Please your suggestions? An odd trip ... - Hughes Syndrome A...

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Please your suggestions? An odd trip to the fish and chip shop?

Mystynzl profile image
8 Replies

Ok...I drive to the fish and chip shop (about 2 km). Walk in,give my order then sit and wait. Then next thing I know there is a man sitting next to me holding my hand asking me if I'm OK!!!....Um as far as I know I was fine.... apparently not. Lovely gentleman stated "They called your order and you didn't respond....they called you again..nothing...I spoke to you and you were staring into space.... I gently nudged you...still nothing...you didn't even blink!...I had been like that for almost 5 mins. As far as I was concerned I was fine....I felt fine. Waited about 10 mins....drove home....LOST THE PLOT and burst into tears telling my husband how embarrassed I was. Then about 10 mins after that got the head ache from hell. I took two Endone and two panadol. Took ages to settle. Should I have gone to the doctor...probably but the only person I trust is my GP....

Has anyone ever had this....or have any idea what it was. I think..'oh my gosh....what if I had been driving????

Any Ideas

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Mystynzl profile image
Mystynzl
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8 Replies
MaryF profile image
MaryFAdministrator

Hi there, no panics.. but you do definitely need a check up, could have been a TIA.. as they can do this. Don't be shy about, let us know what they say. I would go sooner rather than later, and be very clear on your medical history and medication Mary F x

sharonap profile image
sharonap

Could be a TIA or peti-mal epilepsy , when I use to have peti-mal epilepsy my husband said I would just stare into space and would not respond when i came out of it (5 to 15 mins) I would have really bad headache. I had them a couple of times driving(before I knew what was happening) and I had to stop the car, get out and check behind that i hadnt hit anything as i could not rember driving down the road. Dont have them any more was told result of having strokes. I would defiantly get it checked out tho.

sharon xx

Mystynzl profile image
Mystynzl

I will see my GP on Monday...the only ones available don't know anything about Hughes...On a positive note..I have managed to get an appointment with Tim Godfrey in Melbourne...his office have gone out of their way to fit me in..see him on 27 Aug....I was going to Melbourne with my best friend who is a nurse (retired),,so was very lucky.

Melbourne is about 4 hrs flying time away from here in Western Australia.

I am feeling ok today,,,,just very tired.

Vicki (aka mystynzl)

Mystynzl profile image
Mystynzl

Hi Sharon....thanks for the reply...thought i was loosing my mind.....have never felt so embarrassed and ....and scared.

daisyd profile image
daisyd

Hi I have peti mal epilepsy and my symptoms were just as you discribed. I am now no medication and I haven't had one for over a year.

I hate to tell you this but they will probably tell you not to drive.

what medication are you on for the flight eg anti coagulants etc.dont forget to do the usual things including drinking loads of water.

Good luck It may never happen again.

Karen

Mystynzl profile image
Mystynzl

I am on warfarin and clexane injections...and of course i have the sexy tights....

marycath profile image
marycath in reply to Mystynzl

Hi Vicky sorry about the fish and chip fright. so glad that you have the Melbourne appouintment now lfor late August. All the best

Marymac

GinaD profile image
GinaD

I too have had petit mal seizures. Probably not APS related -- but -- who knows for sure? I had anthroscopic knee surgery in 1986 and the surgeon found more damage in there then he anticipated. So my in-and-out surgery turned into an overnight with a shunt to drain fluid. Next morning the surgeon yanked the shunt out (no numbing agents) and about a minute after this pain I heard myself asking the surgeon to stay a bit because I felt very strange. I fell back onto the bed in a petit mal seizure. Now i made the rounds of the hospital getting MRIs, CT scans, etc and so my in and out surgery now turned into 2 nights in the hospital (my youngest was an infant at the time and I was breast feeding. Fun times with the breast pump!) Interviews with family members turned up evidence of a congenital temporal lobe seizure disorder triggered by extreme events (like someone pulling a shunt out of your knee without any numbing agents.)

For the next few weeks I would have zone outs similar to the one you described. But after a month the zone outs went away and have stayed gone ever since -- or at least, I have not had anyone come up to me and talk about how I hung up in the middle of a phone conversation with no explanation, or was unresponsive at a fish and chips or a coffee shop salutation or such.

No meds. I went back to driving after I had been seizure free for 6 weeks.

Good luck. I hope your recovery experience is similar to mine -- in other words, I hope for no damage, no meds no more seizures and a return to safe, responsible driving.

Gina

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