Tattoo, You seem to know SO much about epilepsy.... I am going to the epoloptologist on the 19th..... I want to make sure that I get everything possible out of this visit. What should I all ask him? What should I bring with me...
Background for me:
I'm 25 started having seizures 3 years ago, 3 weeks after having my daughter. Every seizure has been the grandmal seizure. They have all been in my sleep. Mine are differant because although they are grandmals, I am conscience. I wake up when this strange feeling in my eyes...... like i am fighting to keep them from rolling back in my head. I can see whats around me for a few seconds in the seizure. I can even talk normally a sentence or two. Enough to wake up my husband. I then start getting this taste in my mouth like dirty coins...I then start to shake all over ......and i get this feeling like electric current running through my body. I can hear my husband talking to me while I am shaking. I am very aware of what is going on until I have bitten my tounge then I pass out. The last few seizures i have started to bring my hands up to my mouth and try to bite them ..... Once I touch my mouth with my hands .. i know i am going to bite them I can actually fight my hand back out. I have truly baffled my doctor. Thats why he reffered me off.
I have also been able to stop the seizure.... once my eyes start rolling back in my head if you can get my attention, be very loud and get me to focus on you I can stop it. Not often but some times.
Sorry to make this so long I just want to be completely prepared for this visit. I have been on Topamax (which worked for 18 months no seizures .. then all of a sudden I couldn't remember anything anymore, the seizures started again, i was always shaking. So they switched me to Depakote which REALLY packed the weight on me didn't stop the seizures and made me lose my hair by handfuls. Now I am on Keppra 2000mgs/day it also hasn't controlled the seizures and I have developed insomnia.
Hello. I will post somethings now and hopefully can add to it before your appt if I think of anything else. Is this your first visit to an Epileptologist? I wasn't sure, and in case it is, the first visit with this doc will be more comprehensive or should be. Regarding what to take with you, DO take your seizure calander. I always wrote down everytime I had any incident that was seizure related, included what exactly happened, what was going on that the time, what occurred earlier that could have attributed to the triggering of seizure activity (diet, lack of sleep, added stress, time of the month etc. I was very specific when I wrote it all down especially since you can begin to notice pattern that will help you realize potential triggering factors. Also, the meds with their negative effect on memory caused me to easily forgewt important facts I wanted to tell the doc. I still find it helpful to have my questions written down with me. I never took my meds with me, but I think some people have. If your dosage or the med has changed since you saw this doc last, having the bottles with you may be a good idea just in case the conversation when meds were changed never made it to the chart. Also, that would be one less think to have to remember to bring up. You'd have the bottles with all info on them. I am not sure of your seizure type and thatis definitely something to try and get from your doc, the correct diagnosis. I say that because a person is not usually conscious during a tonic clonic seizure. They especially do not talk coherently if at all. However, if the seizures are really originating from the Temporal Lobe and are starting as Partial seizures, what you describe could occur. The Tonic Clonic (grandmal) activity could be Secondarily Generalized, even though the site of the focus is Temporal which produces Partial siezures. Simple Partials do not affect consciousness and I can see your being able to do some of the things you describe. YOu probably would even remember that, but if the seizure is Complex Partial or Tonic Clonic, then there should be no memory of the event nor any conscious control over your actions. I have had seizures that tatally skip the Simple phase, starting at the Complex Partial stage and then becoming Secondariy generalized. I also have started with the Secondarily Genera;ized activity although not a full body Tonic Clonic. In other words what exactly happens during your seizures is important info for the doc, and seizures can and do vary from seizure to seizure. All of these details are important for the doc. Although I have never experienced it, I have heard of that old coin taste you refer to. I have read others say the same thing, but I cannot remember if it is a side effect or if it is associated with the seizures. If it only occurs during a seizure that also is important for the doc. Make sure you discuss thoroughly how your meds are 1-Working or not, and 2- How they are affecting your quality of life. If there are any tests that you have had and have nopt had the chance to discuss with him, Now is the time. Make sure he explains it all so that you do not leave there with questions about what he said. You are the one walkng out the door with the epilepsy and the effects, so you are the one who needs to be very knowledgable about akll the details. It is a good idea to take someone with you who has witnessed your seizures so they can describe what they saw. That is very helpful. They also can help you remember things in case you forget something you wanted to ask. I think it is a good idea to take a pad a pen with you so that you can write down what the Epi tells you as he explains all of the details re your blood levels, other test results, his thoughts about seizure types etc etc. Write the highlights down so that you have it with you when you get home. It helps to have it on paper, and also helps in that you do not have to worry about possibly getting home and forgetting something. If there are records from your last doc that have not been sent yet, have them sent to this doc in time for hime to be able to go over them. You want to leave there with an accurate diagnosis and a workable Plan of Care. Ask him, What Plan of Care do you recommend for me? If this includes only meds, ask him: If the meds do not STOP my seizures, at what point will we discuss other options. If you have not had a recent EEG with this doc, you will probably need one since your meds are not Stopping the sz and especially since what you describe is unusual. You want to know where the seizures are arising from. You may want to mention the VNS and ask him his opinion, but he needs a recent EEG with visible spikes probably to be able to answer fully re other options. You could mention the VEEG and ask if that is part of his Plan of Care. If I think of anything else, I will post. Break a leg. Tattoo