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Hi Nancy

I've been on the Trileptal for about 5 weeks now, I started on 300mg pm for the first week, then after that I strated taking 300mg am aswell, along with the Keppra, it has certainly stopped the Auras/Simple Partial Seizures, and that yesterday was so unusual, and so very unprovoked, all I am worrying about at the moment is my forthcoming MRI scan on appropriately enough Halloween, but once I'm out of that claustrophobic tube, we are off down to the south coast to see my dad and his partner, so I'll have that to look forward to.

I'll keep you posted, I was thinking of putting a thread out about suggestions for things to focus on when I'm in the scanner, any ideas would be very welcome, I once just laythere, shut my eyes, and pretended that I was standing in front of the Pyramids and Sphynx in Cairo, or on top of Mount Sinai in the Red Sea mountains, I really do have to shut out where I am and what's happening, I know it's crazy and no harm can come to me, but I just hate it!

Thanks for your support, if my determination can help others, then bring it on!! I will get this book published, I only want to stop others having to go through all this crap!! especially in the workplace, what is so wrong with having epilepsy for Christsakes?!

Keep in touch, and hope to chat again soon!

Lotsalove

Elaine x
 
Elaine ~ When all this MRI stuff started for me - July 2005 - I was just a few inches from hysteria so my neuro sent me to one of those "open" machines - yeah, sure, you betcha.

After that showed the tumor I started having MRIs taken over and over almost non-stop in the big, closed machines. I "learned" to ask the tech to talk to me. I told them I was scared and needed them to tell me what was going on, when.

They wanted to help and talked .. "Nancy, this bit takes about 2 minutes, hang on"..... "OK, Nancy you did great. This next batch is easy and takes just 90 seconds. Here we go"......."Nancy, this is a big one coming. Three minutes of loud stuff. Hit that buzzer if you need to."......."Hey, ......... and so on.

So I learned to try to keep count of "three minutes". I counted instead of paying attention to what was happening. I did that so much and so HARD that now I just fall asleep. lol

Do the ear plugs and music ear phones help at all? Tranquilizers? Your fireman sitting to hold your foot?
 
Durring MRI's I sleep.LOL Elaine, I work with kids out here in the states. It seems to me you have so much knowlegde that you would be great.They are so worried about liabilities. I volunteered in the same district for so many years that they know me now. But I don't think they would hire me in another district. Is it that way for you? Could it be who you know?
 
MRI? I've been in those machines so many times they
bore me to death! I'm serious! I fall asleep in them and
the Techs wants me AWAKE! They've stopped a couple
times before - because I was ... umm... "snoring" ...
*laughing*

:embarrassed:

So now they schedule me in early in the mornings after
I have slept all night or before lunch, so they know I
won't fall asleep in those machines! *laughing*

Only twice I had a seizure during a special type of a MRI,
and after a regular MRI and with contrast MRI; 2 different
years - both times they were going to have me admitted
to the ER, but I ended up going home. One seizure was
actually captured on an MRI, but the other one was after
the MRI was done and they were going to get a hold of a
Doctor to get a Doctor's orders to have me rescanned
immediately but was unable to get a hold of one.

MRI's are nothing - I've been in both - TUBE and OPEN
(aka Donut as some Techs calls it) and really it doesn't
matter with me what type of machine it is, but I can assure
you this - IT DOES NOT HURT!

PS: I hope you feel better and soon!
:)
 
Mine only hurt when I had the b-cells. So the techs give me a button to push when I go in. When the cells were gone no pain. I have had all those tests since I was 10. Pain in the butt was all I could think of lol.
 
I have

an MRI EVERY year........BLECK. I am not AFRAID of them, I just don't like them. Given the choice......I opt for the open kind, every time. Funny thing is, I'm not even claustrophobic. They just give me a HORRENDOUS headache.....
 
Don't they give you ear plugs? Or doesn't that help? They can give you a sedative to.If you talk to your doc. I have in the past, and for my son.
 
Nope, no

ear plugs. And no sedative.......doc won't allow it. I'm only allowed to have a sedative in a few, rare instances, and MRIs don't fit that bill, unfortunately....neither did having 3 babies.....
 
Hi There

Over the last 25 years I have lost count of the number of MRI's I have had, they didn't used to bother me, and I so KNOW they don't hurt!!!! I have claustrophobia!! To be shut in that tube is NOT natural!!! I have a fear of choking aswell, so the fact that you are shut in somewhere on your back, is so not right!

