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What Have Your Experiences Been Like On An Epilepsy Monitoring Unit?

A MyEpilepsyTeam Member asked a question 💭
Chattanooga, TN

I will be admitted to an EMU soon. They estimated stay is 3-5 days but could be more, could be less. Basically a 24 hour eeg for more than 24 hours...they want to take me off my medication and catch a seizure. I was diagnosed with epilepsy at 2 and had a 24 hour eeg at 5, I don’t remember it. That was the last long-term EEG I’ve had. I’m terrified. I’m on other medications they might be taking me off of as well. I could get very depressed, hallucinate badly, vomit, shake, sweat, cry, tremble… read more

December 5, 2020
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A MyEpilepsyTeam Member

That's similar to me with balance these last lot of seizures have made my balance worse. Went to the toilet during the night I was holding on when I got to the bedroom door i fell and hit my head on something metal. I keep falling and hitting my head
Merry Christmas and thank you for my hug.

December 24, 2020
A MyEpilepsyTeam Member

This is actually a good thing to have I've had several if not more myself . they just want to catch sezuires to see the electrical activity in your brain as you have sezuires to see what medications will work best for you or changes in what you are taking at the present need to be made a higher or lower dosage. My first one the first night they gave me my regular dosages and had me do my regular day in bed and next I had take lessened amount of my medication and they had me hooked up to a monitor to alert them to sezuires I was having while asleep. Then the next day k was given no medication as I slept all day and ask ed to stay awake all night and press a call nurse button when I was having a sezuire so they could watch and ask me questions. And the next day I was giving my day meds but not my night time meds and asked to stay awake all day and night and vise versa all the while I was checked on by the nurses and doctors and both my parents were able to stay with me the whole time. I was fed but I could bring snacks and things that mad me comfortable and felt safe. Just let them know what happens when your medication gets lowered or you take to much or you forget to take it all together this will give them more information and more to go on and what to expect when you and the doctors start the EEG test.I myself have had epilepsy since birth and started to have my sezuire disorder at age 5 from a TBI so I was fully aware of what to expect if you're not you should tell your doctor and he can fully explain the whole process and procedure and what to expect to you. You'll do great there's nothing to worry about.

December 5, 2020
A MyEpilepsyTeam Member

First of all AngelaShmangela relax it is not as bad as you think. It is very good test to tell your neurologist what kind of seizures you have and what treatment will be good to use. I had a 5 day and they will ween you off of your meds but you will be under observation the whole time. The best way to get through the EEG is to bring yourself a good book, puzzle and an ipod of relaxing music. There is a lot of attention given to patients as they are recording you to catch when you do have a seizure. If you are interested, you can go to YouTube and do a search on what goes on during a EEG. As far as your brother staying with you, that might be questionable due to the current pandemic. I would check with the hospital you are going to be staying for the week and see if they are allowing visitors. You will be safe and well taken care of during the test.

December 5, 2020
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A MyEpilepsyTeam Member

I have had great experiences in Seizure Unit at the hospital. I had the 5-7 day Video EEG’s 3 different times.

One thing to expect, is that the staff will be decreasing your meds , by a certain amount every day. They are purposely wanting a good big seizure from you.

During these visits, I always packed myself an activity bag . Stuff like reading books, puzzle books,small radio ( now days you can download radio apps on the cell phone ) playing cards and ect. If you are in a true seizure unit , the whole area will probably be carpeted. The staff are going to want you active, like walk around or hang around the leisure room maybe chat and play games and puzzles with others that might be there , or just watch tv 📺 .

Once they get the results they are looking for , you will soon go home.

December 5, 2020
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , You’re very welcome.😊 I got lucky last year & ran across a post of a girl who had just had an in hospital Video EEG or something & so I got some info from her on what to expect. So maybe a couple extra pillows might help, don’t be afraid to ask for them. You talked about your anxiety. Well, I’ve been sleeping with my teddy bear that I got ever since I was 2 that I got when I turned 2 & my arms are so used to having something to lay on when I lay on my side & so I don’t remember but maybe when in the hospital I may have taken a smaller different bear & slept with it. So if you have a stuffed animal you might could take that & cuddle with it whenever you want while there, like if you get nervous, anxiety, stressed, etc. Just an idea, it’s up to you. Good luck. Your friend in Texas, Becky

December 5, 2020

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