Hello everyone. I am a 44 year old mom of two wonderful boys (ages 17 and 19) and wife of a very supportive husband of almost 23 years.
About 12 years ago, I was having a lot of what I called "dizzy spells". I would never lost consciousness, but suddenly the room would start spinning and I literally couldn't see anything, so I would just shut my eyes and put my head down until it would stop (maybe 20 seconds long). I would usually get an aura before it would happen and then my head would feel very strange the rest of the day after it would happen. It would happen periodically and I finally mentioned it to my neurologist (for migraines).
She said they sounded like seizures and ordered an MRI and EEG. The MRI was fine but he EEG I failed in the temporal lobes. She said they were simple partial seizures and I was put on Topamax to treat both the seizures and the migraines. Topamax worked great for both (the seizures disappeared and the headaches were helped tremendously) for about 2 years until my body decided it couldn't sweat anymore. So, I switched to Zonegran. Seizures still gone, but didn't treat migraines as well. Stayed on it for about 4 more years until I convinced my neuro to let me go off since I never had another seizure. I also passed two EEGs.
So for the past 6 years, I have not been on anything for my seizures and haven't had any. Migraines have been killer, but that's another story...So, about a month ago (during my period), I start having that aura that I used to get before the actual seizure. It was happening every day, most of the day during my period. I went to see a new neuro and she said that the aura is actually a seizure, which kind of scared me. She also said that she isn't convinced that I'm actually having seizures. She said that migraines can cause visual disturbances just like I described and aura type feelings without even causing pain afterwards. And because I failed my EEG doesn't necessarily mean anything. She said to wait a week when I was off my period, get off all caffeine and let her know what happened. It was better, but I did have that feeling a little bit, so she decided to schedule an EEG and put me on Zonegran. I am having the EEG next week.
So, now my question about Zonegran. She started me at 100mg for 7 days then 200mg. Well, it's going ok. The only problems I'm having is an upset stomach (which is not really that bad, and I can handle), and feeling a little more sleepy, but the one I'm really more worried about is I'm feeling itchy.
I've researched it to death online and am finding conflicting results on whether this is normal or not with zonegran (well, Zonisamide in my case). I really didn't feel very itchy on 100mg, but on 200, it really hit. My thighs were so itchy the other night. I scratched them so hard that I had bruises in the morning! I kind of freaked out about it! So, I'm being much more careful with my scratching and I'm not bruising anymore. I would like to scratch more than I am, but I'm ignoring it. I don't have any rash, just an itchy feeling. It's not there 24/7, but it is there a lot.
Does anyone else have this with Zonegran? Does it go away with time? Is it possibly because I went up to 200mg so quickly? Could it be something more serious?
And now I'm more confused than ever because I don't even know if I'm having seizures or not. I have not had the "aura" since being on the Zonegran, but she said that that could be because it also treats migraines so it's hard to tell. I don't know what to think.
Sorry this got so long. I just have so many questions.
Thanks for listening and providing any help!
Jane
About 12 years ago, I was having a lot of what I called "dizzy spells". I would never lost consciousness, but suddenly the room would start spinning and I literally couldn't see anything, so I would just shut my eyes and put my head down until it would stop (maybe 20 seconds long). I would usually get an aura before it would happen and then my head would feel very strange the rest of the day after it would happen. It would happen periodically and I finally mentioned it to my neurologist (for migraines).
She said they sounded like seizures and ordered an MRI and EEG. The MRI was fine but he EEG I failed in the temporal lobes. She said they were simple partial seizures and I was put on Topamax to treat both the seizures and the migraines. Topamax worked great for both (the seizures disappeared and the headaches were helped tremendously) for about 2 years until my body decided it couldn't sweat anymore. So, I switched to Zonegran. Seizures still gone, but didn't treat migraines as well. Stayed on it for about 4 more years until I convinced my neuro to let me go off since I never had another seizure. I also passed two EEGs.
So for the past 6 years, I have not been on anything for my seizures and haven't had any. Migraines have been killer, but that's another story...So, about a month ago (during my period), I start having that aura that I used to get before the actual seizure. It was happening every day, most of the day during my period. I went to see a new neuro and she said that the aura is actually a seizure, which kind of scared me. She also said that she isn't convinced that I'm actually having seizures. She said that migraines can cause visual disturbances just like I described and aura type feelings without even causing pain afterwards. And because I failed my EEG doesn't necessarily mean anything. She said to wait a week when I was off my period, get off all caffeine and let her know what happened. It was better, but I did have that feeling a little bit, so she decided to schedule an EEG and put me on Zonegran. I am having the EEG next week.
So, now my question about Zonegran. She started me at 100mg for 7 days then 200mg. Well, it's going ok. The only problems I'm having is an upset stomach (which is not really that bad, and I can handle), and feeling a little more sleepy, but the one I'm really more worried about is I'm feeling itchy.
I've researched it to death online and am finding conflicting results on whether this is normal or not with zonegran (well, Zonisamide in my case). I really didn't feel very itchy on 100mg, but on 200, it really hit. My thighs were so itchy the other night. I scratched them so hard that I had bruises in the morning! I kind of freaked out about it! So, I'm being much more careful with my scratching and I'm not bruising anymore. I would like to scratch more than I am, but I'm ignoring it. I don't have any rash, just an itchy feeling. It's not there 24/7, but it is there a lot.
Does anyone else have this with Zonegran? Does it go away with time? Is it possibly because I went up to 200mg so quickly? Could it be something more serious?
And now I'm more confused than ever because I don't even know if I'm having seizures or not. I have not had the "aura" since being on the Zonegran, but she said that that could be because it also treats migraines so it's hard to tell. I don't know what to think.
Sorry this got so long. I just have so many questions.
Thanks for listening and providing any help!
Jane