Thanks for the suggestion. A seizure tracker is on our list of to-do's. Before we create this tracker, it would be helpful for us to know which format you'd prefer for a seizure tracker - one that is more like our heart rhythm tracker or one that is more like our migraine tracker. Below are two examples:
Migraine tracker: http://www.medhelp.org/user_trackers/show/40757
Heart rhythm tracker: http://www.medhelp.org/user_trackers/show/10422
Probably the heart monitor gives the most value: eg, a way to indicate the number of episodes in a single day and the severity/length/type (eg partial, tonic-clonic, myoclonic, absence: I get all of these and it is important to note the difference. and their placement in time relative to each other.
As to the migraine style--I like that you can include the aura and postdrome phases, and for someone like me who tends to get a series of small absence seizures that build to myoclonics and finally to a grandmal--just seeing this sequence allows me to understand that I did have an "aura" even though, according to my doc, a true aura is only a minute or so long usually right before the event. So just having a column for aura in the event list would be fine for those of us suffering from this disorder.
However, as most of us will experience quite a long while of impaired conciousness and amnesia after 'coming to' from a grand mal, I feel that a way to indicate that and its length would also be useful for our doctors.
Thank you so much for working on this! The epilepsy community appreciates it!
A seizure tracker would be great! More like the heart tracker, but with some way to track auras. Also a way to track clusters of seizures without knowing the exact number.
I agree with the others that a tracker a bit more like the heart tracker would probably be the best approach, but I too wonder if there is some way to include aura or pre-ictal and post-ictal tracking in there as well.
I think also that it would be helpful to track seizure type. I wrote a couple from memory, and looked up a couple others. Here is a list of some common seizure types in case you will like to include them on the tracker: Primary Generalized Seizure, Absence Seizure, Atypical Absence Seizure, Myoclonic Seizure, Atonic Seizure, Tonic Seizure, Clonic Seizure, Tonic-Clonic Seizure, Partial Seizure, Simple-Partial Seizure, Complex-Partial Seizure, Secondary Generalized Seizure, Psychogenic Seizure, and Hypoxic Seizure.
I have been using a different online seizure diary for my son and have found it very useful.
If you search seizure tracker on google you should be able to find it. It is free and creates really cool graphs that compare medications to seizure activity. I have been emailing the reports to our neurologist prior to our appointments. It make all of our appointments much more productive.
Thank you all for your feedback. So it sounds like there is a general preference for something similar to the heart rhythm tracker with a way to track auras. We'll be working on this in the near future, so if there are any more requests regarding this tracker, keep them coming.
maybe a way to list the after affects like:
slept for ____ hours after
damage to inner mouth from biting,
Can anyone think of any others?
And thank you MH~
Yeah! A bunch of seizure types and meds too. So we can see what is helping. Also what kinds of seizures are happening. Symptoms like headache, dejavu, panic, feeling dizzy, tongue biting, sleeping, or cluster seizures. If there was generalization. Some way to track body movement and awareness level.
Just noticed this after my other post. Not well versed in seizures, as I am new to this, but I have sensations or neurological clues to an oncoming seizure. Could there also be something like that added into the tracker?
I will be very excited to use this tracker in the future! I think too that it would be especially helpful if we were able to track headaches associated with seizures. Perhaps as a symptom with a drop-down menu for severity. Additionally, symptoms such as automatisms, depersonalization, repetitive movements, loss of awareness, chewing movements, staring spells, and nystagmus may also be helpful.
Bumping this up. Wondering when the tracker will be in place???
Bumping again...seems to have been mentioned as a possibility back in March. Any idea when we might see it?
Unfortunately, we can't commit to any specific date, but it is still on our list of to-do's. We'll let you know when it's available.
Bump! It's been over 3 years since this tracker was suggested, and while I have been using another seizure tracker available elsewhere that meets my needs quite well, it would be handy to have all my trackers in one place (ie medhelp). You have so many other bizarre trackers available for conditions that are much more rare than epilepsy, it's surprising to me it hasn't been added. Epilepsy kills many many many more people annually in the country than breast cancer for example. The epilepsy community could really use your support.
Thank you in advance for looking into this again!