Awaiting diagnosis

Chel

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Hi, I'm new here, and don't yet have a confirmed diagnosis. A pocket history...

10 months ago at the start of a 9 wk migraine, I had an episode of aphasia and dysphasia. When I eventually told my doctor (3 wks later) he sent me to hospital as a suspect TIA, they ran a CT and found temporal lobe atrophy, but no evidence of TIA. Another week later, the migraine was still with me, so an MRI to follow up, and still no answers re the migraine.

The migraines (I thought they were "just" headaches) had been with me on and off for a couple of years by this stage, so mea culpa for ignoring them. I also didn't recognise the visual disturbances as "auras", or as I now believe, seizures. I was started on Endep for the migraine, with little effect, other than to make me drowsy and obnoxious.

Alongside this, I was found to be in peri-menopause, and my brain stopped. Dead. I don't know how I kept my job, but I did; thankfully my neurologist and gynae combined to get me onto HRT and save my sanity and my career.

Massive memory loss and reduction in cognitive ability in this time. There were times I couldn't work out how to tie my shoe laces, so bought slip on shoes (with elastic sides). I couldn't work out how to spell my own name. It's been a nightmare. Words out of order - honestly, it was like being a dementia patient. Frequent aphasia and dysphasia.

Meanwhile, my brain was like an electrical storm, with fireworks going off day and night - visual and aural. I had been switched to topiramate in the meantime, which was doing a better job of controlling the migraines, but not the "auras/seizures". I could write them out, but that's a bit like War and Peace. Jerking of my left arm, head, left leg if I eat crisps, the electrical storm mentioned above, pretty sure I've been seizing in my sleep (if I sleep at all), I was only getting about 2 hrs sleep a night, and so on.

I did find a food trigger - chai tea. Have been off it for about 6 weeks now, and my auras/seizures are down to almost nil. My main aura is low-grade "white noise" (visual).

I had an EEG last week, and during the strobe test my teeth chattered, my hands twitched and I think my head moved around. I get the results in two weeks. I was going to Las Vegas (in order to visit the Grand Canyon) in three weeks!!! I'm guessing Las Vegas is out...

It's been a long road - through the TIA suspicion, down the dementia path, and now epilepsy. At the end of the day, the CT and SPECT both indicate moderate temporal lobe atrophy (I'm 46, btw), so it seems to me that TLE would fit the profile.

Cause for the atrophy is unknown, although I'm IgA deficient, so it's possible some infection at some point has gone into my brain. I'm also a coeliac, so there could be a nutrition component.

Chel
 

huskymom

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Welcome Chel!

Sounds like you have been through quite a bit! I have my fingers crossed for you that you will be able to make your trip. Just avoid the shows that use strobe lights (blue man group). Best wishes!!
 

Chel

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Just avoid the shows that use strobe lights (blue man group)
Thanks! But... can you explain that to me? What do you mean "blue man group"? If I only need to avoid the shows, and not *all* the flashing lights in Las Vegas, maybe I can go after all... LV isn't the attraction - it's just a means to getting to the Canyon.

cheers
Chel
 

Nakamova

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Hi Chel --

There's a link between celiac disease and epilepsy. One reason may be that with celiac disease, fats and certain nutrients (like magnesium) are poorly absorbed, and the electrochemicals in the brain become out of whack. You might want to check out the different diet posts here at CWE to read about people who have made nutritional changes and found that it helped with their epilepsy.

"Blue Man Group" is a Las Vegas show featuring, among other things, performers who are painted with blue body paint. And flashy lights. But if you are just going through Las Vegas enroute to the Canyon you won't necessarily get exposed to all the lighting. And you may not be photosensitive. If you are, make sure to have sunglasses with polarized lenses -- they can help.

Best,
Nakamova
 

Endless

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Chel,

It sounds like you've been through a really rough road. I'm so sorry.

I'm glad you found us here, though, so WELCOME!!!

The aphasia and other mind problems could be due to menopause, seizures, or migraines. Both seizures and migraines also have auras. But movement in your limbs sound like seizures to me.

I have temporal lobe epilepsy. It's pretty freaky. Weird sounds, smells, sights, as well as a host of other types of seizures. Everybody has their own set of seizures - not everyone has all kinds. (I have "Alice in Wonderland Syndrome," Deja Vu, Jamais Vu, fear seizures, euphoria, etc.) I think the reading in here about what different types of seizures is superior to other sites. Folks have described things in greater detail.