I am going to pretend I'm back in Cairo in front of the pyramids, or on top of Mount Sinai watching the sun rise, that was totally awesome!

I'll let you know how I get on, but this must be at least my 10th MRI, still terrified!!!!!!!

Cheers
Elaine x
 
Hi Honey

Thanks for your support, very much appreciated, like I just said to Nancy, it's crazy with the MRI, I know that no harm can come to me, I must have had at least 8 MRI's over the last 25 years, but I hate being shut in anywhere, and I've always had a fear of choking, and when you are lying on your back it's a possibility, but I'll let you know how it goes, thanks again for your kind words mate, and I so hope all is well with you?!

Lotsalove

Elaine xx
 
Elaine H said:
Hi There

Over the last 25 years I have lost count of the number of MRI's I have had, they didn't used to bother me, and I so KNOW they don't hurt!!!! I have claustrophobia!! To be shut in that tube is NOT natural!!! I have a fear of choking aswell, so the fact that you are shut in somewhere on your back, is so not right!

I am going to pretend I'm back in Cairo in front of the pyramids, or on top of Mount Sinai watching the sun rise, that was totally awesome!

I'll let you know how I get on, but this must be at least my 10th MRI, still terrified!!!!!!!

Cheers
Elaine x
Click to expand...

(((Hugs to you Elaine))). I have Claustrophobia as well. I have never been in an MRI tube head-first or had my head in the "hold-still" clamp/cage. I just can't do it. It's odd, I'm not afraid of elevators, etc. But I do not like anything that makes me feel as though I'm in a casket.

I even take Lorazepam before I get in an open MRI! The open MRI near us is like a sandwich machine...they slide me between two huge round pieces of metal. The piece on top is about three inches from my face. I lay a cloth over my eyes. Someone usually sits in the room with me and holds my hand and talks to me.

Like you, I'm not afraid it will hurt, and the noise doesn't really bother me. For me, my claustrophic fear is almost paralyzing. :paperbag:

I am definitely thinking and praying for you Elaine. Picture your beautiful sunrise, visions from your travels, places you want to go, or simply lay there and make a dinner menu (I did that once) ;) Anything to help take your mind off of where you are at.

Take care and big (((Hugs))). :e: -Julie
 
Or you can count backwards. I do it from a thousand and lose count and keep starting all over again. Before ya know it. It could be done. I don't know what to say, That just sucks. big hugs.
 
Hi Nancy
I've been taking the Trileptal for nearly a month, so I guess I'm still getting used to it, but it has certainly stopped my auras thank God!! This is the worst part of having epilepsy as far as I'm concerned, although today, I've had a couple of Complex Partials, luckily I've been with Mark on both occasions, so he looked after me, but although they are embarrasing, I'm not "there" if you get my drift? during an aura/Simple Partial, I'm well and truly "there" and they terrify me!!

I'm still smiling though, and I have nearly finished my book, so all I have to do now is get it published, wish me luck, and keep in touch won't you?

Lots Of Love

Elaine x
 
Elaine -- Thank the Lord I'm not having seizures after my surgery but when I was --- I missed those auras when they stopped.

Oh how I valued the auras so I knew a seizure was coming.
Yes -- some of my auras were pretty spooky but when they stopped and those black-out seizures hit without warning...
I missed those auras.

But I was always completely alone. Husband felt like he had nothing to do with any of this "stupid stuff" and paid no attention.
 
Hi Guys

Just to let you know the latest with my employment predicament. I saw the lady at the Job Centre who deals with employment and disability issues, she was appalled at the way I am being treated, she agreed that they should have kept me informed as to what's going on, and just kept in touch.

The next step is, there is an organisation that is part of my local county council called Employment & Disability Services, they have all the details of this situation, and will now be in touch with the school to see what can be done to resolve this problem, to be honest, I really don't want to go back, I'm sure you can all understand that, I'll be embarrassed to walk into the staff room, I have applied for a couple of other jobs so who knows? Hopefully, this can be sorted out, and I'll get back to work, I don't have to stay there do I, and it will help pay the bills until I find something else.

I'll keep you posted as to what happens next, and to anyone else going through a similar thing, be strong, be proud!! Thanks for everyone's support and kind words.

Lotsalove

Elaine x
 
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