YES! DEFINITELY! I was on Dilantin back in the mid-70s. This med caused severe gum issues...heavy plague, tenderness, inflammation, bleeeding. I had it bad. My teeth haven't been the same. I continue to have dental problems.
A doctor told me that our meds also can cause dryness of the mouth thus eliminating the saliva that is needed to help keep our teeth/gums healthy.
Rinsing out in Hydrogen Pyroxide was helpful to me in regards to the heavy plague.
Nere, what med(s) is your brother taking? Back in the med 70s, I was prescribed mysoline. This med caused many unwanteds. I was grouchy. I was violent to family/friends. I recall it as my "jekyll-hyde" syndrome.
My mom insisted that my med be changed to something else. She was not informed of this personality change prior to it being prescribed. Once the med was out of my system, the split personality was gone.
I have found it most helpful to speak with a pharmacist in additon to the doctor regarding questions of meds, interactions. etc.
Candi, I'll see if I can slow Dana down so that she can offer her viewpoint.
Nere, is your brother seeing a general nuerologist or an epileptologist(seizure specialist)?
like candi, I am not a doctor. I had a temp lobectomy in '02. My doctors often asked me if I was hearing voices or had any thoughts of hurting myself. Fortunately I haven't experienced any of them.
In addition to Candi's suggestions, I too would like to wish your brother and you the best. Do keep us posted on how he is doing. Or, simply drop in to share with us whenever you need to share or vent.
The lobectomy was my decision cuz my seizures were becoming more motor and the choice of meds was running out. The fact that I worked with elementary kids at that time probalbly played a big part of my decision to be cracked open. The kids were actually a big support team for me.
The specialists I had in Mn felt that my seizures were probably moving too fast for an EEG to pick them up. So a lot of testing was done prior to surgery. Maybe your seizures are too fast to be caught on a general EEG. Or as you suggest, "too deep".
The young lady(Dana) pictured with me had the same surgery as I did some 4or 5 months prior to mine. We had the same med team. They thought it would be good for me to speak with someone who had the same/similiar surgery that I was scheduled to have. We made a good match and have become bests of non-blood sisters because of this union. We continue to talk with others about our surgeries or anything about ep that one is concerned about.
Hope you keep adding hours to your seizure-free period. Keep sharing with us.
I have been on those that you have listed plus many others. I am currently on Keppra XR and Oxcarbazepine(Tripeptal). Before my lobectomy I was on Topamax and Lamictal in additon to the ones I first mentioned.
This roller coaser ride of meds has been a diffiicult ride. I too don't understand why the doc is against increasing your meds. Mine went up and down many times.
Most of my EEGs were negative for seizure activity. The sleep deprived EEG was most effetive for me in regards to showing seizure activity. My meds were also decreased prior to these tests in hopes of giving the seizures room to surface. Have you had an EEGs of this type?
I haven't any info to share with you about your sensations. But I would to share that this is a wonderful site to learn, encourage, and share with others who live with or have a loved one with ep. When you have the chance explore some of the other conversations and you might just find some useful any info or make a new friend.
Like Candi, most of me EEGs were w/o any seizure activity but the seizure activity was happening.
My seizures changed over the years. They initially looked like the simple partial(absence) type so the docs put me on the med that was for the petit. When seizure activity did show it came from an area that didn't produce absence seizures. A now med regime was soon begun.
As more time passsed, the seizures continued to change in severity. No tonics but just more motor( walking around, changing clothes, taking phone calls, etc.) I moved about on automatic.
One test that helped my docs locate an seizue origin site was the sleep deprived EEG. I was to stay up the entire night prior to the test. Also my meds were decreased in a hope that the absence of my "full' med dosage would bring on seizures that could be caught on the EEG. It did what was hoped for. This ewas successful for me but a decrease in meds prior to such a test hasn't always been effective.
Thanks for staying with your BF and searching out info.
Oh boy, this is bad news. I'm so sorry to hear about this confliction.
Remember what Candi and I said about his not knowing how to receive support/love because of earlier experiences? Plus possible embarrassment?
I am also sorry to hear that he doesn't what to partake with us. It has helped me quite a bit to be able to openly share with those who understand. Once again, maybe he simply is not used to getting honest support.
As for you, hang in there and continue to be his friend, even from a distance. I think you should grant him his time to sort this out cause when we are pushed we tend to naturally shove back which can create further unwanted division.
Please keep in touch with us if simly to drop in to let us know how you're doing. My email is open to you also.