how/why you would get them, the purpose that they serve you know? I'm sure they do serve a purpose which is why I'm here now.

Sorry to type so much. Thank you in advance for any help...

[shezbut]

Hi PFM,

In my experience, the purpose of getting bracelets for E is to warn others. The purpose is so that others know an ambulance doesn't need to be contacted every time a seizure hits. Paramedics are to be contacted if a person doesn't re-gain consciousness between seizures or if the seizures last longer than 5 minutes (where the person with E is unconscious continuously).

If your seizures are still being diagnosed as non-epileptic, then getting a bracelet may not be the best move for you. It may be most helpful for people to call 911 if/when a sz strikes again, so tests are more conclusive.

The bracelets aren't real cheap, imo. They've got some real cute ones out there though. It is nice that your co-workers are supportive of you, rather than freaked out by possible "E". I've seen lots of people react in the negative way ~ so it's nice to hear a positive story.

http://www.americanmedical-id.com

I have epilepsy and used to wear a bracelet. My seizures were petite mal / partial complex seizures. The purpose of a bracelet is to help alert people to your medical condition when a seizure strikes. In other words, if you were driving a car then a police officer would know what to tell the ambulance. It would also explain what is happening - in other words - you would not be arrested for drunk driving but given medical treatment for a seizure. You can have whatever you want engraved on some of the bracelets and you should consult with your MD on what it should say. I think it's a pretty good idea but the choice is yours.

[PurpleFlyingMonkeys]

Thank you both for your replies, its given me a lot to consider. I think i will wait, if i have one more confirmed seizure i will get a charm, and since i can have it engraved i will probably have something along the lines of "undiagnosed seizures call 911" or something like that, but i am hoping i dont have another, they are about one of the scariest, if not the scariest physical illness thing to ever happen to me. My heart truly goes out to those who have them.

Is there a way, when you feel one coming on, to fight it? To stop it? Im not on any meds, they dont want to give epileptic meds and i have a fear of meds, are there any ways to fight it without meds when you feel it coming on?

[shezbut]

If you have the opportunity, you can sit or lay down in a clear area. One without things that could fall onto you or you might jab yourself with. Loosen up clothes that fit tightly around your neck. Put a small pillow under your head, but chances are good that you would quickly lose the pillow when a tonic-clonic sz begins.

In my experience, a sz can't be "fought off". You can't control the electrical activity occurring in your brain. All that you can do is take meds, if recommended. Avoid common triggers for seizures: stress!! (work through the stress in some way, talk, exercise, play a board game...), avoid alcohol and drug use, avoid "light shows" (a very common trigger), get solid regular sleep, don't push yourself too hard (leading to hyperventilation), and eat healthy snacks & meals.

~Best wishes to you!~

[PurpleFlyingMonkeys]

Stress... thats the one im having trouble with...

Im having a hard time as i cant afford to see the neurologist, my primary care doctor thinks they are from one of two things, a psuedo seizure or caused by my migraines. My t and pdoc think they were either psuedo seizures or they are me switching (DID diagnosis) all that i know is i blackout from them. I get really dizzu, everything gets dark and im gone for 3-4 minutes. I come back vomiting and ringing in my ears with a head/neck ache. Remembering nothing of the seizure itself.

But all docs agree, they were caused by stress. But i also blackout (from my DID) when under great stress and the feelings are similar. T tells me not to fight off the switching but my fear that it may turn into another seizure makes me fight it off. Yesterday while sitting at work i felt like i was going to have a seizure. I was sitting down but got super dizzy and things started to go black, i grabbed onto the desk and fought to see and feel the things around me and it went away, but the dizzy out of it feeling lingered for about an hour.

So im trying to distinguish the DID from the seizures. I was able tp fight it off last night, so it wasnt a seizure? I tried to fight off the one in may but couldnt, i just gave in when i realized i couldnt.

Gaaah its so scary and so confusing

[shezbut]

Originally Posted by PurpleFlyingMonkeys

So im trying to distinguish the DID from the seizures. I was able tp fight it off last night, so it wasnt a seizure?

No PFM,

What occurred last night was not a sz, imo. Your description sounds more like dissociation to me.

Simple partial sz's typically don't last longer than 30 seconds to a minute or so. A partial seizure can secondarily-generalize, and become tonic-clonic, and stopping that from occurring takes a trained person who is constantly engaging the patient with questions to respond to. Personally, I haven't ever been able to prevent a complex partial sz from occurring. I've only heard one person say that they're able to stop a complex partial after the aura began, and I have spoken with literally at least 100 other people with E.

