Going Nuts

[Zoofemme]

Okay...I don't know whats going on but it is driving me batty.

Since the dr. said my smell thing is actually seizures I've started paying attention to it and writing it down. Today it is out of control and...it...won't ...stop. All morning it has been burnt popcorn and something akin to melting crayons/ singed erasers. They are lasting about 45 seconds and they are coming in groups of 4-5. I get a brief reprieve for about 10 minutes and then it starts again. I've got a bad headache now and it is really starting to stress me out. I've never had it quite this bad that I can remember...maybe 3 or 4 times in one day but this is getting ridiculaous. I've washed dishes, cleaned the cat-pan, taken, the trach out,thrown the dogs outside and taken a shower...trying to get rid of anything I can think of that might be throwing me "off". I still have to koos dinner and at this rate it is going to taste like crap with my nose out of whack...

ANy suggestion?

Thanks!

[nightfighter]

Hi zoofemme,

I get smells all the time and when I do I know it is going to be a long day.
The most painful feelings for me after is definitely abdominal pains.It takes about an hour and a half for taste and smells to return back to normal.Drives me nuts.usually experience the following after smells,-visual disturbences,caleidascope eyes-nausea-confusion-headache-diziness-loss of balance-severe abdominal pain-shaking(as if too much coffee.)-leg pains-cold sweats.Do you experience anything similar?

[Zoofemme]

Weellll...I was shaking terribly this morning but I attibuted that to being extremely cold. I've been battling feeling abnormally cold for the past few months. Had a thyroid panel done but that turned out normal so the dr. didn't knwo what was up. I have temporal lobe epilepsy and I didn't think cold or shaking was associated with it???

[nightfighter]

Perhaps just a med side effect.Its hard to tell when there is so many variables.Between meds and what normally goes on I find it difficult to distinguish these things.

[matchu]

Hi zoofemme,

I get smells all the time and when I do I know it is going to be a long day.
The most painful feelings for me after is definitely abdominal pains.It takes about an hour and a half for taste and smells to return back to normal.Drives me nuts.usually experience the following after smells,-visual disturbences,caleidascope eyes-nausea-confusion-headache-diziness-loss of balance-severe abdominal pain-shaking(as if too much coffee.)-leg pains-cold sweats.Do you experience anything similar?

I get a weird not quite sour smell, but sort of a raunchy smell. is this similar to the smells your getting. I would be interested in hearing about it, you maybe able to describe it more accurately, but it would be very interesting if it were the same type of smell we have.

[Rae1889]

I smell so many things its hard to tell when its not there.

I smell burning rubber or erasers frequently. I also smell peanut butter, sour milk, oranges or grapefruit, lilac, laundry, and electriccal. That ones weird but it reminds me of dead batteries but hard to explain.

I smell paint, permanent marker, welding, gasoline, and wood burning.

That's just the ones I remember. I ALWAYS ask If someone around smells what I smell because I never know.

[Endless]

Well, I mostly smell bad stuff like hair burning, rancid dog poo, lithium batteries (sort of), formalehyde-like smell, something incredibly bitter I can't describe, electrical fire, and once in a blue moon I smell incredibly intense pine cleaner. That last one isn't so bad, just rather baffling. Oh, and ditto on the permanent marker, but with a little paint solvent thrown in. Before my diagnosis of epilepsy I thought it was a migraine aura. Whoops my mistake.

I also get killer headaches afterwards. I do after most seizures.

I relate to one after another. I've been posting the last couple of days about either a really long seizure, or seizures in serial one after another. Ugh.

If it doesn't stop, call your doc. He/she needs to know.

[Zoofemme]

My husband bullied me into calling my neurologist when he got home...he said what I was experiencing wasn't normal for me, lol.

The neurologist thought I might be experiencing migraine aura and told me to take a couple of tylenol and drink gatorade It definitely wasn't a migraine...wrong pain and I have NEVER had a migraine aura in my life. I had already drank enough water to float a cow per her previous instructions. I just left it at that and didn't argue with them. The smells stuck with me all night and so did the headache. I woke up this morning and both were gone (fingers crossed it stays that way).

