Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
So yesterday I went for my doctor's visit. Originally it was scheduled for the end of September but my job had been bothering me about working from home and not being able to drive so I was able to get it moved up. Well, the past couple months since my last visit I've been having these little spells where I blank out for a few seconds up to a few minutes. I didn't really know what was going on. The only seizures I've every had and am used to are the big grand mal (tonic clonic). So I just thought may be this was some side effect from my medicine or something since he had incresed my dose. Well yesterday when I went to the doctor he told me that I've been having complex partial seizures. Since I've been on a number of different medicines and have had numerouse EEG's (in the office, in the hospital when I was first diagnosed, at home) he said that it's time for me to come into the hospital for 3 to 7 days for a video EEG. He said that they would then try to stimulate a seizure to try to figure out where the seizures are coming from. Once they figure that out we could talk about other options (such as brain surgery, other medicines, VNS, or experimental drug study). I don't know why but I got really upset after the visit. I know that it's a good idea to have this test and hopefully they'll be able to figure out what is going on inside my head but I guess I just got upset because I thought I was doing better when in fact I've been having all these seizures and now I'm going to go into the hospital and let them try and make me have a seizure. ARGHHH!!!!! I'm really hating epilepsy right now and feel so alone. I keep crying and just want my Dad who has been dead for 11 years. Ugh. Like I said I know that this will most likely help but for whatever reason I'm just letting it get to me right now. I just have to be strong and not let this get me down. That's what I always tell myself. Easier said than done sometimes though.
Going into the hospital and being monitored is a great way to find out what's specifically wrong with you, and your doctor will know how to treat your seizures better.
I'm sure that you're probably having difficulties of some sort because of the seizures, and being tested and figuring out what's wrong means that you'll have a much better chance to get better; you should notice an improvement in your life, and it will get better.
I may go into the hospital and be constantly monitored, too. This is how I view it. The seizure medications I've been on had little effect, and being monitored in the hospital and then choosing an appropriate treatment is the best hope I have. This is the way that I'll most likely see improvement, and it makes me a little more hopeful.
Are you feeling uneasy about the possible invasive treatments? If you feel okay and you don't want to get these procedures done, it's your choice. You can try the treatments you prefer most and they might get the job done.
Also, it's not uncommon for doctors to push patients into getting unnecessary treatments, so they can profit off of. You can always get another opinion before making such important decisions.
I feel like there's much more I should be able to say, but I can't. I wish I could have said something more. My brain doesn't work because of the seizures, but I wanted to share my point of view regarding this situation. HUGS
Epilepsy is a strange illness and was once best described to me as being difficult to understand because we can't see it. Now there are a lot of great tests that help doctors "see it". Seeing it happen, often helps fix it. Lots of hugs and good wishes to you.....
I always have abnormal EEG's but nothing to get worked up about. I saw my doctor today and mentioned everything I have been feeling and this is the result:
I was sent for an incredible amount of blood work and had that done already. Next will be an MRI of my brain. I also need another EEG, an EMG and a TCD. The things he is ruling out are the following: a tumor, an intercranial tumor, ALS (my dad had this illness), PLS ( they thought my dad had this too), MS, Parkinson's Disease ( my brother had this and has passed 3 years ago), and other anomalies. It's also possible I will be switched off one of my anti seizure meds to a better one but that will throw my body into a tailspin. I'm incredibly upset, alone and can't imagine going through what my brother and/or dad did. It was one of the most horrible experiences I've ever had and I've worked hospice taking care of terminally ill babies and children. My tests start next week right after my disability hearing....great timing ya' think??
Thanks for the support!