Doctors are typically very careful in making DID diagnoses vs. seizure disorders. This is because a lot of the symptoms of seizures are the same for dissociation. The major difference between the two illnesses is that untreated (or poorly treated) sz disorders do cause physical brain damage. Dissociation is very disturbing as well, but it leaves no physical damage for cameras and electrodes to pick up on. For this reason, while I have experienced dissociation in my own world many times, I was very surprised to find out that doctors must diagnose a person with either DID or epilepsy. Diagnosing the same person with both disorders cannot be done, and E takes precedence over the DID diagnosis.

Hope that explains it better for you, rather than cause confusion. I kind of tend to get lost as I type and new thoughts take place of the old ones, and I can't remember if I got across what I was trying to post in the first place! Pain in the rump brain of mine. Ugh!

[PurpleFlyingMonkeys]

That really did explain a lot, thank you. It also explains a lot from my past as well. Ive had two pdocs in my life that have brought up seizures thinking it might not be DID but instead could be seizures. I was confused but it makes sense considering the symptoms. Ive jad a CT scan done once or twice and they came back fine but thats the only testing ive had done. Back about 5 years ago i was under a great deal of stress and had a blackout that landed me in the emergency room. I only remember flashes of that night but i was completely unmedicated and no drugs pr alcohol which are doctord first questions. From what i was told the next day, i was crawling on the floor yelling that i was going to die. I asked them to call the ambulance when i couldnt stop vomiting. The ambulance hooked me up to oxygen and an EKG and i remember a flash of being rolled into the hospital on a stretcher. I can remember like a 2 second flash a few times that night but of the entire night (and it started at like 3pm) thats alli can remember. I think they did a cat scan that night.

My reason for mentioning this is, if i was having seizures they would have known that night while it was happening right? I am terribly sorry to anyone who has e, my heart goes out to you. If they were psuedoseizures, whatever happened in may and june, was horrifying and i can take the DID diagnosis over e. Its so incredibly scary. I got such extreme anxiety after the seizures, i never felt anxiety that bad.

When i had the seizure in may, i tried to fight it off. I even said something out loud to my fiamce to stay with it, i said "pretty sky" but my voice sounded a mile away. When my head started to feel heavier i just gave in. I leaned my seat back (we were in the car, he was driving since my license was suspended) and i just let it happen really. I was having a panic attack, which is what i believe triggered it and my last thought was "there is no way i can go to work feeling like this" then apparently i stiffened and then collapsed and fell into my fiances lap and while he was driving he had to lift me and hold me up while i wasnt moving, then i stiffened again then collapsed again before coming out of it.

The one in august was much more terrofying with convulsions and such, and i was really anxious then as well, but didnt know what was going to happen so i didnt try to fight it off.

I am hoping maybe they were psuedo seizures and i am in therapy lowering my stress and anxiety with each session so it doesnt happen again, i dont care if i ever get my license back, so long as i never have another seizure

[Perna]

Here's a test that was done at Johns Hopkins that might help you:

http://www.forbes.com/sites/alicegwa...sion-disorder/

It says stress seizures have to do with one's perceived level of stress (rather than actual stress). So, you could work on that maybe?

[PurpleFlyingMonkeys]

thats exactly what we are working in in therapy lol :-) ive known for some time that my stress is too high, that even when things are getting better im always stressing over something. Stresz is my biggest issue at the moment but im trying hard to get over it. Ive never learnt to deal with it in a healthy way, i just always blacked out, but now that im not blacking out during high stressful events, only when i feel stressed over the things that happened, im having to deal with the stress, which i dont know how to.

Im going to check out that link, thank you perna :-)

[PurpleFlyingMonkeys]

Wow perna, thank you for that. 1/3rd of patients! Thats incredible (not necessarily in a good way but is at the same time) it does sound like thats my deal. I have PTSD that has spiked and gotten much worse since having that first seizure. But that first seizure happened because i was taking a psychadelic and got highly triggered during, so i walked away to try and shake it off (we were watching freddy got fingered and when they started talking about all of this abuse it triggered me) so i had a seizure after i just tried to shake off the bad feelings i was getting. No one should do those when they have mental disorders and i knew that but was stupid.

But no one explained psuedos and said it was a bad reaction to the psychadelics (and i of course swore off everything relating to drugs) so when i had the second one it was mentioned psuedo and i was hoping for that and immediately put myself back in therapy.

I feel a great deal less afraid knowing they afe not brain seizures, thank you thank you thank you for that article as it relates more to me than the e articles. I assumed the non epileptics, that you would be avle to remember the seizure, but thats not always the case which is reassuring to me...

So maybe i should get a bracelet until my stress gets betfer that says non epileptic seizures so like mentioned above, they know they dont have to call an ambulance?