Recommendations for epilepsy centers?

js1980

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Hi, I was diagnosed with temporal lobe epilepsy in 2009. It was mostly controlled with one AED (lamotrigine) until 2018 when we had our first child. One of my main triggers is noise, and the typical sounds of a baby (crying, being excited, etc) trigger a lot of seizures.

My neurologist added Vimpat and then Oxcarbazepine. All 3 of them still did not control the seizures. I had to go on short-term disability in August of this year. At that time my neurologist referred me to an epilepsy center to find out if I was a candidate for surgery.

I had a terrible experience at the epilepsy center he sent me to. I was in there for 8 days and the care was terrible. I will not have surgery or any other procedures done there.

So my question is, have any of you had experience with epilepsy centers? Can y'all recommend ones that you've had good experiences at?

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The rest of this post is just me venting, but it might be useful to people who are being referred to a center. I chose to not publicly name the center I was in, but feel free to message me if you'd like to know the name of the center I was in.

Here are some of the reasons I'm not comfortable having procedures done (or even trusting their diagnosis) at the epilepsy center I was in:
  • The head epileptologist barely interviewed me. One of my symptoms is that I get very confused after having a seizure. He was upset that I used the word "confused." He kept telling me to find a different way to describe my symptoms. He saw me 2 days in a row and both times he interrupted me and left when I used the word "confused."

    After the second interview he told me to have my wife think on it overnight and then explain my symptoms the next morning. She came up with words like "disoriented," "can't focus," etc. That didn't make him happy. He said we weren't being specific enough.

    We have no idea what he wanted us to say.

    After speaking with my wife he got upset again and left. He said that the next morning a psychiatry intern would interview me, and he told the intern (in front of me) to not let me use the word "confused." After that I hardly saw him again. He came in a couple of other mornings and told me that my EEG wasn't showing anything. That was the extent of my interaction with him.

    It didn't help that they had cut all 3 of the AEDs and also my Adderall cold turkey. My neurologist had said they would wean me off them. I was having trouble focusing when speaking with him, and that made him even more frustrated.

  • None of the other epileptologists ever came by except for one 2nd year resident.

    I finally managed to speak with a different epileptologist, but only after I called my neurologist's office to complain.

  • One day no epileptologist or resident came by. The day nurse said it was because they were busy with a lot of patients. But that night the night shift nurse came by my room and just hung out for a while to keep me company. I asked her if she had to go since I knew they were very busy. She said that she had all of the time in the world because they only had one other patient that day!!

  • Going cold turkey off 3 AEDs and Adderall gave me the jitters for about 3 days. I kept bouncing my leg and rubbing my fingers together. They kept telling me to not jitter because it was interfering with the study. I did my best, but the Vimpat and Adderall both cause major withdrawal symptoms. The symptoms were compounded by the fact that I couldn't move around. I had to lay in the bed.

    I challenge anyone to go off those 2 medications cold turkey and then lay in a hospital bed and not move. Nobody has that much willpower.

    I could have started weaning off them ahead of time (especially the Adderall) if I had known.

  • I was using my laptop with their permission. In fact, my neurologist encouraged me to. I love to game but I can't play most games because the special effects trigger seizures. She told me to download some of those games and play them, and also to watch videos and movies that have lots of flashing lights.

    After several days, though, the nurses came by and told me that the laptop was causing interference, but that it was "not a problem." They said to keep using it because it might help trigger seizures.

    Then a couple of days later they came in and said that I shouldn't use it because it was causing too much interference.

    They then came back around and said to use it, but just to position it farther away from the EEG machine. They watched while I moved it, and said that the interference went away.

    Then on the day before they discharged me that some of my seizure activity might have been missed because the laptop was still causing interference.

    So were the first few days wasted because I was using my laptop? Were all 8 days wasted?I have no idea. They wouldn't give me a straight answer when I asked.

  • There was a lot of miscommunication between the doctors and nurses. The doctors kept forgetting to write orders for stuff they said they'd do. For example, they said on several nights that they would write orders for helper medications (benadryl and ultram). Unfortunately they only remembered to do that one time.

    On a second night they wrote the order for benadryl but forgot the ultram.

    Every other night they completely forgot to write the orders. After several nights of that I asked the night nurse to call the on-call doctor and ask them to write the order. She refused to do that. She said they must have changed their minds about wanting me to take the medicines. However, the doctor if I was supposed to have taken the medications. He said yes, and he blamed the resident for forgetting to write the order.

  • They ordered sleep deprivation on several nights, but the nurses didn't know what that meant. One told me that she wasn't sure when I could sleep, so I should stay up all night. The next day a doctor said I could have slept. On other nights the nurses had me stay up until 3 a.m., 3:30 a.m., and 4 a.m.

  • Sleep deprivation was wasted on most of those nights. The doctors were ordering it because they were planning to do photostimulation (where they bring in a big machine with lights--kind of like a giant version of what they use when they do EEGs in their office).

