Feeling lost

[Joe]

I live in Portugal, my Portuguese is not brilliant, my neuro is Portuguese, his English is not brilliant...a recipie for disaster? I am scared! I have had 'lost time' experiences for as long as I can remember (which is not always as long as I would like, or think, it is!?!) so that would suggest absences (?), but Keppra is not, from what I have found out, especially suited to such szs? How the heck will I know if they're getting better...sometimes I'm aware of them after the event, but often it's what other people say...or, just that I have no recollection of those moments - but who can remember every moment that happens (or doesn't????)

Audio visual hallucinations (hallucination may be too strong a word but I can't think of another - I seem to be losing the ability to find words...I know I'm looking for one, but what is it...???? This is horrible to me - all I have are words (I was an academic and writing is still how I define myself as a person...without that I cease to be....sorry, getting side-tracked...confused...)

The 'hallucinations' are always peripheral - someone there at the corner of vision, shadows, sometimes lights, colours, a halo of floating tone/tinted light. Audio can be distinct (a recognisable sound) but more often indistinct - a sound for sure, repeated, but not identifiable esactly - metal lightly tapping metal, tinkling, but when try to focus on it it goes, or, slips from focus (I know there can't be a sound as I have 2 dogs, one of which will bark at anything she hears at all (and I'm sure stuff she doesn't actually hear hehe bless).

The only way I can think of describing them is it's like something that constantly is there (when happening) but elides perception - this will sound silly, but in the Hitch Hiker books by Douglas Adams there are the Wikket robots of Krikket who can only be seen if you try not to see them...it's like that (this sounds ridiculous in English, how to get this across the language barrier..)

I also, apparently, will absently pick at my hands/fingers, or my leg will tap very noticeably to everyone else, but I have no knowledge of it until it's pointed out to me - always my right leg I think - or a 'parkinsons' kind of shaking of my right forearm/hand (I hope this is not considered offensive, it's no other way to describe it, I'm sorry). These are always pointed out to me (like the 'he's gone', 'he's off', 'what are you thinking?' - the answer is nothing, or didnt know I was....

I don't get migraines - never have done (though my dad suffers from them occasionally) - but I have frequent dull headaches, always behind the eyes/forehead/left side of head - I never take paracetomol for them (1. I hate taking pills, 2. they don't work - aspirin is not an option, I have asthma and am allergic to it)...

Shit...this has rambled on long enough, I'm sorry, I'm just so confused is this any different to what is normal for everyone...????????:-sad:

 

[skillefer]

Nope, what you're going through isn't unusual. I had a friend who would rub her hand on her thigh when she had a seizure, and kind of stare off into outer space. Her seizures only lasted between 15 seconds and 2 minutes. So really, they weren't that bad. She also lost time. I asked her how she knew her meds were working, and she said that because she had such a rigid schedule, which usually had her interacting with other people, she usually found out from them if she did have one. Ask your neurologist for an MRI and EEG. It will hopefully help diagnosing exactly what is going on. And don't worry about rambling....That's what we're here for. Right?

 

[RobinN]

Joe - really so sorry that you are having to deal with this. My daughters are tonic clonic, so I guess that is what makes them different. She does lose time though. Many hours before and yet we have the TC to show for the reason. She has never exhibited any other type of seizure activity.

Somewhere on the forum I wrote about the time when she had amnesia. She lost her total memory. Luckily it only lasted for two months, but for that two months she has no recollection. Just goes to show how complex the brain is.

Any chance you can use a translator when you go to the neuro?

 

[Joe]

Thank you...I've already had an MRI - all ok - and an EEG - also normal...where does that leave me?

tHAT'S WHY i'M WORIED - DO i REALLY HAVE e IF EVERYTHING IS NORMAL AND OK, BUT WHAT THE HELL IS/HAS BEEN GOING ON - oops, sorry hit caps lock by mistake (I'm not shouting) :huh:

:egg:

 

[RobinN]

Lets forget the label... You have to ask yourself if everything is OKAY.
Something is happening and it could be happening for a lot of different reasons. Some of what the tests can't pick up on, and some from other activities in the body.

Sounds like seizure activity to me, but heck... what do I know.

