I was diagnosed with epilepsy, but for as long as I can remember I have had extreme tachycardia, huge pupils, constant tremors, etc.
could there be more to this than just epilepsy?

Hi Amy,
The large pupils and tremors can be all part of the epilepsy and often time tachycardia or other heart problems can lead to seizures for people do to the lack of blood flow or a rapid heartbeat. Sometimes after a person has had a sz. their pupils are dialated and often I have had tremors do to the AED (seizure med) I've been taking.
You should see an Epileptologist if you haven't seen one yet and find out if there's a contection between your heart and your sz. Also try taking vitamin B12 1000 mcg. for adults once a day to see if this will help you because vitamin B12 helps calm the nerves and it has reduced my sz. greatly. I wish you the best of luck and May God Bless You!

Sue

I have never heard of an epileptologist - what do different than a neorologist?
I suppose I'm worried about it being an underlying cardiac problem is bc the tachycardia, etc all started before I ever had a seizure and before I was on meds. I have only had about six seizures in my life, and all this new, well respected doctor, had to say on my first visit was you have had enough seizures to prove it is epilepsy. He did no tests, no response to my questions about any questions I had about any possible cardiac problems, and I don't even want to see another doctor because they all do stuff like that or say they can find nothing wrong. I have severe tachycardia almost daily, so i know it's not a per or post ictal thing.
And within the past three months I have had two episodes lasting one or maybe more week of blacking out,mnot remembering anything, finally becoming lucid and seeing that all my furniture was turned over or broken. This past tme I broke every lampshade in my bedroom. Somehow shattered. Plastic trash can, broke a wooden chair, and a huge blood stain on my mattress because for some reason all the sheets had been pulled off the bed. I have been COVERED in bruises on my face, arms, torso, and legs. All of this is So scary I have no idea what to do pe who to talk to.

Any thoughts?

Hi Amy,

I'm so sorry to hear that you have been having a hard time with the possible sz. The difference between an Epileptologist and a neurologist is that an Epileptologist specializes in epilepsy as well as other neurology disorders. Epileptologist can do simple tests like e.e.g.'s, MRI. CT scans PET and SPECT scans to find out what's causing the sz. and they will find the correct meds for your sz.
You should ask your family Dr. to refer you to see an Epileptologist which are usually at University or big hospitals. The Epileptologist will work with a neuropsychologist, as well as a neurosurgeon to help a person and control their sz. and if the person looks into brain surgery they work together as a group.
What I have been told to do is to get a calendar and write down what time I have a sz. with a description of the sz. by doing this the Dr. can often sz. a pattern in my sz. and he found that I have sz. early in the morning and on certain days of the month. This often happens with women do to hormones changing each month this type of sz. is known as a catemenial sz. also be sure to write down when you start and stop your monthly cycle. I've found that cell phones trigger sz. for me if I'm in a store with many people using cell phones it will cause a sz. do to the frequency the cell phone uses. Also stay away from anything with nutra sweet (aspartame) in it because nutra sweet has been proven to cause more electrical activity in a persons brain and it can trigger sz. for many people. I learned that after drinking diet soda.
If I may ask do you have your sz. when you go to bed or when you get up in the morning? If you do these are called myoclonic sz. If you happen to have a sz. and you see colors in your eyes, hear words said, or get a nervous feeling in your stomach this is an aura (simple partial sz.) that may lead into a complex partial or absence sz. but from what you have described I'm wondering if you may be having tonic clonic sz. also known as grand mal sz. this is when a person has convulsions and is out of it for a few minutes then they feel tired, have a headache, and want to sleep. You can get more info on different type of sz. if you check out Epilepsy Foundation.org or call them at 1-800-332-1000 they will send you info. in the mail or you can talk to someone who can explain in detail what may be going on. I wish you the best of luck and May God Bless You!

Sue

I really appreciate your concern and information about the other tests that could help to figure all of this out. The problem is that my seizures happen so randomly, I've probably had six-ish grand mal seizures in the past five-ish years (I have an awful memory), and there seems to be no common thread amongst them.
I really feel like I need an autonomic system and/or cardiology work up because I know change in blood flow, etc caused by heart problems can affect brain activity to screw ups. I know that I frequently, at least lately, i have had week or more longer spells in which I finally become lucid, but look in thr mirror and am covered in bruises, cuts, scrapes, blood covering the bed, not to mention how unsteady I am, falling over and pulling every bit of furniture in my bedroom over just trying to steady myself. ... I guess that might be another reason to look into other possible Neuro tests; I am just beyond tired of hearing that nothing is fixed or

Hi Amy,

I do agree with you that heart problems and lack of blood flow can trigger sz. Another thing that may be causing some of your sz. is a possible low pressure in the weather. Sometimes a day or two before bad weather hits a low pressure affects a persons hormones which in turn can trigger sz.

In regards to memory loss that could very well be do to the seizure meds you are taking. Many people I know of have complained about short term memory loss. Also if a person has a lot of sz. over the yrs. like I have had it can shrink the hippocampus of a persons brain causing memory loss. I had so many sz. over the yrs. that when I had brain surgery to reduce my sz. my neurosurgeon removed the right hippocampus of my brain because it had shrunk and become hard from yrs. of sz. (The hippocampus is for short term memory and learning.)
If I may ask do you ever notice that you have more sz. at certain times of the yr.? If you do these can be called "seasonal seizures" meaning that the serotonin outside can either increase or decrease a persons sz. I always have more sz. in the fall and winter because there's less serotonin compared to the spring and summer when there's more serotonin outside. Take note of this and see if it makes any difference for you. I wish you the best of luck and May God Bless You!

Sue