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

Porkette,

I was wondering what your neurologist was like and how you ended up seeing a Neurosurgeon. Usually you need a referral for that and I know mine would probably laugh at the idea. Also, I haven't had a ton of grand mal seizures over the years, probably less than ten in about seven years or so (i can't really remember), though a previous neurologist diagnosed me with partial sz when I was a good bit younger which I hear can lead into grand mal seizures. I was on lamictal for those and depression and this new neurologist said that it probably stopped me from having a lot more grand mal seizures, but just wasn't doing the job completely so he added something on.

What kind of tests did they do to decide to take out part of your hippocampus? I went thru pre nursing so I'm familiar with its functions.... That must have been a pretty big decision to make that decision and for your doctor to think it was the best way to go. How often we're you seizing? Did meds not help?

I've never really thought about the time of year I had sz. I just had one in April, one in December I think, another in february maybe, one hiking in the mountains, and I honestly cant remember the other times. I had a ton of partials when I was younger (young teens or a little younger I guess is when they started).... But no one could ever catch them on an EEG.

I'm scared all the time now bc I don't think it's simply epilepsy and that tacking on another pill will be the fix. And most everyone on this site probably knows insurance companies pretty much stay away from us; I'm a little lost.

Any more thoughts? Anyone???

Hi Amy,

I saw many different neuros. over the yrs. and found that they couldn't really help get my sz. under control so a friend told me about the brain surgery they started doing a few yrs. ago and that's when I decided to see an Epileptologist, neuropsychologist, and neurosurgeon at an Epilepsy Center to have surgery done. I would have at least 300 sz. or more a yr. and not a single drug was controlling my sz. I had my family Dr. refer me to see an Epileptologist instead of my neurologist and before I had brain surgery I had to have a FMRI, VEEG (video e.e.g. where they did the surgery and put the electrodes directly on my brain,) CT scan, PET and SPECT scan, stress test and the most fascinating test was the wada test. When they found out surgery was okay the removed 75% of my right temporal lobe and all of my right hippocampus. I had to stay awake for most of the surgery and I found it really neat since I enjoy the medical field. I also had to have an angiogram test done and a bleeding test done to make sure that my platlet level was okay. I knew that if I didn't have surgery done to reduce my sz. that they were only going to get worse and when they did surgery on me the found 3 different areas on my brain that were triggering sz. but the test only showed 1 and that's because the damage was to deep in my brain.
To find the right med for yourself tell the Neuro to do a DNA test on you by doing this test they can find what sz. med will work the best for you with the least side effects.
Don't let the Drs. keep adding on more pills because that is often what is triggering sz. for a person because drugs are interacting with each other. I found this out from my pharmacist.
If you have had or are having simple partial sz. they often lead into a different type of sz. I have this kind of sz. also and I get a nervous feeling in my stomach and see colors in my eyes, I have learned that the moment that starts to tighten up all the muscles in my body and make my hands into tight fists and this will stop the sz. Sorry for carrying on so long. Here's wishing you well and May God Bless You!

Sue

I tend to ramble a bit myself, and when it's in regards to something as intense as that, I don't mind. We're all here for advice and to find someone with a common ground that's pretty difficult to come across.
I had no idea such extensive surgeries were done like yours, but it sounds like your life was basically one seizure after the next... It doesn't seem like much of a life to live.

How much have your seizures reduced to? And what kind of side effects did taking out that much of your temporal lobe AND hippocampus have on you?

I think my main concern is that my seizures are nervous system (autonomic) and cardiac related. I shake like a leaf constantly, often have a resting heart rate of 170 or so, have dime sized pupil... To the point where everyone thinks I'm high on something, and severe insomnia.
I'm just not ok settling with the diagnosis of epilepsy. I had all these symptoms before I ever had seizures and before I was on any meds.

And I think what may be just as frustrating as the symptoms is that because of all of this I cannot get any decent health insurance.

What does everyone else do In regards to that. I lost my job after having a seizure driving and no insurance company will touch me.

Grr

Hi Amy,

Please don't consider this as rambling on we are all here to support and help each other. My surgery was nothing compared to a couple of my friends one who had the right hemisphere of his brain removed after 5 surgeries and another friend who has sz. because he had a brain tumor and will be going in for his 7th and maybe 8th brain surgery this August.
Before my surgery was done I would average 300 or more sz. a yr. there would be days when I had 4 or more sz. and I would average 20 or more sz. each month. After my surgery my sz. reduced down to the lowest which was 68 sz. in a yr. an the most I've had so far is 121 sz. in a yr. and that was do to stress because my parents got a divorce after almost 42 yrs. together. On average I have about 100 or more sz. a yr. but many of those sz. are aura sz. where I'm conscious the entire time I just get colors in my eyes and get a nervous feeling in my stomach and the most sz. I still have is absence sz. but they don't last as long as they used to and I don't feel tired nor do I have a headache after the sz. is over.
Some of the side effects after the surgery is not remembering a persons name sometimes but other than that I feel a lot better, my personality is a lot better I'm not so moody anymore, and I have noticed I can feel things that I never felt before the surgery was done.
In regards to not having health insurance you can call the Epilepsy Foundation of America at 1-800-332-1000 and they can help you out with insurance and other medical needs so you can get the treatment you want. Check into seeing an Epileptologist and if you are interested have the surgery done and this may help your heart also. I used to have a rapid heartbeat every now and then but since the surgery I'm a lot better. Here's wishing you the best of luck and May God Bless You!

Sue

I'm sorry if you have mentioned this b/c I mostly skimmed, but have you been checked for pheochromocytoma? I was worked up for that several times even though my symptoms were not so severe. Long story short, my neurologist thinks I am having seizures that cause elevated heart rate, elevated blood pressure, etc (autonomic seizures, I think). However, when I have a 'spell' my HR goes up to about 150, I can't imagine a resting heart rate of 170 and even further I can't imagine a doctor not doing anything about it I hit the 170's once and wanted to puke and die LOL Totally different than when I'm exercising and hit 170, hard to explain why I can handle it in once instance but not the other. Then I get the shakes really bad, it feels like I'm being injected with straight adrenaline.

I have never had a typical 'seizure' and I honestly think he's just guessing BUT my EEG had some abnormalities on it, just not certain they were full on 'seizure activity' vs abnormal spikes. That's not my forte and he didn't give a lot of specifics. I will say I haven't had a big bad spell since I've been on the (really low dose) med for seizures. I've had a few small ones, but nothing scary. It did take a few years of 'oh you're anxious/depressed/panic attacks/etc' before I found someone who really cared to try and figure it out.

BUT in your shoes, with the long-term, chronic nature of your heart rate, I would look into autonomic issues (if you are into googling w/o freaking, that is, I know it's hard to decipher medical issues w/o internalizing them and self-diagnosing)... neuroendocrine disorders/pheochromocytoma is what I'd look up if I were you.

Good luck, hope you find some relief