How to log your seizure activity?

[girlwithadog]

I've been told many times, and want to, to start a seizure activity log. Problem with that is at my appointment my nurse practitioner didn't tell me what kind of seizures I was having or what type or anything. I'd asked her and neurologist the appointment before about my other symptoms and they said it could be caused by seizures. However many psychological doctors have other theories, but this was before the epilepsy diagnosis.

So I have no clue what to record or when and if I did it would be a long large detailed journal pretty much. I experience so many odd things and pretty regularly that I don't know what's seizure related or note worthy or not. Examples are:
*Random blind spots
*Visual distortions (which I had during EEG)
*Ear ringing/wah wah sounds/sounds like you hear when you take one of those long flexible tubes and spin it over your head
*Difficulty talking/confusion
*Panic attacks/sweaty/clammy/tingly feelings
*Eyes rolling into the back of my head
*Dizziness/vertigo (even when sitting)
*Spacey feelings
*Foggy head
*Pressure in head/usually accompanied by the wah-wah sound
*Surreal type feelings

These symptoms typically only last 30 seconds to 3 minutes depending on the type of feeling. There are other feelings I get like these as well, it's a mess. They typically happen numerous times throughout the day as well. What's odd is that they happen in phases. Like when I have the episodes of confusion/inability to talk it's typically a bunch of those for a few weeks. Last time I had that feeling though it was before the drop seizure I had last year. Then I'll have the surreal feelings which often happen the same time I get the panicky feelings and they happen numerous times throughout the day for a few weeks. Sometimes I'll get a few of the symptoms happening during the same time frame but they come and go.

So how do I know what to document and what's not worth writing?

 

[Cint]

I would start by showing your doctors all these symptoms:

*Random blind spots
*Visual distortions (which I had during EEG)
*Ear ringing/wah wah sounds/sounds like you hear when you take one of those long flexible tubes and spin it over your head
*Difficulty talking/confusion
*Panic attacks/sweaty/clammy/tingly feelings
*Eyes rolling into the back of my head
*Dizziness/vertigo (even when sitting)
*Spacey feelings
*Foggy head
*Pressure in head/usually accompanied by the wah-wah sound
*Surreal type feelings

These symptoms typically only last 30 seconds to 3 minutes depending on the type of feeling. There are other feelings I get like these as well, it's a mess. They typically happen numerous times throughout the day as well. What's odd is that they happen in phases. Like when I have the episodes of confusion/inability to talk it's typically a bunch of those for a few weeks. Last time I had that feeling though it was before the drop seizure I had last year. Then I'll have the surreal feelings which often happen the same time I get the panicky feelings and they happen numerous times throughout the day for a few weeks. Sometimes I'll get a few of the symptoms happening during the same time frame but they come and go.

So how do I know what to document and what's not worth writing?

IMO, these are ALL worth writing down and showing to your dr. since they happen numerous times a day. The confusion/inability to speak sounds like a CP seizure. CP's and SP's usually only last several minutes and are easily confused with psychological disorders. Are you seeing a neuropsychologist and a neurologist?

 

[Nakamova]

Write it all down. That's the best way to look for patterns or triggers (regardless of cause of the symptoms), and once/if you start medication, it's a good way to gauge the med's effectiveness. All the symptoms you list sound like they could be seizure-related, but if you aren't feeling 100% sure about some of them, list them with an asterisk.

 

[girlwithadog]

I would start by showing your doctors all these symptoms:



IMO, these are ALL worth writing down and showing to your dr. since they happen numerous times a day. The confusion/inability to speak sounds like a CP seizure. CP's and SP's usually only last several minutes and are easily confused with psychological disorders. Are you seeing a neuropsychologist and a neurologist?

I'm only seeing a neurologist and have only recently been introduced to all of this. All of my blackouts were thought to be psychological up until two years ago when I had a grand mal seizure, so when I had the drop seizure, it was a lot easier after the grand mal to know it too was a seizure. Otherwise they would have likely diagnosed it as fainting like they have in the past. I don't think we have a neuropsychologist anywhere near me, I'm in a small town in South Carolina, not much around. Only 3 neurologists within an hour of me so I'm guessing the neuropsychologist is even less.

 

[girlwithadog]

Write it all down. That's the best way to look for patterns or triggers (regardless of cause of the symptoms), and once/if you start medication, it's a good way to gauge the med's effectiveness. All the symptoms you list sound like they could be seizure-related, but if you aren't feeling 100% sure about some of them, list them with an asterisk.

I was supposed to start medication about 4 weeks ago but chickened out and made an appointment with my neurologist to ask my questions before I dive into medication. I was diagnosed the day I was given medication and it was only my second appointment in the neuros office. I only saw one other neuro ever before and that was around 2 years before this neuro.

