just lately ive been having the strange feeling's i get before ive had seizures but it doesnt progress into one. Had one today and feel really tired.
also on medical record it states Multi Bilateral Basal Ganglia and Status Epilepticus.
Not sure where these will lead to healthwise.
What did the doctor say? They are probably mild seizure or increased risk.
What is different? Sleep? Weight? Stress? Meds? Health?
Hi thanks for replying.
I'm seeing my neurologist on Monday 24th october to find out what exactly is going on in my brain.
The aura I had a couple of days ago left me feeling tired and with increased weakness in my right leg. It seems to be an everyday occurance now, happening late in the afternoons. Most of the time it feels like my whole body is trembling. The fluid in my middle ear, which ive had for 2 months now, isnt helping either as im constantly disorientated.
Hope you are well.
Dawn
Hia there. My neurologist said that auras are actually a kind of mild “partial seizure”. If the unusual brain activity doesn’t fizzle out there it spreads and becomes a generalised seizure.
I don’t know what Multi Bilateral Basal Ganglia is but Status Epilepticus is where you go into a seizure and don’t usually come out or it unless you’re taken to hospital and given an injection to stop it. Obviously very frightening and dangerous because if it is left untreated it can cause a heart attack.
Get your questions ready for your neurologist to unpick what they all actually mean in your specific case. Last time I had a consultation I had 3 pages of notes before it with things I wanted to say and to ask. Hope this helps.
Hi thanks for replying.
My neurologist has never heard the word "Aura" and when i told her I was having regular aura's, she looked at me as tho i had two heads!
With the 3 seizures I've had, each time it's taken me a while to wake up, second time i woke up the next day, but i also had a sub arachnoid Haemorrage at some point during second seizure.
Your reply has been helpful, thank you and I hope you are well.
Dawn
very worrying if your Neurologist has never heard of Auras. Check their credentials.
Oh wow. When you noted on your most recent message it took you a while to get over the seizures, I thought you meant you were noticeably tired/bad weird moods/ so on. Status Epilepticus and hemorrhaging is something else entirely. Did they discuss the idea of a stroke or hemorrhagic activity causing the seizures? I mean, I don't know, that all is way out of my experience so maybe my previous message is no good. I would assume that what they mean by 'Multi Bilateral Basal Ganglia' is multiple bilateral lesions of the basal ganglia, which refers to some sort of scarring from an illness or disease ... but, it doesn't point to any particular cause of the lesion, that's just what they see.
Make sure you mention all that to your ENT (I'm referencing your most recent message in the other thread) since the ENT specialist seems to be more on the ball with this recent acute ear thing that could also be affecting your seizures. I would hope they'd be able to pull out what's probably related to *their specialty* and what's probably not. If it were me, I 'd ask them specifically about your concerns as written out here in your aura posts instead of worrying alone at home. I had to recently switch neurologists ... they don't normally deal with epilepsy (which I didn't know when I was referred there) and one of them especially made such strange comments I was extremely reticent to return ... but when i tried to get a new referral elsewhere, the medical office I'd been to referred me to the exact same practice ... This is to say, in my recent case, which has surface similarities if nothing else, I felt that interacting with an ENT first (who was aware I had been diagnosed through medical testing as having a seizure disorder) on a clearly agreed upon ETD, then proceeding once that was dealt with, preferable than seeing a neurologist who was NOT a specialist in anything related to my needs.
Hi, they couldnt find a cause for the seizures, but each time my bp was extremely high. I had a TIA back in 2013, but imaging has shown infarcts which i knew nothing about until last year. For a long time now i occasionally stop breathing when im asleep so maybe this lack of oxygen has caused the damage in my brain. Also something to do with basal ganglia has been stated on a discharge letter.
I did a sleep apnea test in september and the result was I dont have sleep apnea! But i still stop breathing at times tho!
From my first seizure in January 2021 to my 3rd seizure in April 2022, there was no medical testing carried out, they only went off ct scans to diagnose epilepsy. It was in September 2022 I questioned why there hadnt been an EEG carried out after the first seizure, and was told "it wasnt deemed necessary"!!. I had one done in July 2022 and it came back with a result of no abnormal electrical activity.
Sounds like we suffer with the same issues and its reassuring to know that someone knows what it all feels like, the weakness on one side, ENT issue, and seizures.
Also in january 2021, I was told by a doc in A&E that i would be referred to a First Seizure clinic. 11 months later i got that appointment after having a second seizure and brain bleed in march 2021. Receiving a diagnosis of epilepsy was a shock and also terrifying especially after seeing Status Epilepticus noted on my GP file, which to this day i have not been informed of.
I have a telephone appt on the 17th April with ENT for Tinnitus so will mention how the auras affect my right ear.
Also since last year, my hearing has gone really sensitive to noise, so am wondering do you have this too?
I want to say that bp goes up during seizure anyway but if you've been having vascular problems independent of the seizures, or were sick or had an infection in another way, or normally have elevated bp, that could add up to demonstrate more than just the average and mean more ... I don't know. Those would be things worth keeping an eye on I'd think. Are you diabetic by any chance?
I wanted to mention: when you say, 'just lately ive been having the strange feeling's i get before ive had seizures but it doesnt progress into one' -- that's the way mine often are. I've had them forever/since before I can remember. They were small enough to overlook and I didn't realize it wasn't normal. By the time I was old enough (teen) to realize it was maybe not normal, I got a scan, but never any EEGs. I had brain surgery as a child and just assumed they'd have told me if it was likely to have caused any lifelong issues. Maybe they told my parents and these conversations were never relayed? Who knows.