To use the search feature, go back to "Our House," and near the top of the page there is a "search" feature. Search on "temporal lobe epilepsy." You may recognize yourself. Most people have a lot going on, and they just never knew all the strange stuff was seizures.

Hang in there. Things will get better. Most people, when they are on the right meds, have great seizure control. Also, as has already been suggested, pay attention to your celiac's disease and eat right. It could be triggering seizures.
 

huskymom

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You should be fine if Vegas is only a means to the end. (Grand Canyon)! Vegas is beautiful too in its own way. If you want to avoid the lights, tour the strip during the day :banana:
 

Chel

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Thanks for the great info, everyone.

My gluten free diet is under control (10 yrs now), and my neurologist started me on the "mind your mind" diet program of nutritional supplements earlier this year. It includes magnesium, vits b, e, folate, omega-3 fatty acids, and anti-oxidants. I was already on the magnesium for my migraines. "Mind your mind" is an Altzheimer's Australia brochure. Of course, I have to watch that all these supplements are gluten free, or it all goes out the window (or elsewhere *wink*).

I was surprised to read on one very comprehensive site about TLE, how many of my symptoms fit. I've been hearing sounds "dip" (muffle) for quite a while now, and didn't realise that was an aura. Similarly, that feeling of walking along and suddenly you feel two feet taller (out of body?). I didn't know my little energy bursts in my arm and leg were simple partial seizures - I thought I simply wasn't get enough exercise (a truth in itself). I don't think I've ever had an olfactory aura, although I do sometimes smell something burning before others - they usually smell it after I do.

I will certainly avoid "Blue Man Group" and Vegas at night - thanks, huskymom and Nakamova; and will explore the "Our House" feature after work tonight, thanks Endless.

I can't wait to find out what is really wrong, because there is certainly *something* wrong. And it seems to me you can't have moderate temporal lobe atrophy and not have it affect you. The menopause certainly hasn't helped, as it's harder for the messages to find a brain cell to hit, when there are fewer of them. Thank you, HRT, for oestrogen is the key to renewing that pathway.

Anyway, thank you for the warm welcome, and I shall continue my exploration of this wonderful site this evening (my time). All the medical websites in the world are no substitute for the personal experiences of those affected by a condition, as evidenced by the coeliac support group I belong to.

Cheers
Chel
 

Chel

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I should add that when I say my gluten free diet is under control, I know I still have dietary triggers that aren't yet identified.

One is clearly in the crisps I ate the other night (gluten free/wheat free), which led to leg twitching and increased "white noise".

I haven't eaten anything with msg in it for a couple of years, but it knocked me flat for two days last time I accidentally ingested it (it's derived from wheat, so I avoid it). I read that someone else mentioned it on this site as a trigger. I know what the answer is - prepare food from scratch, from all raw ingredients - but I'd have to learn how to cook!

Looking forward to learning more about triggers.

Thanks
Chel
 
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hi chel.....and welcome.
I would love for you to describe your visual episodes. I too have a lot of visual snow, lightening shows, star wars like star showers.....but I haven't been able to fine anyone that has the same or similar experiences as me. Sometimes I see bubbling water (like in a brook) or flower like patterns that change....like looking through a kaliedoscope.
Hope you get answers soon.....I too have had years of migraines before being diagnosis with epilepsy.
 

Chel

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hi chel.....and welcome.
I would love for you to describe your visual episodes. I too have a lot of visual snow, lightening shows, star wars like star showers.....but I haven't been able to fine anyone that has the same or similar experiences as me. Sometimes I see bubbling water (like in a brook) or flower like patterns that change....like looking through a kaliedoscope.
daisy.girl, you have described my visual episodes almost to a T! I was admitted to a major hospital a month or so ago (supposedly to be reassessed, but ended up only having migraine protocol), and described the kaleidoscope effect to the young doctor. I suggested he had probably never seen one in his young life ;-)
Yes, to the Star Wars warp-speed effect;
an effect which is like waves of colour rolling in (always from right to left - don't know if that is significant);
varying levels of "white noise" interference;
shooting stars (coloured - have always been able to get rid of those by drinking water);
loss of left field of vision;
distortion of shapes (square/rectangular shapes have their opposite edges pulled out - can't think of the term, circles become ovals);
and non-visual - feeling like my brain is being "pulled" by a magnetic force.

