Strange episodes/auras

[Dawn43]

Ive been having these a lot just lately, like 3 or 4 some days, none on other days. GP has said they are known as a Focal Seizure. It starts with a warm feeling on the right side of my face and head, then a sick feeling and a pulsating in my right ear. Also BP seems to increase, my highest reading was 162/112, pulse 107. Have recently been told by ENT that i have Eustachian Tube Dysfunction, which after having a cold in August 2022, i had fluid in the tube which only cleared last month. After a recent cold, my right Eustachian tube is once again playing up.

Ive recently weaned back down to 500mg twice a day keppra, from 750mg twice a day as it will be a year on the 24th April since i last had a seizure, and felt the increase of keppra was causing me to have angry outbursts.

As it had been 1 year previous to this last seizure when i had my second seizure, (march 2021), (had 3 in 2 years), i didnt see the point in increasing it due to the seizures not being frequent. So have gone back down to 500mg.

These strange feelings im having have been happening since late last year and am wondering whether it has anything to do with ear problem, as with each seizure the auras have been the same feelings im having lately, but havent escalated into a full blown seizure. This is frightening me so much now that im terrified something bad is going to happen to me as it takes me a while to come out of a seizure.

[paddie2]

Hi Dawn ..not a great fan of Keppra so pleased that you have weaned yourself to a lower dose ..just need to get the balance . My daughter was given Keppra but it just knocked her sideways for days ..wasnt able to cope with daily life , just wanted to sit ..so shes been told to come off it and now she has Clobisan to be a sort of rescue .so when she feels unsteady which is different from her grand mal .(these ones cause her to pick at her jumper, shuffle on her chair she kinda looks agitated but still 50% with it . . Anyway she just has a 1/4 of the one tablet shes supposed to have and it helps ..unfortunately its another tablet that keeps you drowsy for the day ..i dread to think the effect one whole tablet would have ,far too strong .Anyway about your ear problem, there is so much hayfever this time of year could this possibly be a reason you might have been effected lately blocked ears, sinus issues and balance .

[Dawn43 in reply to paddie2]

Hi thanks for replying. It seems every time i have a cold, this happens to my eustachian tube and according to the ent doctor, its something i was born with, a dysfunctional tube. It is annoying though, especially after it clearing recently and now its playing up again. I think it'll be a case of having a grommet inserted.Doc did say i would feel worse before i feel better with my medication. Also had to increase amlodipine and paroxetine due to bp and anxiety.

Hope your daughter is ok.

[9thwave]

Hi , sorry to hear of your distress around the sensations you’re experiencing.

I can’t comment on focal seizures if that’s what they are as I haven’t experienced them .. my experience is of Tonic clonic seizures at roughly the same rate you experience and I also take Keppra - fluctuating between 500 & 750 mg - I increased to 750 again after having a seizure last October on 500 mg . I too experience some anger issues though constrained to myself or at myself & also wonder whether it’s causing sleep issues. For this reason , in discussion with my consultant I requested trying a change of drug to Sodium Valporate. The first day I took it I had a seizure! Maybe it was Co incidence? Anyhow I stopped and returned to Keppra 750 mg for now . Maybe I need to persist?!

Acknowledging your other medical problems I wonder whether it would be worth trying an increase of the Keppra again for a trial to see if it stops you experiencing the sensations you describe ? If your symptoms continue then maybe more reason to believe the cause is from another source or if they stop then it could be that they are focal seizures.

If they do prove to be focal seizures then maybe , as your experience of the side effects of Keppra is something you find difficult- you could look into the possibility of a different anti epileptic drug ?

I must conclude by saying I’m no doctor so my suggestion is only from a practical perspective and any increase or change of medication would of course need to be informed by your consultant.

Wishing you the best .

[Dawn43 in reply to 9thwave]

Hi thanks for replying. Its my own fault for the seizure last april as i had missed a few tablets in the week prior to seizure. Since starting on keppra 500mg in march 2021, i was ok on it. Until last year!

On an mri scan, it showed mesial temporal sclerosis and right hippocampus is smaller than the left. In the 2 years since my first seizure jan 2021, this is all i have been told.

I havent had any of these strange feelings today, but will see how it goes before discussing with epilepsy nurse as to increasing back to 750mg.

Im currently on a 12 week CBT course, which i have noticed a change in myself for the better, but at times I still get agitated and feel a lot of pressure in my head as tho im going to explode with rage, but I can keep it under control, even tho it is hard to.

[9thwave in reply to Dawn43]

The rage as you describe sounds worse than I experience and of course is a known side effect of Keppra so perhaps my suggestion to increase even as a trial isn’t the best idea ?