    One night was wasted because the doctor forgot to write the order for photostimulation.

    The next 2 nights were on a weekend and the team to do the stimulation wasn't there. No epileptologists were there that weekend. It was just a resident and he didn't know that the photostimulation team didn't work on weekends.

    They finally came in and did the stimulation on Saturday evening, but by then I had slept (the nurses had allowed it because they didn't think the photostimulation was going to happen).

    The doctor wanted to do it again after I had been sleep deprived. They ordered sleep deprivation again for Saturday night and said they would make sure the team was there on Sunday.

    They said they would write orders for benadryl and ultram that night, but they forgot the ultram.

    On every other day the photostimulation team came by in the afternoon. I had been told to skip lunch but eat breakfast (they don't want you to eat before the test because they don't want you to throw up if you have a seizure).

    However, that Sunday the team came by in the morning. The nurses had let me eat since they didn't know the test would be in the morning.

    They were going to cancel the Sunday testing but I persuaded them to do it. I told them I would take the risk of a seizure or hyperventilation making me throw up. I just wanted the testing done.

  • They also took a VERY passive approach. I sat in the hospital for 8 days and they didn't do anything except try photostimulation and helper medications a couple of times. I finally complained about it to a nurse and she told me that the photostimulation and helper medications usually didn't work anyway, so not to worry about it.

  • I had to pick a neurologist in that hospital in order to be admitted. It was not my usual neurologist. The new neurologist's office was literally about 100 feet away. She never came by. After several days I called her office with my concerns. Her assistant came over, but the neurologist never even spoke with me. I've been her patient on paper for 2 months and have only spoken with her one time. I've messaged and called several times to try to get test results or other updates, but I can't even get her assistant to return my calls.

  • On several occasions nobody came into my room when I hit the "event" button. My seizures are partial complex, but there's a real risk of having grand mal seizures when suddenly cutting AEDs. What if I had a grand mal seizure after hitting the event button and nobody showed up? Would I have just kept convulsing until someone came by a few hours later to take my vitals?
I know that all of this might sound like I was being a difficult patient, but I promise that I wasn't. I was incredibly patient and didn't complain until the 7th day that I was there.

So, there is no way that I will ever have a procedure done there. Do any of you have recommendations for other epilepsy centers?

Thanks!
 

Nakamova

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Hey js1980, welcome to CWE!

Your experience at the epilepsy center sounds horrible. Where are you located? How far are you willing to travel? I'm in the Boston area, where there are four or five excellent epilepsy centers.
 

js1980

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Hey js1980, welcome to CWE!

Your experience at the epilepsy center sounds horrible. Where are you located? How far are you willing to travel? I'm in the Boston area, where there are four or five excellent epilepsy centers.
Thanks for the welcome :)

I am in the southeast but am able to travel. I'm close to an airport that has cheap flights to most major cities. My parents are helping with childcare while we take care of my health, and I have short-term disability income for a few more months. I'm willing to travel to get the care that I need.

What centers do you recommend?

Thanks!
 

Porkette

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Hi js1980,

I sure wouldn't want to go to the Epilepsy Center you went to, I'm sorry you had a hard time. I had a problem with one place
I went to also the Dr. did testing on me and told me there was no problems and I was faking the seizures. Then the neuropsychologist
came in my room and told me I was border line down syndrome and all of this was on camera while they were doing a veeg.
I ended up having a mediator come in with the entire group because I had had it with them and they were busted and put on
report. I later found a great Epilepsy Center in Rochester NY at Strong Memorial Hospital and I had right temporal lobe surgery
done and the Drs. did a lot of detailed testing on me before surgery and they told me the surgery would only reduce my seizures
and they were correct.

When it came to Epileptologist I found the older the Dr. is the better off I was my last Epileptologist did a DNA test on me and found
out I was drug resistant to all seizure meds out on the market and told me to start using cbd (med. marijuana) and that made a big
difference in my life for the better along with taking 2 Tablespoons of apple cider vinegar with mother in it in the morning before
breakfast.

My advice for Epilepsy Centers is either Strong Memorial in Rochester NY or try the Cleveland Clinic in Ohio they are very good also.
I wish you the best of luck and May God Bless You!

Sue
 

Bernard

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We have seen doctors at Methodist in Houston and UTMB in Galveston and League City. Experiences have varied. Our first experience with a neuro at UTMB was terrible. The doc we saw at Methodist meant well, was patient and listened. Other than pushing us to take the very latest meds all the time (ones that he had participated in administrating clinical trials), he was OK. But he was also very busy (too many patients) and eventually suggested we see another doc because he couldn't think of how else to improve my wife's seizure control. We went back to UTMB and her current neuro is foreign born with a thick accent. It's sometimes hard to understand what she is saying, but she is pretty awesome actually. I think we are finally making some progress with my wife's seizure control.
 
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