What was your experience like? I am going in the not to distant future (I should know when after I meet with a neurologist from Brigham and Women's Hospital this morning. I have never been to a center or have any testing (that I know of) other than annual (or every 2 years) EEG and the initial portable EEG for 48 hours when I started with my first neurologist back in 1997. Because my older brother had open heart surgery as a few months old, the focus back in the early 1980s after I started… read more
@A MyEpilepsyTeam Member
First, it's always good to have a family member or young friend with you when you go see your neurologist. Having your sister with you is highly intelligent. I normally was taking my mother with me, but she passed away a year and a half ago (just before the corona virus hit the USA). Next, as I have written to almost everyone else----keep a notebook of all of your seizure and epilepsy history. Write down the dates, times and severity of your seizures, your doctor appointments, in case you forget to take a dose of medication, and bring it with you to every appointment for two reasons----our memories aren't the greatest and our memories are getting worse as we get older. Keep that notebook close by and in reach. Also, go to your local pharmacy or police department and see if they have a medical card that you can keep in your kitchen and one for your car. You don't want to get into an accident and not have that material handy, the same goes for a house fire.
Hi John D. I was just in the Epilepsy Monitoring Unit (EMU) in March for 6 and a half days. I had the full 26 EEGs electrode array and 5 EKG array so had to stay loosly belted in bed or belted in a chair. Whenever I moved from one place to another I had assistance and the same going into the bathroom where they would wait outside the door patiently. They were very nice and helpfull.
Bring some comfy PJ/lounge pants/shorts and button tops are great, but very loose T-shirts also worked for me. They would unhook me assisted for short periods when needed to move and adjust things and change clothes.
Normally they encourage visitors even overnight spouse but because of Covid I was alone and only had a couple of brief visits. Bringing a laptop/pad and phone with chargers is a must because they will be most of your entertainment. Message me and others here for support, I'd love to help.
They had me off all meds in 2 days which felt real lousy.
Food was a problem for me because I have dietary restrictions and had few options and I also felt horrible in withdrawl from the meds anyway. If I do it again I will arrange tasty food being brought in from the outside like pizza etc. They're fine with you bringing food in.
The strobe light gals came in several times to try to trigger seizures but it didn't work with me, which tells me I'm not likely photosensitive. By the third time I just relaxed and enjoyed the light show. They did not use hyperventilation on me because of Covid precautions.
I was sleep deprived on days 3-4 which meant I could only sleep like 3 hours a day, and then I couldn't sleep after that on days 5-6 then because my biological clock was so screwed up.
They kept talking that I probably had psychogenic PNES seizures until the last night when I finally surprized everyone by having 14 focal seizures in the last 7 hours during a cluster and went home still seizing. I think they try to get at least 4 or so seizures so it was a success and it was a joy getting out of there. We did not find out they were actual seizures until 3 weeks later.
"It is not fun" is an understatement but you can do it, and it needs to be done so they know more about your seizures. Let me know when it happens and I can support you.
When They do a MRI, it's to see how clear Your brain is. If You've been having a problem the MRI catches, not clear but white matter and how much You might have. That's when the Doctors will do more testing for exactly what it is.
I spent 6 days in the hospital for long term monitoring. They did every possible form of torture to invoke but I didn't have one. The brain has a mind of it's own. 😂
@A MyEpilepsyTeam Member
As I wrote, get a steno notebook to write your seizure activity and medications down. Do that and bring the notebook to all of your appointments with your neurologist. Your doctor will LOVE it. Also write down if and when you forgot to take a dose of medication or even if you bumped your head on something. See, I'm a TBI survivor---I don't know why you have epilepsy.
We never share your personal information with anyone.