I'm sure others will come to mind after I post ;-)

The mention of the blue man show in Las Vegas has rung a bell... For a while, something about my work computer monitor bothered me, but I couldn't figure what. Then I covered the electric blue "on" indicator, and my brain heaved a huge sigh of thanks. The blue light is a trigger for me!

I haven't even been here 24 hours, and I'm learning so much! You guys are great!

Cheers
Chel
 

neilB

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Argh, I've seen the "kaleidescope" a few times (maybe 3) and each time I was worried that "it" was going to happen but never did. Each time was in the morning so I kept thinking it was just being tired. I constantly hear the noise in the ears "tinnitus?" but I have a neuro appt. next week so we'll see. Hang in there Chel!
 

Nakamova

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Neil --

Have you considered taking a magnesium supplement -- it has a good track record with tinnitus, esp. with folks with epilepsy. (Ask your doc first about taking any supplements of course.)
 

neilB

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I take Magnesium everyday. I'm learning just to get used to the noise in my head lol.
 

Bernard

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Hi Chel, welcome to the forum. :hello:
 

RobinN

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Chel -
Welcome.
My daughters brain was out of control there for a while as well. She even went through three months of retrograde amnesia. Very scary time. Seems things were much worse when taking meds so I made the decision to take her off of them.

We have been also making nutritional changes. Though I do wish she had immediate responses to her poor choices like you do. She also takes daily supplements. One being magnesium. May I ask what kind you take and how much? I take it as well. It has eliminated a 30+ yr history of migraines. I have been migraine free for over 5 yrs.

I am glad that you found CWE.
 

Chel

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Magnesium

May I ask what kind you take and how much? I take it as well. It has eliminated a 30+ yr history of migraines.
I was taking Mag Cell (chelated minerals from BioCeuticals purchased from my acupuncturist), but stopped seeing him a couple of months ago, due to work commitments and time constraints.

I'm now taking a generally available brand of Magnesium, which states on the label:
Magnesium (as oxide heavy) 295mg
Magnesium (as amino acid chelate) 30mg
Manganese (as amino acid chelate) 6mg
Vit B6 (Pyridoxine Hydrochloride) 60mg

This is only part of my migraine management program, along with the topiramate. Have doubled the latter this week from 100mg once per day to bid, as it wasn't controlling my migraines, and I've had two recent admissions (would have been more if I could have driven to hospital, but I usually manage them at home).

I'm not sure what is controlling what, at the moment, but my migraine pain is certainly under more control than it was - it was near-constant a year ago (about 90% of my days). I'm very grateful to be rid of the pain.

I'm glad I found CWE, too :)

In my reading last night, I was reminded of some of my other symptoms, among them both hands spontaneously going numb, and random lack of ability to detect hot/cold (have had some minor burns doing the "touch test" on my cooking). So much familiarity in what I read here...

Cheers
Chel
 
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Chel,
When do you see your neuro again? any results from your current EEG?
Hope your feeling better.
 

Chel

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Chel,
When do you see your neuro again? any results from your current EEG?
Hope your feeling better.
Hi daisy.girl

I see her this Thurs, when she will give me the EEG results.

Unfortunately I've had a challenging week with my health, so am looking forward to some answers. I fly overseas in a week, and have no plans to fiddle with meds until I return.

Thank you for asking :)

cheers
Chel
 

Endless

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Hey, Chel,

My visual auras kind of look like a mandala. This is sort of like it, but not it exactly.
http://www.greenlion.com.au/mandala.jpg

It moves from the center outwards, constantly regenerating itself. I know it's in color, but never really remember which ones.

Oh, WOW. I just found the exact thing. It looks like fractals. Check this out. http://www.google.com/images?rlz=1T...esult_group&ct=title&resnum=1&ved=0CB8QsAQwAA

Here's one that is the closest, except for in mine the lines are straight not curved, and the lines are further apart in mine as well:
http://www.abstractdigitalartgaller...n005-abstract-digital-art-fractal-Psytrip.jpg
 

Chel

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My visual auras kind of look like a mandala... It looks like fractals...
So many of those fractals look like my visual auras. They were great links, thanks Endless! Mind you, they made me nauseous LOL Pretty, but, um, no thanks!

You know when you play music on the computer, and it generates it's own visual? I can't watch those either. I'd always put it down to my sight convergence problem, but maybe it's my brain...

Thanks for sharing the links!

Cheers
Chel
 
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