Strange sensations

[Goldenagerockchick]

Hi this is my first time posting (I think). Does anyone else get what I can only describe as butterflies in your stomach often accompanied by an overwhelming feeling of wanting to cry? I believe this is actually a seizure? It passes in less than a minute & can occur several times a morning. Seizures have always been a morning thing for me.

I have had Epilepsy since childhood & been fortunate enough for it to be well controlled. At least that's what I always assumed along with the assumption that it was only mild. Now at the grand old age of 55 things have changed somewhat. In childhood & adolescence I had grand mal seizures with the worst one rendering me unconcious for about an hour. A family trauma a few years ago sparked off a marked change in my seizures.

Thank you x

 

[Zolt]

Welcome to CWE,

What type of medication are you on? I had the same type of feeling " overwhelming feeling of wanting to cry " after i had my brain tumor removed, when i was on Steroids and Keppra. I think it was the Keppra that gave me the feeling to want to cry and at times give me a feeling of rage. If someone mentioned any deceased person, especially the closer they where to my family, i would straight up cry. Not sure when that stopped, but sure glad it did. That was a long time ago, so i can't recall if i had any butterflies in my stomach.

Have you seen a doctor about this? My seizures were brought on by a huge baseball size tumor on my left Parietal and Frontal lobe area. Luckily the doctor said that if you were going to have such a big tumor that is the best place to have it, ie most accommodating place.



Hope you find answers to your questions.

iano: op:

 

[Goldenagerockchick]

Thank you Zolt. I am on Phenobarbitone & have been for nearly 50 years with only the dosage varying. It has suited me well over the years but am currently in a catch 22 situation of sticking with better the devil I know & just upping the meds or trying something new & risking jumping out of the frying pan into the fire.

Are you sitting comfortably?!:

I have always had these sensations but just assumed they were normal it's only very recently I realised they very probably aren't the sort of butterflies that other people without Epilepsy get. It occurs for no apparent reason & passes so quickly too, I can be making a cup of tea for instance & it'll happen but always always in the morning.

My Neurologist.......well we got off on a very bad footing though reading some posts on here I gather not all neurologists are as informed or understanding as they should be! What we really need is for our neurologists to actually have Epilepsy themselves as the general concensus of opinion appears to be that seizures are not only very varied but also difficult to explain. I asked to be referred to a neuro having not really needed one for many years as I was concerned about the change in my condition. Well this slip of a girl, barely out of med scool tried to tell me that my symptoms weren't Epilepsy & that I had most likely grown out of it many years ago with the Phenobarbitone probably causing my current 'symptoms'. In fact she didn't even want to do an EEG as she was sure it wouldn't show any signs of Epilepsy. Thank God I dug my heels in! The symptoms I described to her at that time were what I used to have as warning signs of a Grand Mal, thankfully I now only appear to be getting the warning signs or aura as they're more commonly known now. It's like when your body keeps nodding off to sleep for me & can actually go on for quite a while....she didn't believe me. Proof of it being Epilepsy is that one time years ago I had that aura for well over half an hour before succumbing to a Grand Mal where I fell down the stairs at work Further proof was that the EEG I insisted on with my latest neurologist did in fact show up ongoing electrical activity. So much so that I am now not allowed to drive. I don't drive anyway so that's not a problem for me plus I get a bus pass because of my 'disability' so no biggie on that score. So I had the dubious pleasure of watching her eat her words when I went back to see her but it was a hollow victory really though as I would have given anything to not be blighted with this illness but I truly am one of the lucky ones who has managed to lead a pretty normal life.

From what I gather I'm not a candidate for surgery as I thankfully haven't had enough full blown seizures to warrant risking surgery. Are you now seizure free Zolt? My son's friend's Dad barely went a day without a seizure until he recently had surgery & it transformed his life, he's a completely different man by all accounts

 

[Nakamova]

Hi Goldenagerockchick!

Do you know what area of the brain your seizures arise from? Usually autonomic auras (nausea and other stomach sensations, rapid heartbeat, shortness of breath, feelings of warmth or cold, etc.) are associated with regions connecting the frontal and temporal lobes, as well as the amygdala and the supplementary sensorimotor area of the brain.

Psychic auras that feature unexplained emotion (fear, sadness, anxiety, elation, sense of doom, deja and jamais vu, flashbacks) are associated with the temporal neocortex.

I'm glad you were able to stand up to the newbie neuro and prove to her that your symptoms were epilepsy-related. Let's hope she takes the lesson to heart and is both wiser and more humble when the next patient comes along.

 

[Goldenagerockchick]

Thank you Nakamova. I believe it may be the temporal/frontal area from what I've read on the internet but don't know for sure, Im going to try to remember to ask at my next appointment in April. A very recent thing I have started experiencing is a 'buzz' at the back of my head towards the top of the nape. It passes in seconds but is very distinct. One thing I do know from the EEG is that in the mornings it would appear my heart rate can drop to as low as 38 bps. And yes I get quite a lot of deja vu, again I thought that was just something everyone gets from time to time but am beginning to wonder now!

What a complex condition Epilepsy is!

 

[redracyz28]

As a teenager, my EEG showed right temporal lobe epilepsy. Later, my EEG showed right/left temporal lobe epilepsy. Now, they said the EEG is consistent with idiopathic generalized epilepsy, specifically the juvenile myoclonic syndrome ( I am 55). Now, I am so confused. At times I am not sure if I am having seizures or am I just crazy? LOL! I just started a new AED, zonisamide, and I am going in to get results from a three day monitored EEG tomorrow.