Temporal Lobe Epilepsy & Sudden Noise??

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Elaine H

New
Messages
498
Reaction score
0
Points
0
Hi Guys

Long time no hear huh?

Hope you are all well, lots of new names on here I see which is great, so let's hope some of you have some input for me here, I may even be able to add it to the book if it will help other people with epilepsy.

I was recently subjected to some really terrifying loud noises, namely exploding balloons, may not sound like much, but when you are sat with your partner, enjoying a quiet drink and a chat, and these things are exploding intermittently, it reduced me too tears, I also cannot stand alarms of any kind, smoke alarms, alarm clocks, car alarms, sudden bells ringing, I also don't like to be made to suddenly jump or to be scared. I just wondered if anyone else with TLE was the same? I know I was told to expect to be very emotional following my second brain surgery, (Right Temporal Resection) and I can burst into tears as soon as wink, I can also have bursts of hysterical laughter lasting for ages, so extremes of emotion are common, but I was absolutely terrified with the balloons bursting. November 5th should be fun huh?

I hope everyone is happy and healthy, I'm ok, just been a pretty bad few months, but determined to complete my book, and keep smiling, done a lot of radio and articles recently, plus a film shown recently in The House of Lords, and I'm up at the HQ of Epilepsy Action next week so that'll be cool. Keep talking to everyone ok, and keep your heads up all of you!! Love Ya!!

Lotsalove to you all

Lainey xxxxxxxxxx
 
Last edited:
Hi, Lainey! Long time no see. I'm so happy to hear from you!

It sounds like things have been really tough lately. I'm so sorry. I wish I could give you a big hug. Here's an electronic one instead. <<<<<hug>>>>>

Are you still on Keppra? When I was on Keppra I had such extreme mood swings. One minute I'd be incredibly angry, the next horribly depressed and crying. Stumbling in the kitchen could set me off, so I imagine being startled by a balloon would have set me off, too.

Uncontrollable laughing and crying is also a type of seizure - Gelastic Seizures.
http://en.wikipedia.org/wiki/Gelastic_seizure
Does that sound like what is happening to you?

I'm trying to figure out how balloons popping could be a trigger - maybe being startled is a seizure trigger for you?

I have problems with sound, but it's a different kind of problem. In a place that's loud and noisy and there are a lot of competing sounds, it can be a seizure trigger for me. I have no idea why. Same with tons of patterns and colors around me. Really, anything that is visually confusing to me. I have a tough time with that, too.

Have you told your doctor about the laughing and crying?

Hang in there.
 
Welcome back, Elaine,

I'm glad you're getting on with your life, in spite of all the difficulties after brain surgery. I, too, am very jumpy and easily disturbed by those sudden noises. Like one time, I was waiting in line at the airport and a lady came up behind me, set her bag down and I about jumped out of my skin. Same type of things have happened at the supermarket. Another time a neighbor had to call the fire department because their BBQ was on fire, and just the sound of the sirens made me crazy. It's the sudden noise, so abrupt, that is so disrupting and disturbing. Feels like an attack on my space. My family now knows NOT to suddenly come up behind me. It could scare the crap out of me and set me up for a seizure. All this started for me after my left temporal lobectomy, as did the deep depression, mood swings.

As Endless said, have you mentioned all of laughing/crying to your doctor?
 
Last edited:
Hi Elaine, hope things are steadying for you now, and that you are feeling better.

Reflex epilepsies can be caused by sharp sounds and quick movements, in addition to more common things like bright or flashing lights. Even without the noises leading to actual seizures, it makes sense that you might have a quicker "startle reflex". Increased sensitivity of all kinds (sensory and emotional) is related to TLE or lesions near the temporal lobe.
 
Hi Lainey,

So glad to see you. I've been away for some time too and WOW this is the first post I read. I think of you often.

So sad to hear you're having a rough go. I'm starting to except that things may always be rough for us.

As for noises. My hearing has been very sensitive since surgery also as is my sense of smell. My theory is that our senses are heightened to make up for the loss of the hippocampus. Maybe we need more input from the outside world to create memories, or maybe its the whole everything seems so much brighter after you've looked death in the face and beat it. I mean lets face it brain surgery is pretty scary no matter how prepared we were for it. The first time I really noticed it was a few days after surgery I was walking down my driveway and could smell flowers from way down the road and I had a notoriously bad sense of smell from allergies.

Emotions well I'm a bit of a train wreck too. I guess its ok to cry over the really big things but how can we avoid letting the little ones get to us so bad.

Must go now. I'll try to write again later.

