I am sorry to hear about all your symptoms. I will try and be helpful. First, what is the evidence that you have epilepsy? A positive EEG finding that corresponds to your clinical manifestation? As you well know, basilar migraine can mimic seizure activity and how was this thought to be migraine and now seizure activity? What was the MRI of your brain read as? Isolated neurogenic bladder is not common, what are the thoughts of your neurologist?
I will assume that your workup showed that you have epilepsy, that is focal in origin (EEG focality) and the seizure activity is accompanied by change in consciousness (partial complex). Topamax is one of the newer medications on the market. It works well in controlling most types of epilepsy. We use it after the more widely used medications such as tegratol have failed. It must be started very slowly and increased in dosage until either side effects or seizure control is reached. The usual dosing is twice a day. Some of the side effects are cognitive (decreased attention, confusion, impaired memory) difficulties, kidney stones, and weight loss are the most common side effects. Some patients also complain about dizziness, drowsiness, paresthesia, and a nervous feeling. You can find more information in the PDR (should be found at your local library).
I hope that topiramide helps control your seizures.
CCF Neuro MD
yes, you are correct in assuming that the eeg showed temporal spike, but only once. I have have had several and eeg's including ambulatory.
It was also suggested that I may have a movement disorder vs. epilepsy. paroxysmal it was discribed as. I do understand that isolated neurogenic bladder is rare, but have not been told how rare.
It is the thought of the current Neuro that the bladder was overstretched and lost elasticity, but I am not truly convinced as I beleive it is a sphincter problem.
I have to force the catheter many times becase the sphincter is so tight and this causes, pain, bleeding infection, etc.
As to the seizures, yes I have aura and "altering" of consciouness, but am aware of people around me speaking etc. but sometimes cannot respond at all.
I used to just go limp (starting in 1993), head would drop to left side and I couldn't respond with speech. I would sometimes drool and feel drugged and exhusted.
The symptoms have changed so dramatically over the years It would take to much time of your space and time to explain except to say that I refer to them as violent(intense). I know in advance they are going to happen and I know as they are happening.
I wish I could afford to come to the clinic but my hmo blue insurance does not cover it. I have no other funds as I cannot currently work.
I thank you for your prompt response and insightful questioning.
ps- i have been tested for tethered cord and spinal stenosis with neg. findings.
Thank you again, and if you have anything furhter to add please feel free.
I've been on Topamax & Tegretol combined since last March. I've had the same type of seizures you do for 18 years -- though I prefer to just call them "spacing-out". I wish I could say the Topamax gave me really good results. About the only thing it's really done for me has helped me to lose weight. That much is good! I've lost over 40 pounds! (I knew about the weight loss effects beforehand -- so no big deal). Anyway, I can be fine for a month and then have 2 or 3 space-outs in a week. So, I can't say Topamax is perfect. My life is not back on track. I tend to feel tired about mid-day (yes, even at work!). It's difficult to fight-off! The other thing is that I have some intermittent problems with spacing-out more at the time of my period (which is what I had read about). Also, my period had begun changing as well. It's still regular, but it starts, tapers off for a few days and then kicks in normally a few days later. So, I don't know if you'd want to call that a "longer" period or what. And, one last & wonderful thing, I found that constipation can be a problem if you're not careful about what you eat. So, just watch your diet! Those are just a few things to keep in mind.
The company that makes Topamax is Ortho-McNeil Pharmaceutical, Inc. Here's the link to their Topamax page: http://www.ortho-mcneil.com/topamax/index.htm Hopefully, you'll be able to get all the info you'll need. Otherwise, I found a bit of info on Yahoo! Just type in Topamax (or Topiramate) on Yahoo's search engine & you should come up with something. Also, I get info from my pharmacy every time I pick up my prescription. Maybe your pharmacy can give you a print-out as well!
One more thing: I don't know how much longer I'll be on Topamax. I'll be going to University of Michigan's Neurology Clinic at the end of this month to see a new doctor to (hopefully) resolve my problems. We'll see what happens then.
Please feel free to contact me at ***@**** We can talk more about this if you'd like.