Newly diagnosed and worried...

[CindyD]

Hi all...

I've been reading many of your posts for the past few days and finally got the courage to join you. My name is Cindy. I'm 48, married and just recently had my brain MRI as part of my neurologist testing for partial seizures.

I've had Rheumatoid Arthritis and Fibromyalgia for over 12 years now and have been trying to get my disability for the past 3 years with no success yet. I had also been going to my neurologist for nerve damage caused by the RA. I won't bore you with those details because I learned to cope with those diseases years ago.

However, about two months ago, my husband mentioned to me that I had "zoned out" again and described what I was doing for those couple of minutes. I had no memory of the whole incident. He was pretty insensitive about the whole matter and said I was drugged out on my meds. I knew this wasn't true because I only take my pain meds when I absolutely have to because I know RA has no cure and I plan to be around for a while. I hadn't taken any type of narcotics that week at all.

There were other incidents as well. I already had a regular appt with my neurologist the end of Oct and that morning I woke up remembering with vivid detail the beginning of a dream that I had turned the lights out and was walking toward the bed (my husband was out of town that night) and I remember thinking that I'm falling and I can't do anything about it. I took my shower and as I was drying off, I noticed that I had a huge scrape on the back of my arm. That's when I realized that it wasn't a dream. I must have fallen, but I don't remember landing and I definitely don't know how I ended up in the bed.

I knew enough to tell my neurologist about these incidents and immediately he told me I was having partial seizures and ordered the MRI. He put me on a gradually increasing dose of Zonagran 100mg increasing 100mg per wk to 300mg. I go back to the neurologist on Dec 1 for my MRI results and follow up, but I have so many questions and concerns.

Thanks to all of you I have learned that I have been having auras for a couple of years or more but I had no idea what they were. I also have been having trouble with memory loss and severe muscle pain that was also unexplainable until I found your site.

Even with the Zonagran, I think I am still having partial seizures, but not as consuming as before. My mind seems clearer than it has in years and I'm happy for that, but could someone tell me if I'm just nervous and looking for something or if I really may be having "lighter" versions of partials?

This is what I remember and it happens quite often on a daily basis: I usually smell something like cigarette smoke and no one smokes at our home or in our area (we live in the country so it wouldn't come from a neighbor either), I start getting a headache in my right temple area and it kinda "grows" to move down my face and neck, my right ear and sometimes both start ringing or sometimes sound like someone put their hands over my ears, my stomach gets nauseous, my head wants to look to the right, if it keeps going sometimes I see something like multi-colored sparkles and things start to stretch out of shape a bit. That's about all I can remember, but my husband says that I've just stood in place for a minute or two and I remember hearing him ask if I was OK and I swear I said I was fine. He said I just mumbled.

Should I call my neurologist before my appt on Dec 1 to report these or just wait?

Also, I spoke to my dad yesterday to tell him what was going on and for the first time in all my 48 years, I found out that my grandfather AND my father both had had seizures. My grandfather had grand mals, esp with alcohol, and my father had partials. Most of my grandfathers first cousins also had some form of seizures, too. Does anyone know if these are inherited? Shoud I have my kids checked out?

Sorry for running on, but I can't help but be worried. Thank you all again for such an informative and friendly forum.

Cindy

[brain]

Cindy!

Welcome to CWE! First of all, you're just starting
the anti-epileptic drug, Zonegran, so
you must give it some time for the titration of the
medication to work - it's a slow process, and it
cannot be done quickly and it takes time. You will
experience seizures / auras during any medication
titration / introduction of any anti-epileptic drug.
They call this phase "honeymoon period".

Your body has to become adapted or rather, be
adjusted to the medication, which cannot be done
"overnight". I am also on Zonegran - 400 mg daily,
along with Clonazepam (generic for Klonopin) at
1.5 mg daily, and Folic Acid (generic for Folate) at
2 mg in AM - and now being on a honeymoon
phase myself with Lamictal titration.

I have been on many anti-epileptic drugs titration
throughout the decades so it takes patience,
however I encourage you to stop in and visit:
EPILEPSY 101
to get you started off the bat, and make
yourself a home here and feel free to browse around
and ask questions if needed.

I do have a post there in regards to anti-epileptic drugs
on the Epilepsy 101, so heading there will
be an excellent starters!

