SIMPLE PARTIAL SEIZURES- CLUSTERS and AURAS

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EML

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Hi all
Since diagnosis of Focal Epilepsy 2 weeks ago, have continued with my obsessive reading and as I read more I recognise myself more but also few things coming into query To recap on newbie post - have probably been having them for around 4 years I know (got CT scan around 4 years ago related to the 'weird' episodes I went to GP for) but only kept any notes for the last 2 years suggesting that before this it wasn't an issue

My SPS symptoms do seem mainly temporal lobe related- deja vu, rising feeling with nausea and accompanying anxiety and generally feeling off colour after. Some metallic taste at times. Have read that TLE later in life can be related to brain abnormality and damage to/from hippocampus but to get MRI and EEG in any case so will need to park that thought for now . A few queries for those who get them however , if I may?

CLUSTERS
I read that SPS are the type less likely to present in clusters but mines ONLY present in clusters. I have read that clusters in a day can be counted as one seizure episode and know its apparently the initial seizure that causes the brain excitability that sparks clusters. However, my diary records have highlighted that there have been around up to 5 x day. for max of 3 days. Then they don't come back for 5 or 6 months hence the query on need for any medication. In a cruel twist of fate post diagnosis I have been having them all day today- 4 so far. All the same type and duration. It has however been 6 months since my last ones. I have mentioned clusters to Neuro and not sure if he picking this up from me as consecutive days , or in fact clusters across the day. He didn't seem to mention it as a problem either way.
They are just horrid but am not keen on meds at this time until post MRI and EEG. Just wondering if anyone has similar SPS experiences

Is a gap this long usual?

AURAS or SPS?
I know SPS are auras for those with CPS or generalised seizures but can you get Auras with SPS or is anything weird just part of the seizure itself. Yesterday morning I woke up in the morning and had what I can only describe as 'chattering' in my brain. I don't physically hear anyone speaking but its like a phrase is being repeated in the background. I did wonder yesterday if I was going to have a day of SPS but didn't - but have today. I get this in between SPS and often right before the deja vu and intense nausea/occasional hot flush but not sure if this is actually part of the seizure (in which case I am having more SPS within the cluster than I think though it would be a stand alone thing) or if it's actually an aura to SPS. So today was clearing out the kitchen, the chattering started and then bang - usual SPS symptoms

However, few times today have felt strange but almost as if I have managed to 'stop' it rising into the usual seizure. Again, is this seizure or an aura or what?

Sorry for the questions. I have read lots and recognised myself in lots of the SPS symptoms for some time but the other strange stuff is referred to less, hence keen for the anecdotal stuff and peer experiences

Thanks a lot x
 
Hi EML,

You don't need to apologize for asking questions at all. There are certain days of the month when I will have clusters of
absence and aura seizures and a lot of that has to do with hormones changing each month. I get a nervous feeling in my stomach
and see colors flashing back and forth in my eyes. This is what my neuro. told me to do back in the 1970's and you should give it
a try. The moment you feel an aura seizure start tighten up all the muscles in you body and make your hands into tight fists if you do
it quick enough it will stop the seizure. I know it sounds crazy but it has worked a lot for me.

How's the weather in your area today this could be another reason why you are having seizures. If there's a low pressure
in the weather that in turn effects the hormones and can trigger seizures even if the low pressure in a couple of days away.

Sometimes I get the feeling I don't know where I'm at I will be sitting in my living room and everything looks strange to me
and sometimes it looks like it's far away from me. This is still all part of a aura seziure.

You should look into getting a spect and pet scan done and as I mentioned before see an Epileptologist. They really know
how to handle epilepsy and find out what's triggering seizures along with finding the best med. I wish you the best of luck
and May God Bless You!

