one more day...

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ramona11

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Episodes are getting more and more frequent. Home health nurse was very concerned when she came on Friday and she confirmed that they very much looked like seizures to her. She was able to call the new neurologist and get my new patient appt moved from this Thursday to Tuesday, so I only have one more day to wait. She also made a call to my internal med doc's office for me about the episodes and they increased the Topamax back up, although it has not helped at all. I have had 29 episodes so far today and the day is not over yet... They did tell me to go to the ER if I didn't get better, but I know they won't do anything for me there - been there, done that... I am worn out... Wondering if I should call neuro's office tomorrow or just wait until Tuesday. Does one day really make a difference?

Ramoa
 
You might want to give the neuro's office a call tomorrow. They probably won't be able to get you in and you'll have to wait till Tues but at least he will know what's going on and be more prepared for it.
 
Hi ramona11,
I'm sorry you are having a hard time with the seizures. I would get ahold of your neuro today and let them know what's going on. I found that when I was taking Topamax the drug increased my seizures and I had 23 in one month which is sky high for me. I am wondering if this could be the problem. I wish you only the best of luck and May God Bless You!

Sue
 
Waiting can be so anxious; don't forget to write everything down for tomorrow though so you don't accidentally leave out any details. Good luck and hopefully you'll get the answer you deserve. :)
 
Thanks, everyone. I think I have made it through today and have all of my stuff ready for tomorrow. Can't think real well right now, so it's a good thing I got ready early. ;-) Will update after the appointment.
Ramona
 
I just got home and am waiting for a phone call from the doc. I had multiple episodes while I was there and he had them do and EEG. He was going to read it and the tech said, "He will call you if there are any abnormalities." Ugh. I hate it when they say that, but I know they are supposed to. However, other things she said/did lead me to believe that she did see activity on the EEG. One episode started RIGHT as she got me hooked up and she noted that my right hand was starting to move without looking at me. She also asked, "When did you start having seizures?" after that episode, as she was typing notes. I am wiped out and really hate waiting, but that is where I am at right now. My son was with me and his impression of the doc while I was having one in his office was that he seemed to recognize what was going on. I guess we will see... I will update once I hear back from him. IF I hear back from him. I am so used to doctors not calling me back that I guess I am a little skeptical. :ponder:
Ramona
 
So. No news is good news I guess? I am glad to hear that your son is on board. He knows what is going on and can support you in some way even if that is just going with you to the doc's. My 14 year old is scared shirtless about seizures. He does not want to visit my j house from his mom's. That hurts.
 
Hi Ramona11. I would say to give it 2 weeks or so. Call and ask the status of your EEG results if they don't get back to you. Unfortunately I too have had a doctor who wouldn't tell me the in depth results of an EEG. Be persistent in calling the doc. Try your best to get hold of a secretary or nurse and ask for the EEG results to be mailed or faxed to you. Not only will this give you insight into what they found, but if you switch doctors you will have the records to show them.

My last doctor did nothing to stop my seizures even when the EEG came back abnormal. I found a new epileptologist who is very transparent about the details. It might be worth considering.
 
I was kind of thinking that the fact that he didn't call back right away meant that it wasn't serious enough to really worry about. My son who went with me got the feeling as he was watching my episode that he seemed to be recognizing what was going on. I have to take his word for it, since I could not open my eyes. ;-) The doc did ask me to count backwards from 20 when the episode started and I tried, but I couldn't really talk well enough to get past about 18. I was aware - I just couldn't vocalize well. Why would he ask me to do that? To see if I was conscious?
 
It's a good thing that the episodes occurred at your appointment so that they could record with the EEG. I do know that movement interferes with the EEG, so it may have been interfered when your right hand moved, especially if it had some force to it. That's why during an ambulatory EEG you have to write down when you walk, use the restroom, climb stairs, eat, etc etc. It has been a week so maybe you should call for the results if you haven't received them yet or check online to get the full results and not a one word response over the telephone. You'll be surprised what's hidden in your notes.
The EEG can tell if you are aware of your surroundings or not so I'm assuming the tech wanted to test your awareness level and see if it properly correlated with the EEG. I'm not a neurologist or a tech though so I can't be certain about that, but just a guess.
 
Well, they did call with the results and said that the doctor did not see any sign of seizures on the EEG. That is a good thing, as I don't have to start all over with a new medical issue and I can come off of the Topamax now. I am still left with questions, but I see my Movement Disorder Specialist soon and will talk to him about my concerns.

Thank you for all of your help and information.
Ramona
 
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