Welcome aboard!

[brain]

Also, I spoke to my dad yesterday to tell him what was going on and for the first time in all my 48 years, I found out that my grandfather AND my father both had had seizures. My grandfather had grand mals, esp with alcohol, and my father had partials. Most of my grandfathers first cousins also had some form of seizures, too. Does anyone know if these are inherited? Shoud I have my kids checked out?


Cindy

When you go into your next appointment,
I would inform your Doctor of this new information,
for this will be extremely helpful.

AND YES - Epilepsy can be inherited, via genetic, and
I would discuss with your Doctor pertaining your children
as well; they should be checked out for precautionary
measures.

[brain]

Here's some information from the Epilepsy
Foundation:

Genetics and Epilepsy

Genetics and Epilepsy

What is genetics?

Genetics is the study of genes, which are the basic units of heredity. Human beings have many thousands of genes. Each of these genes influences certain traits such as hair color, eye color, blood type, and many other characteristics. People are different with regard to these traits because their genes are different. Children look similar to one or both parents, for example, or have traits similar to their grandparents and other relatives, because of certain genes which have been passed or inherited from one generation to the next.
I thought we inherited different traits because of our chromosomes. What is the difference between genes and chromosomes?

An easy way of thinking about a chromosome is as a "package" filled with many genes.

The human body is made up of millions of cells. There are many different types of cells such as brain cells, muscle cells, and skin cells. Most cells in the body contain chromosomes. Each of these cells holds 23 pairs of chromosomes (46 total). One member of each pair is inherited from the mother and the other from the father. Genes are located on chromosomes and, thus, are passed from both parents to the child.

Genes, in turn, are made up of a substance called DNA (deoxyribonucleic acid). Genes give the cell instructions to make proteins, which are necessary for the body to do all the things that it does.
That sounds so complicated. What if something goes wrong?

It is complicated. Genes can be altered in many ways. Changes in the DNA that cause a protein to not work normally or stop working altogether are called "mutations." Environmental factors can also affect the way cells work.

Some mutations may result in disease and some of these conditions can be passed on to future generations.

Is epilepsy inherited?

Some types of epilepsy are. Epilepsy is not a single disorder, but a collection of many disorders that all have in common the tendency to cause a person to have seizures. When individual characteristics are caused by single genes, they are called "simple" genetic traits. Only a few rare types of epilepsy are caused by alterations in single genes. Most seem to be caused by a complex interaction among multiple genes and environmental influences.

I have epilepsy. Is my child likely to have seizures, too?

Certain types of epilepsy do seem to run in families. Some studies have shown that the risk of epilepsy in brothers, sisters and children of people with seizure disorders ranges from 4-8% (that is, between about 1 in 25 and about 1 in 12). The risk in the general population is about 1-2% (between 1 in 100 and 1 in 50). However, it's important to remember that although the risk is higher than in the general population, most people with epilepsy do not have any relatives with seizures, and the great majority of parents with epilepsy do not have children with epilepsy.

Which types of epilepsy are most likely to be inherited?

People who have a generalized epilepsy (one where the EEG pattern shows both sides of the brain involved at the beginning of a seizure) seem somewhat more likely to have other family members with seizures than those with a localization-related epilepsy (also called partial or focal, where the EEG pattern shows seizures beginning in a single area of the brain). Parents with a history of generalized absence (childhood petit mal) seizures are more likely to have children with the same condition than those with other generalized seizures or focal seizures.
What are some of the other factors that seem to be involved in inheritance?

1) Age when epilepsy begins -- Children of people whose seizures started early in life (for example, before 20 years of age) have a greater risk of developing epilepsy than children of people whose seizures started later in life.

2) Mothers and fathers with epilepsy -- Studies have shown that the risk of epilepsy is about twice as high in children of women with epilepsy than in children of men with epilepsy. Research has shown that this is not related to pregnancy or birth complications, maternal seizures during pregnancy or maternal antiepileptic drugs during pregnancy. More research is needed to explain this difference.

3) Cause of epilepsy -- The risk for developing epilepsy does not seem to be increased, compared with the general population, in relatives of people who have epilepsy caused by serious brain injury that occurs after birth due to conditions such as strokes, brain tumors, severe head trauma or brain infections.