I cannot stand sports drinks and the neurologist is insistent I drink them when I have a headache because of the electrolytes. I would rather drink topomax-tinged cola than gatorade. The nasty stuff make me wretch and honestly, I can stay hydrated drinking water. Is there some electrolyte supplement out there that DOES NOT contain any type of artificial sweetener whatsoever or any salt and doesn't taste like gatorade, powerade or any of those other "ades"?

For what its worth, my "smelss" are usually burnt or singed things...recently popcorn and sugar have been popping up frequently. In the past stale french fries and vomit were the ones I smelled the most, dog poo has been in there, stale urine, chocolate...the other day I was smelling some weird flower scent and it was really bothering me. I kept doing the "can you smell that" to my husband...turned out it was my deoderant. I grabbed the wrong scent by mistake

I have to say, this is the first time this neurologist has disappointed me but I guess disappointment is to be expected. You can't have it all hunky dory all of the time, eh?

[Nakamova]

There is an aura/seizure associated with smells. You might want to check out this thread:

Burn smell aura PERSISTS ALL DAY!! How many with SPS have same??

[Endless]

Zoofemme,

You can get "rehydration salts" at some drugstores, and most don't have added flavor. You mix it in with juice. It still tastes kinda nasty. It's the salt in it, so nothing can improve that.

I keep it in my travel first aid kit for heat exhaustion and dehydration in hot climates. It's easy stuff to find in pharmacies overseas, but it's rare to find in a drugstore in the U.S.

REI is one source

Chinook Medical Gear is another source, and is about the cheapest.

[occb]

I get a weird not quite sour smell, but sort of a raunchy smell. is this similar to the smells your getting. I would be interested in hearing about it, you maybe able to describe it more accurately, but it would be very interesting if it were the same type of smell we have.

We normally record the smell as smelling like burning garbage. I dunno if nightfighter has more to add to that description (probably though, if I know him)

I've been reading your posts, and there are a lot of similarities between your experiences and his. Chances are it is a very similar smell you two get.

[Zoofemme]

Thanks everyone!

Nakamova...the dr had said at my last visit that aura/sizures were what I was experiencing. It was one of the "odd" things that have been going on for years that I alsway thought were just weirdness. Never had a headache with them before, never had them last that long before. Hope it doesn't happen again...

I just got off the phone with my neurologist's nurse. She called to follow-up with me and make sure I was ok and see if I was still experiencing the stuff. If it comes back I'm suppose to call them. They have got to be rolling their eyes over me by now...I've never had to call the neurologist this much before

I don't know what to do anymore...some does this tuff scare the crap out of me. Its like it is morphing into some totally new beast and I don't know how to cope with it. Now I'm having seizures I've never had before, an increase in seizures I guess I've had for a long time and then there is always the granddaddy beast lurking around the corner. I try not to even think about those for fear of provoking one. The the meds have their host of issues and it seems like every time I turn around those are getting changed because my "levels are too low"

Of course, then I come to the question of WHY. Why now after all this time? I beat myself up over that one. The dr said stress after I explained my job to her and everything that had been going on. That didn't make sense to me though. I did have a t/ c seizure back then but my next one was 4 mos later. Now, that second one, I hit my head pretty good when I went down. I ended up with a goose-egg the size of a goose-egg. I didn't have a concussion though...no nauseau, vomiting, uneven pupils or dilation so I wouldn't let DH take me to the hospital. I've second guessed myself since then though and wondered if I didn't screw up They changed my meds, that one is plausible too but for the fact my problems started before that and the med change was in reaction too those problems SOmething had to have occurred to cause this kind of upheaval but what?

Can you tell I don't like unanswered questions? I'm a troubleshooter by nature and it has always been my job in some form or another

[Nakamova]

I know -- e is like the ultimate troubleshooting puzzle. I so much want to figure it out, and make everything right again.


It can be more than one factor that causes seizures to change, which can make it extra-tricky: Meds/Stress/Walmart/Aging/Weather/WhatYouAteForBreakfast/PhaseOfTheMoon/WriteInYourTriggerHere...