Love ya

Paula
 
Flinnigan,

Good to hear from you, too. I didn't realize you were a train wreck also. :sad:

Having our hippocampus' tampered with is something no one can relate to but those of us who've been through it, not even the surgeons. They can all come up with theories, but that is all they are. Those of us who have been through the surgery all have our own stories, so depending on where in the brain the surgery was performed will determine how we live, behave, hear, see, smell, speak, remember, etc.
And if the surgery was successful or not, is a big factor, also.
 
Hi Guys
Thanks for your replies about enhanced senses and emotions, I was aware that I would have heightened emotions and senses after the surgery as the Hippocampus was in the Limbic System, and of course responsible for all emotions, I just could not believe how terrified I was that night in the pub, I also find that I keep getting the letters of words the wrong way round, which is really annoying. I burst into tears at the drop of a hat, and have spent today alone for the first time in a long while, Mark has been off work for a while and went back today, so the brain went into overdrive, between us we've been to four funerals in a month and it's been a horrible time, I've just been thinking about death a lot, I guess that a lot of people do, but I've always had a pretty weird fascination for it, anyone else out there the same??
Hey, gotta tell ya, I had a great wobbler yesterday, I was putting my makeup on, and suddenly realised that I had lost the brush end of the mascarra,I looked everywhere for it, behind the chair, under the chair, in my bag, could not see it anywhere, gave up, went upstairs to get changed, and found it down the front of my bra!!??!!! I had mascarra all over my right boob!!! I laughed so much!
My Dad is up next week to help me set up a website about my epilepsy and experiences, so I'll let you know how it goes, I'm a bit of a technophobe so I'm glad he knows what he's doing.
I'm stilll job hunting, there is absolutely nothing going on in the UK at the moment, and the recession seems to tighten it's grip daily, things have to get better soon, we have looked at moving but it seems to be the same everywhere. We're keeping busy by decorating at the moment, that is keeping me challenged and focussed which is great!
Please keep in touch guys, I look on here a few times a week, lots of new folk eh? I hope everyone is ok, and like me, still sticking two fingers up to Epilepsy and all the problems that sometimes that come with it?!

Lots and lotsalove
LAINEY
XXXX
 
Hi There Endless
Good to hear from you, sorry for the delay in replying, things are pretty manic here with decorating the living room, the computer has been under dust sheets for a week, I know it is going to look lovely when we are finished, but I guess we all have to go through the messy bit first don't we?

I hope you are doing ok, you asked me about Keppra? I still take 200mg am, but I decided to stop the 200mg pm last week, purely because I was asleep every night by about 8pm, and that's not fair on my partner, I was a real bag of laughs!! Since I stopped taking it, I haven't been falling asleep and just feel so much better, I had a couple of small wobblers yesterday, but that's how it is at the moment, I go four or five weeks completely seizure free, then I'll have a few small ones, then seizure free again, then a few small ones, and that's how it goes now.

Thanks for your suggestions on sounds and things, I would guess from what you say that you are photosensitive? The shapes and geometric patterns are a common trigger of photosensitive epilepsy, I'm ok in that sense, as I'm not P.S it was good to hear from a couple of you that it's happened to you too though, and that I'm not a loony!!!

I know people say, "Blimey, brain surgery eh? that must have kneckered your head up eh?" but I never think of it until I talk to you guys, and like Flinnigan and Cint said on here, they are real "train wrecks" I guess if someone sat and analysed me they would have a real "field day" Like I would love to know where my sex drive drove off to since brain surgery and the menopause knackered up my body!!! But that's another thread on here, I would so love to talk to others though, but like me, not everyone is open and happy to talk openly about stuff like that are they? I need a shrink??!!
Anyway, please please keep in touch, it is totally awesome to hear from you, and I so appreciate your friendship on here I really mean that, it's things like this that make us all realise the complexities of epilepsy isn't it? I'm hoping to set up my own website very soon on my experiences with epilepsy, so I will let you know. Hope to talk again soon.

Lotsalove

Lainey
xxxx
 
Lainey:
I do not have the temporal lobe epilepsy. I have the big seizures only when I sleep. After 30 plus years of this fun, I also grind my teeth at night. I now have a pounding drum in my right ear, and every little or big noise adds to the drum! I am jumpy also, very sensitive to noises. My Father was the same, but he did not have epilepsy. Not sure what came first, the side effects of seizures and meds, or genetically predisposed to having a heightened sense of awareness. My flight or fight response is right below the surface. My husband knows now not to "surprise me", because a right hook could ensue!:bigsmile:
 
Hi Elaine,

I have Temporal Lobe epilepsy, but have never had surgery. I am highly sensitive to things, especially those that scare or startle me, and it always ends in tears. I had never related it to a type of epilepsy, but just medication...as I was never sensitive to these things before-so that's a thinker!