Perhaps a discussion around a change of drug - as the other person that responded suggested to maybe Lamotrogine . It’s another my consultant suggested for me as an alternative.

Sorry , more drug talk I know ! Just so hard to get clear answers from doctors though the research around epilepsy and all it’s complexities has also yet to come up with clear conclusions it seems.

The CBT sounds like a positive step, one I mean to pursue!

Really do wish you well & hope you find solutions

[Dawn43 in reply to 9thwave]

Hi, the rage is bad, but also i have had a lot to deal with over the last 2 years such as my own health and losing my dad to a brain tumour, everything including personal life has got on top of me to the point id had enough and spoke my mind instead of keeping quiet. Now instead of putting everyone else first, ive decided to put me first for a change, which CBT is helping with. Look into CBT. A neighbour where i live also has had it and told me that afterwards I'll be a totally different person which i am noticing already.

Wishing you well too and all the best.

[StevieTea]

I’m sorry to hear you are going through this and hope that it’s not too distressing.

From what you have described, it’s something I’ve never thought about or linked. I’ve had two focal onset seizures, 7 years apart. For as long as I can remember, I’ve always had an issue with my Eustachian tubes feeling full of fluid, thinking that was associated with my mild deafness. I now am curious to see if there is any association with Eustachian tube dysfunction and focal onset seizures.

With the aura before a seizure, it’s like the world goes grey, feeling a bit faint but then wears off before the seizure. I can’t remember if hearing dropped off during the seizure though

I was also on Keppra after the first seizure, really didn’t get on with it so titrated down and replaced with Lamotrigine.

[Dawn43 in reply to StevieTea]

Hi thanks for replying. I was referred to ENT last june by neuro but when my tube became dysfunctional, i had a hearing test and it showed i had 40% hearing loss in my right ear. Then I had a camera up my nose which showed the tube was narrower than it should be. Its strange how the auras seem to affect my right ear by there being a thumping in it, these last a minute or 2, but the sick feeling is horrible. Occasionally I'll end up with a headache. I always feel really tired afterwards and my right leg, which suffers from a slight weakness, the weakness tends to get worse.

Not knowing what is actually going on is frustrating, it seems all the docs want to do is prescribe pills.

[TMeeps02]

Hi Dawn, I have both seizures and ETD, too. I would at first think the sensations you describe [seem] linked to the ear. I have problems almost every year from Sep to Feb. Because I experience sinus problems chronically, every year, any amorphous, body-achey "sick" perceptions I get are always suspect and, as a result, I generally let head etc. colds get too bad before noticing, thinking, "It's just me, I'll have hot tea and everything will be fine." I'm pretty sure I mistakenly and needlessly ride-out sinus infections pretty often.

I can say that when sinus problems get bad, sleep gets bad. You get stuff dripping down your nose/throat and internal pressure in the head and neck when you lie down, whether you realize it or not. And whether I notice sleep disturbances or not, the disturbed sleep results in an increase of seizures.

My seizures don't begin like you've described but I do get a few a day sometimes, none for months other times. I get similar sensations to what you've described when I have a "full" E/N/T. Not saying they are the same thing in this case, because at the bottom you say yours have been aura in the past, but I would personally relate sensations like that in myself to the ENT problems if not a mix because of my own structure/neurology -- there's always that.

Interestingly, I have a weak side of my body, too, same side as the ETD. When I'm going through an increase in seizure activity I also seem to notice that side feels off -- cottony, weaker. I think it's all related but I don't have anyone looking into it so that's just my theory. I couldn't help noticing we're around the same age and if I'm not mistaken that's before they began labeling "minor" cerebral palsy. Maybe the answer is in there somewhere. I don't know. Regardless, I think the next best thing, although this is just from my experience, would be not to worry, have the ENT put you on a regimen for your sinus and ears, and make sleep a top priority.

[Pembrokeshirelass in reply to TMeeps02]

Hi TMeeps02 I'm new here 👋, so I've just been reading some posts, and I noticed your mention of "....before they began labelling "minor" cerebral palsy." I have a couple of types of epilepsy, but I also have a weakness in both of my legs, for which no cause has been found as yet. Several years ago, a doctor said that it could be minor cerebral palsy - at the time I didn't pursue it, but now, I would really like to find out what's causing it, and if anything can be done to help, but whenever I mention it to other GP's, they look at me as if I'm a bit odd 🥴 (even the GP who originally said it to me!!). So your comment got me wondering what you were referring to ? Any light that can be shed on this subject would be really appreciated - thank you 😊