I see him Monday and will start to write everything down, just wish I could find a way to make it into a chart for easier writing, otherwise I would write a book in a month

 

[Nakamova]

There are online seizure journals that might be helpful. See http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[petero]

I have a hard time with that too. Especially reading about people who have partial seizures and stuff. Before I was diagnosed, I was wayyy off in my interpretation of what epilepsy was. I had probably a common misconception that it was just a "shaking thing". I had no idea about the different seizure types or different levels of consciousness, and different levels of unconsciousness, or subconsciousness, or altered consciousness, or conscience-ness... + pain = fun fun fun! whee!

After two observed tonic-clonics I was diagnosed. And I wasn't even "there" except for the aftermath. So I started researching wth epilepsy was. And I found out about partial seizures, complex partials, sleep seizures, atonic... and I was like "ack! - have I had these types of things go on all of my life?!?

Everyone experiences some effects like these things listed. Everyone feels daydreamy or sees optical fluctuations or feels faint/dizzy or has their ears ring from time to time or has panic attacks... don't they? If they don't, then I'm way more f**d up than I thought.

I payed attention to the things that got me diagnosed. I still try to put by the wayside the other effects I was unsure of, trying to keep an "innocent until proven guilty" type of mindset.

I can't keep a diary of every little fluctuation my life has otherwise I would be writing continually. I've considered that as an option but decided to stick with what got me diagnosed and that which I can "confirm" in a way, although it's still hard.
I keep a positive spirit about the notebook thing, that is until I have a hard tonic-clonic and don't want anything to do with anything. At that point it feels like shoving a notebook (or in my case app) in the face of someone mangled in a horrific car accident and asking them to write a diary about their experiences, because it will help them feel better.

But when I started thinking about all of this stuff, I started being very diligent about these things, and I wrote some things about how I started feeling light headed at some point, had weird vibes, had strange perceptions during certain events and things, and would have all kinds of things written, but then *bam* I'd have a tonic-clonic and writing is the last thing from my mind - and by the time I feel like writing about it I'm so removed from the incident it's difficult to document, but at least I've got some blurb to keep track of how often I have a t-c, and that's important.

 

[petero]

^- good advice above my posts -^

Cint and Nakamova are great resources for info here.

And welcome to the forum~!

 

[masterjen]

Try to make keeping a seizure/symptom diary as simple and efficient as you can. There must be some consistencies among them you can identify. I created a legend of sorts where I described my seizures and called them mild, moderate, strong, weird 1 and weird 2. Of course it doesn't matter what you call them. It saves writing time and if I want to add a note I can(e.g. (weird 1 except I also had a headache) That tells me a lot in very few words and makes it easy to just glance over a month's worth of seizures and symptoms and pull out anything that broke a pattern (like the headache) Works well for me. Maybe it'll be helpful for you.

 

[Cint]

Try to make keeping a seizure/symptom diary as simple and efficient as you can. There must be some consistencies among them you can identify....... Of course it doesn't matter what you call them.

Keeping a diary of seizures is very helpful in identifying the consistencies of the symptoms. But it does matter in what you call them, as there are many different kinds of seizures/epilepsy. What you call a mild seizure may actually be an 'aura' or a simple partial seizure. Or a strong one may be a CP. It DOES matter what you call them so the neuro can make the correct diagnosis.

It saves writing time and if I want to add a note I can(e.g. (weird 1 except I also had a headache) That tells me a lot in very few words and makes it easy to just glance over a month's worth of seizures and symptoms and pull out anything that broke a pattern (like the headache) Works well for me. .

Not all seizures are alike and not all patients are the same, so what works well for you may not work well for some one else. With me, depending on what type of seizure, CP or TC, depends on whether I have a tremendous headache afterwards. Sometimes I do, not always. Plus, sometimes, if one has had seizures as long as me, they can change over time.

 

[masterjen]

If you create description of some of the different seizure types you have that have consistencies it doesn't matter what you call them. It is your diary, and as long as you have a written description of what seizures 1, 2 and 3 are, it sure saves a heck of a lot of time constantly rewriting those commonalities. If when you see the doctor next and he/she gives you the proper term, fine. But in the meantime, let's make keeping a diary less onerous!

 

[Cint]

But in the meantime, let's make keeping a diary less onerous!

So, check this out: (Nak mentioned it earlier)
https://seizuretracker.com/

 

[Tralee A]

Welcome to the world of complex partial seizures. :hugs:
I have them too. Minus the noises. I get weird sensations in my chest/stomache too. Like when you swallow a huge mouthful of ice cream and it freezes the whole way down. well its like that but only in reverse (did I confuse you there?)

write the whole lot down.

As for the panicky feeling go for a psych. I'm working on that too coz my neuro said to. I freak out at the most stupid of times or lately cry over stuff.
you're not alone