Best Wishes
 
Sorry to hear you've had a rough few months but glad you are back on and determined to get on with what you were doing prior to your surgery. I have not had any kind of brain surgery, but will say that tampering with the hippocampus can make someone more sensitive to environmental stimuli since it is connected with the limibic system, or at least that makes sense to me...I am studying nursing.

There's still a lot that isn't fully known about how exactly the brain works; just a few years ago, most experts in the field of neurology thought it was impossible for adults to grow new neurons---this theory has since been proven false.

The laughing and crying jags could be a result of the surgery, meds, or menopause. My sister-in-law had quite a time with menopause and crying jags, so I guess it's not imposible. The Keppra makes me a bit more prone towards tears around that time of month...still, as some of the others have said, you might want to bring it up to your doctor.

I never did like loud noises, way before I ever developed seizures (just developed them this June). I don't have temporal lobe epilepsy--I have simple partials that generalize into tonic clonic seizures. I have noticed that loud noises do bother me MUCH more now, though I am not sure if that is a side effect of the epilepsy or some of the meds (Topomax/Lamictal XR/Keppra) that I am taking. I didn't really notice how much noise bothered me until my husband pointed it out when I was on the phone with my mom and dad and my daughter had her computer game music turned up too loud (so I thought) and my husband had the TV turned up too loud (in my opinion). Turned out it was no louder than normal...he mentioned that he's noticed I am more sensitive to noise and light than I used to be.

I would love to see you do a site on epilepsy; there is too little information on it. More information from people who actually have it would be helpful and might help dispel some of the widespread ignorance about it.

Hope you are feeling better soon!
 
I am new to this. Even though I have been suffering from problems for a while now. My issue is something that happened to me last night (10/15/16) and last Tuesday Night before that. I have been experimenting with music to help me control seizures. I went almost 4 days seizure free. Tuesday night a young spoiled self centered 13 year old was wearing ear buds but humming to the music very loudly. I was able to get this stopped then the child came back into the living room and started loud mindless gibberish with her father I left the room but less then 30 minutes later I was in the bedroom and had an absence seizure followed with several minutes of uncontrolled shaking of my right hand. Last night this same child screamed out very loudly in such a way I was startled. Withing seconds I was on my knees I lost all use of my muscles and was on the floor. After about 5 minutes I was able to get in bed where I stayed most of the rest of the night. This is very disconcerting to me. I can't believe that loud sudden noise could do this until the last few days.
 
Last edited:
Hi Mike,

Welcome to CWE! I may be wrong but it sounds like you may be having audio seizures which means certain sounds can trigger seizures for you. I have a similar problem but
it's cell phones that trigger seizures for me. If I'm in a store or any place where a lot of
cell phones are being used at the same time it causes me to go into a seizure. My neuro
did a e.e.g. on me and they purposely turned on a few cell phones at the same time but I didn't know about it and each time the cell phones came on there was a spike in the e.e.g.
You may want to let your neuro know about this and they can do a e.e.g. like I had only with sounds to see if that's what is triggering the seizures. I wish you the best of luck and May God Bless You!

Sue
 
Thank you for the reply. I am new here and have not fully filled out my profile. I have PTE and for some reason I am having 3 different kinds of seizures. I'm coping with this, but it is not easy.
 
I know this sounds really odd but the low frequency sound elephants and whales make make me shudder feel sick my brain feels like exploding thank the freaking god I don't see to many in my town.
6months ago a pod of whales and sub pods swimming not far from house about 60 in all making whooping ,I thought going to die the pain in my head my ears felt like exploding.
Balloons they just make me jump
 
HI Mike,
Just like you I have different types of seizures. I started out with absence seizures then about 2 yrs. later I also started having complex partial seizures along with simple partial seizures also called aura seizures. It was like that for many yrs. then I got absence status seizures and I found out it was from the Neurontin I was taking so I went off of that and those seizures ended later on I started having myoclonic seizures the type a person has when the first wake up or when they go to bed at night but vimpat stopped those thank goodness.
According to my Epilelptologist the reason why I have had so many types of seizures is because damage spread on my brain over the yrs. from so many seizures. When I was a kid they found scar tissue on the right temporal lobe but as time went by and I had more seizures brain damage spread to the frontal lobe and over to the left temporal lobe. I finally had surgery done to help reduce my seizures and I started using cbd oil (medical marijuana) and that has helped reduce my seizures a lot. If you haven't started keeping track of your seizures get a calendar and write down what time of day/night you have a seizure along with the type of seizure, by doing this your neuro or Epileptologist may see a pattern in your seizures as to what time of day/night the seizures happen or what days of the month. I have one week each month where I have 2-3 days of seizures no matter what. Wishing you well and May God Bless You!

Sue
 
I took a few minutes to fill out my profile. I'm not going to retype it here. Thanks for the replies.
 
Back
Top Bottom