I took those results at face value until the episodes got worse, at which time they would "progress" -- just like you're expressing above -- into a different but related, more intense sensation. Fast forward a few more years, a new scan or two, the sleep study, two EEGs if I recall, and they saw activity on the second EEG. (I also was told no sleep apnea.) It's interesting to hear you express it as you did, and Michael_M comment, because I've said the same thing to doctors over the past few years and felt as if they were judging the statement with suspicion; like it wasn't accurate enough, maybe. I felt as if what Michael_M related was exactly what was going on, and I was concerned that they would keep getting worse -- that's why I bothered asking again after that first scan. I don't know if they will or not. Once I moved away from the neurology practice I visited as an adult I haven't been able to find anyone with direct current epilepsy experience.
About the sleep disturbances; I am not sure about this but there is a neurological form which might not be tested for under obstructive apnea tests called central sleep apnea. Maybe that's relevant? Again, I'm not sure they don't look for it during the same sleep studies but it's something to throw into the pot of possibility.
This is also something I'm working through. I recently was sent back to that neurology-but-not-epilepsy office I spoke of earlier and they told me to schedule a sleep study because they were sure from my self-report on "daytime sleepiness" I HAD to have sleep apnea. I told them that I'd had a study done by a highly regarded sleep disorder center. I gave them their information. I mentioned I had seizures at night, and a nurse had recently told me she thought I'd had a seizure during an outpatient procedure. The neuro said it wasn't her area ... so I didn't get anywhere right then with that, but, maybe *you're* having seizures at night and that's a possibility? Or TIA, even? Don't these attacks sometimes happen at night and people don't always realize? But then again, isn't Obstructive sleep apnea a risk factor for stroke? I'm not a doctor so clearly I'm just pondering out loud but apnea damage can mostly be reversed, can't it? With oxygen? And I also don't know but isn't it particular parts of the brain? So they (a general neurologist or sleep specialist) should be able to discern this for you? Again, just ideas.
I had made some statements about sinus infections and drainage at this last neurologist visit that were misinterpreted. (I mention this because you brought up sinus problems and ETD as well) -- that it was so bad sometimes my throat would fill with fluid, whether asleep or awake, and this would definitely sometimes cause choking. I said this to illustrate that there were other things going on but she wrote it down as "finds herself gasping awake." Point is, the ETD and/or infections that might result FROM that are maybe part of the picture. (ETD also causes extreme fatigue, which affects seizures .... -_-; )
So a lot of this is/can be related. With what you've said you can know that you've: (1) had TIA (2) have evidence of more from the infarct (3) have a ETD That's demonstrable stuff you can work with. A vascular neurologist is going to be able to tell you if your damage is likely from apnea or stroke, I should think?
>>>>
"with ENT for Tinnitus so will mention how the auras affect my right ear. Also since last year, my hearing has gone really sensitive to noise, so am wondering do you have this too? " <<
Yes, both. The disorientation you talked about before, yes, that too. The ringing in my ears since last winter has been crazy. Extra steroids, which I'd never taken before that I can recall, stopped the worst of it and I felt pretty "normal," it was amazing. In the time since, between that visit to a PA and the referred ENT visit upcoming (I had to push that back, not their fault), the variant fullness "feeling" and swelling sensations have returned, with visible facial swelling and congestion coming and going. I had a few small seizures recently but they'd been gone for quite some time. The ringing is off and on but not as bad as before. I am pretty sensitive to noise. But I think that's likely always been the case.
Have you always had the weakness or is that relatively new?
The weakness has been there since the first seizure. With regard to being diabetic, im still waiting for annual blood test results from july!, but i was told the year before that i was pre diabetic. Im also going to look into possible perimenopause, as its been suggested by family it could be this as my mum started menopause around my age. The joys of getting old!!!
I will look into everything you have suggested, you've been a great help, better than neuro thats for sure. Also need to contact epilepsy nurse about these auras but im worried about changing medication incase something happens when im at home alone.
Diabetes or prediabetes, hormone changes, yes yes yes, all those things could be at the root or contributing. I really hope you can pin down the cause of the ischemic attacks and that will lead to more therapies and normalcy. It sounds like you've got some good support even if the neurologist might not have had the right specialty. Hopefully that will change as more test results come in.
I hope so. Today is a bit of an "off day" but only because ive been out and about. Will see what epilepsy nurse says when i can finally get hold of her. From what she said before, the neurologist ive seen isnt specialised in epilepsy. The only decent support i have at the moment is my CBT therapist.
neurology doctor never heard of auras?
No, i thought it strange too
hi
bit strange , an epilepsy specialist not knowing what an Aura is!
anyway,,
I get something similar ,
I've suffered with migraines for many years, and they always seem to start with a visual aura, around my peripheral vison , this fades and i get a bad headache.
my epilepsy started about 2years ago,
I had a massive fit in my sleep, and was taken to Aand E,
( I blame that on a faulty heater in my shed ,,giving me CO poisoning)
but apparently not,
so ive been told I have temporal lobe epilepsy,
and was initially prescribed Keppra,
like most people
the side effects were worse than the epilepsy,
im now on Briviact,
the one thing you mentioned , which rang a bell for me ,was
you get very tired,
im the same , about 2 or 3 hours after my morning tablet,, feel like falling asleep,
no matter how much sleep ive had earlier,
and sometimes i drop off ,and wake up immediately, without any memory of who or where i am!
its happened about 7 or 8 times since ive been on the medication,
im now beginning to think its a side effect of the tablets , and not epilepsy at all
maybe thats just wishful thinking.
take care ,
hope things get better for.
Some Things that have have helped my son have less seizures. 
Grandmal epilepsy 
Driving Licence 
Using a wheelchair for epilepsy. 