Sue
 
Hello. I've had SPs since childhood, and began having CPs a little over 20 years ago. I can always feel an SP come on. It usually begins as an odd feeling that starts at the back of my head, & spreads towards the front/top. Those usually last less than 5 minutes.
My CPs, though, are very troublesome. Unless someone else witnesses them or I do something to myself/my surroundings, I don't even know when one occurs.
I track all of my seizures--date, time, length, and what type. I also write down anything that I did to myself or the things around me. In my case, despite keeping a log since 2012, I haven't noticed my seizures following any pattern. I've actually had some instances when seizures have occurred 3 hours after I took a dose of medicine!
 
Apparently,I just had a CP recently. Everyone else--my younger son & husband--were asleep upstairs. I only realized that I must have had one when I noticed a hole in the hallway wall. It was behind the garage door near the doorstop spring. The seizure probably occurred after I had prepared for my morning prayers, causing me to fall & hit my elbow into the wall. I also felt soreness in my elbow, and it was bleeding.
 
I have auras before simple partial seizures too. They are simple partial seizures in of themselves too, but I call them auras because of their typical placement, symptoms, and what comes after them.
 
I used to have the feeling of de javu and the auras, these went on for years and Doctors ignored them. I then had a big seizure which was originally thought to be a stroke. Then downgraded to a TUI and then after lots of tests an EEG confirmed epilepsy. I've been on Epilim for 2 years and largely seizure free, but my concentration is rubbish now.
 
AEDs really mess with your short-term memory. We often joke that Topamax is "Dopamax" due to all the problems it causes. I just weaned off of 400mg/day of Topamax & onto 200mg/day of Xcopri. I also take 500mg/day of Zonisamide.
I was still averaging 1-3 complex partials/month despite taking Topamax & Zonisamide, so my neurologist wanted to try this new AED. So far, I've been okay except for a couple complex partials that I had in the early stages of dropping Topamax. Now, I wonder how long this will last. Every time I have switched and/or added an AED, my seizures will pause for a while--6 to 8 months, maybe a bit longer--but then it's as if my brain becomes "immune" to that medication and the seizures start up again.
 
I feel lucky as my epilepsy apart from 2 big seizures has been mild. I do worry about moaning about my meds though, as my wife says it'll create problems as you wean off one and go onto another with no gayranteed it won't be worse. I was originally on Topimarite and I lost weight and felt stoned!!
 
Hi, I have mostly focal aware seizures and about 10 years ago they started happening in alarming clusters. This is before they were officially diagnosed and were untreated.

They started in my teens and were misdiagnosed as migraine but I only had one or so a month so I went for around 40 years like that. I kept them secret. When these huge clusters started happening 10 years ago it would wipe me out for days and started messing with my memory pretty bad. I had clusters of up to 53 in a couple of days and the clusters were usually 4-6 weeks apart.

Because I didn't have health insurance I did the best I could without medical care for about 6 years, and then finally got to a doctor that believed me that they might not just be panic attacks or migraines. He got me to a neurologist that quickly diagnosed me with focal aware mesial temporal lobe epilepsy even though my MRI and EEGs were negative. The meds helped though, stopping about 75% of them. That was almost 5 years ago and I'm on my 9th AED so far and am still intractable.

I did do a week long inpatient EMU stay last year and there was nothing for 6 days so they said I had PNES. On the last 7th night and last 7 hours I had a cluster of 14 seizures on EEG. Finally some validation after so many years! They were mostly left onset but a few were bilateral. We're now doing a pre-surgical evaluation because they want them to completely stop because some of mine cause what's called ictal bradycardia which can be dangerous.

So as to clusters, well sure that happens. I know a number of people that have them. On meds mine went from like to 40 seizures to less than 10 per cluster. They are serious seizures though even though they don't look like much to others.

The word "aura" causes confusion. A lot of people that have tonic clonic's call focal aware's auras, but I'm sure you've read they are seizures unto themselves. I used to be defensive when people would call them "just auras" or "mild seizures" but now I don't care because I'm secure knowing what they are. I also developed some focal impaired awareness seizures and had one TC so I understand why people would be confused. I also have what I call daily auras of multiple deja vu, ears ringing and visual auras and so on, but the doctors don't seem interested in them because they didn't show up on EEG in the EMU. Go figure.