 

[BuckeyeFan]

Normal EEG

I have had some normal EEGs as well, but still had tonic-clonic sz. Other EEGs have shown the spikes indicative of epilepsy.

Point is that E does not always show up on an EEG. It can verify that you have E, but it can not be used to rule it out.

This is based on my personal experience and research. My neuro said that the meds could give me the normal EEG as well.

Best of luck to you.

 

[Bernard]

Hi Joe,

It's entirely possible for people with seizure activity to have "normal" EEGs. It just means that no seizure activity was captured at the time the EEG was taken. It doesn't mean that epileptiform activity isn't occurring.

Do you have a wife/girlfriend/partner/friend/family/etc. who is close to you? Someone who might be witnessing your absence seizures? If so, I would recommend asking them to go with you to see the doctor. I find that I am often able to describe things to Stacy's doctor that she cannot (because she isn't aware of them - some seizures involve loss of consciousness).

Your "hallucinations" sound like simple partial seizures (also known as auras or sensory seizures).

I recommend EEG neurofeedback if you can find a practitioner in your area. My wife completely eliminated her multiple, daily absence seizures with it over ten years ago (with about 5 months of sessions).

 

[RobinN]

Joe - my daughters first EEG soon after her first TC seizures showed abnormality.
The second third fourth, and VEEG showed up normal. Her focal is in the right front lobe, which I am told is difficult to get to register on an EEG, but then again if the seizures are for other reasons, perhaps there wouldn't be an abnormal reading. Most abnormal readings have to be during an active seizure. None have ever been caught on tape for Rebecca.

Sure is darn frustrating.

Bernard, is there a neurofeedback forum? Are there others that have success stories?
You say that absence seizures have been eliminated, but I want to know about TC seizures.

 

[Bernard]

Bernard, is there a neurofeedback forum?

Possibly. I looked around a long time ago and didn't find any that were active.

Are there others that have success stories?

Yes. I'm trying to get people to post in the History Book when I run across them, but as you can see, not too many have done so yet.

You say that absence seizures have been eliminated, but I want to know about TC seizures.

Stacy eliminated all her seizures - absence, TC, myoclonic jerking, SPS, CPS - with the original EEG neurofeedback sessions. She then went 4 years med free and 100% seizure free. She started having TC seizures, atonic seizures (drop attacks), myoclonic jerks and "small" CPS again after delivering our first child. Her seizure activity has gone haywire with each successive pregnancy, but the absence seizures have never returned. I firmly believe that had we not started a family, she would still be completely seizure free today.

 

[1096]

i think the shaking sounds like anxiety/nervous tension.
the hallucinations... i had a similar experience (from marijuana use), it lasted 2 years.
do you smoke pot? if you do, i'd say it's probably the cause. if not - don't! trust me it will only enhance the light plays and the anxious 'tapping' will eventuate into full blown panic attacks.

eat well & exercise.

p.s. imo MRIs/Cat Scans etc are pointless for many of these sorts of things... An uncle has bipolar--nothing shows up on the mri. I had similar symptoms, mri and catscan didn't indicate anything. So it's understandable about that.

But nothing showed up on the EEG? Get off the wacky backy

 

[RobinN]

I am being questioned as to whether or not this needs to be continued for life. It is this friends assumption that it only tends to work when you are activing involved in the treatment. That is not how I understand it, but then again I am hearing most of the info from only two sources, and one is the practitioner.

 

[Bernard]

The results are largely permanent. Stacy didn't have any follow up sessions during her 4 years being seizure free (even though her practitioner recommended follow up sessions 1/month or so).

I say "largely" because there is always the possibility for something traumatic to throw the system off track (pregnancy in Stacy's case).

 

[Joe]

Wacky baccy...as if I would!:roflmao:

I did when I was at university, but that was many years ago now (unfortunately...getting old onder

The hallucinations preceed that time, got no worse during it, and still carry on now - though I fully acknowedge that previous drug use (pot and very occasionally coke) was not (in hindsight) the best - of things for me to do. Mea culpa!

I smoked at weekends and coke was perhaps once a month - did that for 3 or 4 years - but no coke since 1996 and I have not smoked since 2002.

So...self-inflicted?? Deserve to take my medicine then!:e: