Charts for Dr's appointment tomorrow!

[Bergoomay]

Good morning all, I have been keeping track of the episodes I am having to the point that I know the time of day, number per day/month. I am going to the Neurologist tomorrow and plan to bring this data charted out. So far, I have a chart which reflects the following:

1. Number of episodes per day from June until yesterday and a star representing the start date of my menstrual cycles.
2. Number of episodes by month from June until yesterday.
3. Line chart for the number of episodes in a specific time of day.
4. A pie chart reflecting the number and % of episodes in a specific time of day.

Are there any other data points/charts which the community thinks would be helpful for a Neurologist to see?

Thank you in advance for your advice!
Connie

[Nakamova]

Sounds pretty thorough! Are your seizures all the same kind? If not, then a description of the different kinds might be useful. Are you on meds? If so, you might want to have a notation somewhere of when you started and how long it took to get to a target dosage.

I hope your neurologist is receptive. Let us know how it goes!

[Endless]

You must be using "seizure tracker!"

If you know any specific triggers in addition to hormonal (like missing a dose, or having a few drinks), that would be useful, too. Also medication levels and any changes in your medication.

[Bergoomay]

Thank you Nakamova. My episodes are the same just sometimes less severe. I do have the med levels on the daily chart as well so he can see the ramping up and down on the two meds I have tried thus far.

Endless, I actually built this in a spreadsheet last weekend so I could keep track of it electronically and create charts, pivot tables, etc. I have not kept track of drinking because I normally only have a drink about 2 times a month but have started keeping track of it now that I am training again for a half marathon. It will be my first half since I got sick in June so I am looking forward to being outside running again.

Thank you both for your feedback; it is greatly appreciated.
Connie

[Endless]

Another thought... did your doctor give you a preferred format? Like a sheet to fill out? Mine did, and wants it in that format - no others will do. So I keep a set of double books (lol) One on seizuretracker.com, and then I transfer the info onto his little sheet.

P.S. Good luck on the marathon!

[Bergoomay]

Thanks Endless. My Dr has never said a word about charting these so I am sure he has no specific format and if he does, I will not be a happy camper considering he has not even brought it up in the past. So far since late June, I have had 97 episodes and they are not even 100% sure it is E since one test says YES and the next says NO.

It has been a rough few months.
Connie

[Bergoomay]

Good morning all, I have returned from the Neurologist office and he was glad to get the charts as it showed him that the current meds were not working. He is now putting me on Carbatrol and taking me off Keppra. Are there any negative sides to Carbatrol that I need to be aware of from a patient perspective? This will be the third drug we have tried; so lets pray it works. He did tell me that my episodes are coming from the left front of the brain; which is more than we have known in the past.

Thanks in advance for any insights you can provide on this new drug.
Connie

[Endless]

Hi, Connie,

Look here to read TONS of feedback on Carbatrol. This is from real patients, with side effects that either didn't happen during the short clinical trial, or the doctor didn't take the time to report it to the FDA.

www.askapatient.com

Look here to get the "official" list of side effects in the package insert:
www.drugs.com

[Bergoomay]

Thanks Endless. These links contain some great information.

[valeriedl]

I do almost the same thing as you do with your dr, but it isn't so fancy.

I just mark down when I had the seizure, how long it lasted and what type of one that it was.

I also make sure to mark down if I had gone to any other doctor and for what the reason it was. I let him know if that dr had given me any meds to take. I'll mark down too if I was taking any over the counter meds, some sort of cold medicine or something like that, and had any type of seizure when I was taking them.

I make sure I write down any questions that I want to ask him so that I don't forget.

I keep all the info on the computer and print out a copy for him and a copy for me that I keep in a folder.

I'll bet your dr loves what you do. This saves alot of time trying to remember things and wasting half the appt. This way you have more time to talk about more important things and know what you need to talk about.

[Bergoomay]

Valeriedl, my Dr was surprised by the amount of information I was able to provide him. It allowed him the capability of analyzing the charts and understand the meds I was one was not working. He has changed my meds and we are hoping this one works.
If you want the charts, I can send them your way. They were created in excel.

[alivenwell]

Do you also track your food and drinks? It can easily be done either on paper or on a weight management site. I would imagine that can provide a good idea of gluten intake, if any, hidden caffeine, hidden ginkgo biloba, or some other seizure provoking chemical. A low sugar level can also mimic a seizure as well, so it may seem like a seizure, but it is not one.
I did not know some of the vitamins one should take prior to this website; nor did I know some foods/drinks one should avoid. It has been immensely educational for me to read other posts and what others have experienced with epilepsy.

[Bergoomay]

Alivenwell. I have started keeping track of food so I could draw those type of conclusions.