Hi everyone, Hope you all had a good Thanksgiving.
Mine was quiet one and had a yummy dinner.

I am in a dilemma. As many know I have refractory epilepsy. Am on three meds trileptal, keppra and lamictal. The Lamictal is mainly for purposes of mood swings. As I can not take enough of it for seizures. The other two I am on amounts that are not a "theraputic levels" due to a very sensitive body that reacts to too high a dose.

This is true for most of the drugs I have tried. so they can not be used. We have kinda run out of options.

Recently my seizure activity has increased. Yet when we increased my trileptal to an extra 300mg at 9pm. I woke up so groggy and felt this way all day. SO I do not feel it was "quality of life " to feel this way. So stopped that.

My main question here given the above. It was suggested I do a 72 EEG at home. Where they have to attach the wires with a high smelling glue. This concerns me as I am highly sensitive to smells of chemicals and get bad headaches and feel sick from it.

Given we already know I have seizures, the cause, they are erratic, Meds are very difficult to find for me. etc etc.

What is the point to having a 72 EEG? Where the side affects are going to be tough for me and given it is winter, I can not open the windows to get rid of the smell?

Would like feedback if there is any thanks everyone

Cedar

how long does the glue smell last cedar? the whole time? there is no alternative to glues?

could you put a plastic shower cap on?

what about trying one of those room air purifiers? keep a small one where you sit?

a friend of my husband had problems like this when they did home heart monitor testing. it sucks. the medical community needs to come up with options for those sensitive to the smells. honestly...those fumes can't be good for anyone!

Hi Cedar -- When I was twice in the hospital for that VEEG that could have lasted up to 14 days the "electrodes?" were attached with a glue that had to last that long but did not smell.

After they were attached my entire head was firmly wrapped with a sticky sort of stuff like a wide bandage and it did not smell either. Oh, it was ugly but it didn't smell.

Maybe you'll be getting the long term gunk that's easier to take instead of the 45 minute stuff that's so nasty??

I do remember how the regular EEG glue smelled and even burned a bit but they do have better stuff available. Won't just about any place listen to you if you insist - politely and nicely but still firmly - that you are allergic to the glue? Gee, I hope so!!

Hi Cedar,
I had a veeg done where I was in the hospital for at least 10 days and there was no odor to the glue that they used for the electrodes. You might want to tell your neuro about this matter first just to play it safe.
When I had the veeg the Dr was able to pinpoint the exact locations on my brain that were triggering sz. and what AED's would help me the most.
Correct me if I'm wrong but it sounds like you may have "Seasonal Seizures" where certain times of the yr. a person will have more sz. I know I always have many more sz. during the fall and winter than in the spring and summer.
If I may ask what's the least amount of AED's you have been on to help your sz.? The reason why I'm asking is often if a person is taking to many AED's the drugs will interact with each other causing more sz. for the person. I found that out the hard way when I was taking 5 different AED's at once and having 300 sz. a yr. After I cut myself back to 2 AED's I have had fewer sz. Here's wishing you well and May God Bless You!

Sue

Hi Well I was specifically told the glue smell is very strong, kinda like acetone. I was also told they must use a air clearing system just to put the glue on. That many people who come with the person getting it must leave. Was alos told that there are strong smell following over the three days at home.

So you can see why I who am very sensitive to smell am anxious to do it.

Porkette, You are correct it appears Fall and Winter are my worst times.

I have had more over the last two months, and especially in the last two weeks than I had in June- September. I had an average of 9 simple partials. In October I had 6 and in the last two weeks of November I have had 10 or more.

Then I was suggested to increase Trileptal in Eve to 300 more. Woke up the next day felt so lathargic and groggy I stopped.

Now your question re dosage amount
For the last 3 years I have been on 1800 mg trileptal, 1500mg keppra and lamictal 50mg all in one day.
Last June I was put on a oral contraceptive to se if it would help with the catamenial seizures. Well in July I had three great weeks and for 40 days in Aug-sept. great also.

So really confused.

I am leaning toward not doing 72 EEG at home nad not sure what if anything re increase of meds.
Fusturating though.
Thanks for all your thoughts

Hi Cedar,
I ask myself if your on to many AED's that are interacting with each other. I found the best AED for cateminal sz. is diamox because it gets rid of the extra fluids in your body that can cause sz. I would take the pill for only 5 days each month a week before my period and it made a big difference in the amount of sz. I had so then my neuro put me on it full time.
You might want to ask your neuro to do the e.e.g. right at the hospital so they can watch you to play it safe. I feel that the e.e.g.'s they do at the hospital are much more acurate than the ones at home but that's just my opinion. Here's wishing you well and May God Bless You!

Sue

Thanks Porkette,

Well I wanted to share the following:
Last June I went to a well known Ob gyn who has had good luck with women with seizures being on the pill all the time. So that is what I am doing and have since June 15th.

I have also realized the past year that stress and anxiety play a huge roll in my seizures. So since I was feeling stress around doing the EEG and the Dr. could not convince me it would give us that much new infor. I decided to not do the EEG. As soon as I cancelled it. I felt alot lighter.

So I just hope he seizure increase I have had in tow weeks subsides soon.

I have one question do you still take diamox? Is it a seizure med or a diuretic?
Just interested.
Thanks for all your support, keep in touch

Hi Cedar,
I'm still taking diamox and yes it's a diuretic and also a sz. med. I've been taking diamox since 1992 or longer and it has done wonders for me. The real name of the drug is "actazolamide" (sp?) I take 1000 mg. a day of the drug and it has made me lose weight since it's a diuretic.
Here's wishing you well and May God Bless You!

Sue

I was put on a diuretic in 98 and seemed but not sure to increase seizures. Thanks for the imput though. Will ask my Dr. about it. Do you still tkae it if you are on the pill full time do you know?

I know I ma gaining weight and not liking it.

Thanks, Cedar

Hi Cedar,
Check your private messages.

Sue