As to being obsessed by them and doing tons of research, I think that's just part of the disorder for me. My brain is trying to fix itself and it's hard to let that go. I just want them gone, out of my life, and I want that to happen without drugs that are intolerable. I'm 68 now, but I'm also ready to accept that they may just be here for good. Even if they are I think it's possible to somehow make peace with them and quit fighting all the time. I hope you get yours under control and come to peace with them as well. Sending good seizure free energy your way.
 
Since I titrated fully onto 200MG/day of the Xcopri & dropped Topiramate, I've only had 2 or 3 complex partials, & 1 simple partial. That's an average of less than 1/month.
I was averaging 1-3 complex partials per month--sometimes 2+ in a day before I began Xcopri. Now, to see exactly how long this effect lasts before the seizures decide to return to their normal amount.
 
Sabbo said:
Since I titrated fully onto 200MG/day of the Xcopri & dropped Topiramate, I've only had 2 or 3 complex partials, & 1 simple partial. That's an average of less than 1/month.
I was averaging 1-3 complex partials per month--sometimes 2+ in a day before I began Xcopri. Now, to see exactly how long this effect lasts before the seizures decide to return to their normal amount.
Click to expand...
Sabbo, I read your previous post on this thread and we have a lot in common. I also have kept a meticulous seizure log since 2012 and have it entered into Excel so I can chart it and such looking for trends. Xcopri is one of the few AEDs left to try and My epileptologist also suggested Epidiolex which I'm interested in. Like you all meds eventually lose efficacy and/or become intolerable. My all time seizure average is 1 seizure per day unmedicated, and 1 per every 5 days while on AEDs. I'm on Lamictal now and after about 7 months it's just stopped working so well. Last weekend I had the largest cluster I've had in over 4.5 years and before I was medicated. Also, my emergency med clonazapam is becoming less effective shutting down seizures so we've upped that pretty much to the max. Sorry for the sob story but I was excited finding someone with such similar problems.
 
Although I've been doing what I'd consider to be much better addition of Xcopri, I may have just my neurologist take me off of it. The monthly copay may be too high. Our insurance has been a pain recently. They said something relating to me has run out, so I'd have to pay $600 for a month's supply for December. We asked the pharmacy to give me just a week's supply--7 pills--and it cost $160! When I went to get more, they only gave me 7 more pills, & charged me another $55. I've talked to the manufacturer and filled out their assistance forms--they said my cost should be $55 for a month's supply--not 7 days. Last night, my husband was on a rant about things, including my meds cost. I decided right then & there that I won't call for or pick up the next 1-week supply. I couldn't care less any more what happens as far the seizures are concerned.
 
I've had crazy things happen despite not missing any doses of my AEDs. One day, a few before Christmas, I had 3 complex partials within a few hours! My mom was there for all of them. During one, I was one the sofa drinking tea (which I spilled all over myself--didn't get burned).
We had to drive to Atlanta for a wedding--left 12/29, came back New Year's Day. I had a major complex partial on 1/1/23 while at the groom's parent's house for brunch. I was seated, talking to a friend when it occurred. I fell HARD onto their concrete tiled floor--my back's STILL sore!!
 
Is there any end to these epilepsy experiences. One thing about epilepsy as a disorder is the scope of things that can happen, it's endless, and we somehow all make it through. Sorry about your hard fall, did you survive OK. Hoping you can continue trialing XCopri, maybe it's the one, I've said that many times before. I currently going through a seizure cluster. Mr doc uopped my emergency med to maximum ans they still aren't stopping. Had one a couple of hours ago and remembered to use my pulse/oximeter and it showed my heart rate went down to 28 beats per minute which is not unusual for me. Thanks for letting me vent, I hopw you're having a better day.
 
We did finally get the cost issues resolved late last year--for a few months, my copay will be around $30. In February I have to fill out a form on the manufacturer's website and send them a list of our annual NET income and our regular monthly costs--mortgage, gas, water, electricity, groceries, etc. THEN they'll see if I'm eligible for financial aid. My husband spoke to a representative from the manufacturer's customer service department.
 
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