Simple partial seizures and patterns/activity

[StaceS]

Hi Everyone
Seeing a specialist in a week and tryi g to put some notes together.
Finding it tricky to do a seizure diary persae, as mostly what lm having is sensations and wierd symptoms.
Just wondering if anyone else with SPS has noticed if they are more prevealant day/night/resting etc.

I seem to have random symptoms during the day, but notice a lot more activity in the afternoon and at night. Especially when lm resting. I have never lost consciousness. But have tingling, olfactory hullucinations numbness, sometimes hear noises, muscle jerks, fine tremors or internal sort of shakiness distorted feelings etc. Still waiting to find out if this is actually epilepsy or not. I am finding it hard to describe symptoms or patterns. A d trying to understand what is happening and how to put it to paper.
If anyone would be a le to give some feedback thatwould be great.
Thankyou

 

[Blonde Angel]

Hi Stace
I'm in a different situation to you, but I find that if you write yourself a list of everything, it's best to state this to the doc...may be tedious but..
What may be trivial could be a piece of sorting out an issue that's affecting you negatively.
there may be certain times or a pattern to when you may feel certain stuff.

I have to go by behaviors by my girl & I don't get the luxury of knowing what she feels.

 

[StaceS]

Hi Blonde Angel
Thank you for that, l have so many random bits and pieces noted down, l got to try and get it in order or try and make sense of it (not, lol �&#56867.... It must be so hard not knowing what your daughter is feeling. I have two beautiful girls myself, and as mums all we want to do is help and do the best we can for our babies.... Thanks for answering me, still not sure myself if this is or isnt - but l will hopefully find out soon! Nice to hear from a fellow Aussie!
All the best to you and your beautiful girl
Stace

 

[masterjen]

Stace: what you just wrote should be descriptive enough for most neurologists. From their he/she may ask you questions to help you elaborate. One thing I would add is how long these events last for. For instance does each one last a split second but occur several times in a row? Or does one event continue for, say, 10 seconds and then you have no others for a few hours or the next day? Or . . . ?

 

[StaceS]

Thanks Masterjen
That's the part lm struggling with
Some days it 'seems' almost endless a tingle, cramp, spasm, etc etc here & there....
Other times it seems to follow a bit of a pattern. Each symptom is normally very brief (say seconds) before they move around. Normally starting in hands feet hair/face and spreading. I'll get cold breeze like sensations and hot spots with small rolling spasms and twitching. It almost always on my left side but sometimes l get small or lesser symptoms spreading to my right side. If it does move to the right side it's always a lot stronger and more consistent things happening. Im starting to get a bit of a pattern with that now it happened a few times.
A couple times l sort of ended up shaking all over biting my tounge, but never lost consciousness. The olfactory come and go, then can dissapear for a month or longer and then will just hit me out of the blue. Bombard me constantly for a day or two then l might just have a few here and there for a couple of days after or so after that then they go again. I feel totally wiped out and get very foggy tired when that happens to me. I also find my symptoms are stronger. I'm not sure if this is epilepsy or not, l'm on a small trial doseof Epilim (just increased to 200mg) twice a day pre specialist. I think some of the smaller symptoms are less noticable, and l'm less tired during the day. Hopefully l'll find out soon what's happening either way and how to improve it....
Thank you

 

[valeriedl]

Stace: what you just wrote should be descriptive enough for most neurologists. From their he/she may ask you questions to help you elaborate. One thing I would add is how long these events last for. For instance does each one last a split second but occur several times in a row? Or does one event continue for, say, 10 seconds and then you have no others for a few hours or the next day? Or . . . ?

I agree with this. If you know when they happened try to write down the date too. This way your neuro will know how many you are having a day or a month.

I also write down anything that's happening on a regular basis, even if you think they may not be seizure/med related they might be. Let him know if there are any meds that you take on a regular basis for things. If you are prescribed any meds the two could cause reactions with each other.

I make sure I write down any questions I want to ask him because 9 times out of 10 I'll get home and realize I forgot to ask him about it.

I write down anything that he tells me that are important. These are things that I always forget the details about when I need to know them.

 

[Belinda5000]

I write my seizures down on my calendar and how many I had.
I'm calling my neuro's office tomorrow, and he'll most likely return my call tomorrow evening or the next day.:e:

 

[StaceS]

Thanks guys! Seeing an epilepsy specialist this time, so hopefully he'll be easier to talk to when l try to explain whats happening

 

[Blonde Angel]

Describe and record what you feel, observations, experiences etc otherwise you will forget.

When I go to appointments, I have my trusty notepad.
All the best Stace

 

[cawhitern]

I just happened on this thread but maybe this will be helpful: I have an app on my smartphone called"Track It". It's for tracking seizure activity, time, length, type, any aggravating factors, mood, and a place to add notes. I keep my phone with me at all times and record everything. It can even record a video of the seizure. Hope this helps!