Can epilepsy skip a generation?

Yes, it can. As discussed earlier, most types of epilepsy are caused by multiple genes and environmental influences. Not everyone who carries genes that make him or her more likely to develop epilepsy will, in fact, do so. Therefore, even if the genes are passed on, not every generation in a family will have seizures.
How can I find out what the risk is for my baby to inherit my type of epilepsy?

Ask your physician to refer you for genetic counseling. Specially trained physicians or nurses, genetic counselors, and other health care professionals can help you study your medical history, find out facts about your family history and, if possible, calculate the risk for you and your baby. They may recommend certain laboratory tests to get more information.

It's important to remember that although there is a lot of evidence that genes play an important role in causing epilepsy, exactly which genes are involved has not been identified for most people who have seizures. Studying the families of people who have epilepsy will help increase our knowledge and perhaps, in the future, will lead to new treatments for epilepsy or even measures to prevent epilepsy.

If more than one member of your family has a history of epilepsy or seizures, please consider participating in the Foundation's Gene Discovery Project. Completion of a confidential online questionnaire by you or a family member will allow scientists to determine whether the pattern of epilepsy found in your family could be valuable for further study. Your participation may help lead to exciting new discoveries about genetics and epilepsy.

[CindyD]

Thanks for the encouragement. I was on Klonopin for years for restless leg syndrome, maybe that was also helping a bit with the partial seizures I didn't know I was having. I tapered off it about the same time that I started having the other problems. Something to think about. Do the things I described sound like I'm still having partial seizure activity, just lighter? Have you heard anything about heredity and epilepsy?

You also mentioned Folic Acid. I've been required to take folic acid for years also along with extra Calcium+D+K and B complex because of my Methotrexate, and Embrel injections for my Rheumatoid arthritis. I guess I'll just add another drug to my list, hum.


Thank you again,
Cindy

[Bernard]

Hi Cindy, welcome to the forum.

I've had Rheumatoid Arthritis ... for over 12 years now and have been trying to get my disability for the past 3 years with no success yet. I had also been going to my neurologist for nerve damage caused by the RA.

I'm sure Birdbomb can commiserate with you on that.

... My mind seems clearer than it has in years and I'm happy for that, but could someone tell me if I'm just nervous and looking for something or if I really may be having "lighter" versions of partials?

This is what I remember and it happens quite often on a daily basis: I usually smell something like cigarette smoke and no one smokes at our home or in our area (we live in the country so it wouldn't come from a neighbor either), I start getting a headache in my right temple area and it kinda "grows" to move down my face and neck, my right ear and sometimes both start ringing or sometimes sound like someone put their hands over my ears, my stomach gets nauseous, my head wants to look to the right, if it keeps going sometimes I see something like multi-colored sparkles and things start to stretch out of shape a bit. That's about all I can remember, but my husband says that I've just stood in place for a minute or two and I remember hearing him ask if I was OK and I swear I said I was fine. He said I just mumbled.

Olfactory hallucinations (smelling something burning) is a common aura (simple partial seizure). If your head is turning without conscious control and you lose consciousness afterwards, it sounds to me like your simple partials are spreading to complex partials.

Should I call my neurologist before my appt on Dec 1 to report these or just wait?

That's really up to you (whether you can get by with the status quo or not until then).

Does anyone know if these are inherited? Shoud I have my kids checked out?

There is a history of seizure disorders in my wife's family tree on her mother's side. So far our two children have not exhibited any seizure activity, but we know that is always a possibility (especially when they hit puberty).

Our oldest has had a QEEG and some EEG neurofeedback sessions and I think his brain function is pretty well normal (for now at least). We haven't had any testing done for our youngest (now 5 years old).

I'm not 100% sold on the idea that one is damned by their genetic code. I think environmental factors (especially diet which is also generally "inherited" or learned) play a huge role (see Healthy lifestyle triggers genetic changes).

More here: epilepsy and genetics

[CindyD]

Thanks Bernard, for the info and the support. My 26 year old daughter was an identical twin. We lost her sister at 17 days old from complications at birth, but when Niki was about 6 mos old, she started holding her breath when she cried and then she would go unconcious, turn blue, and her fingers and legs would draw. She did this until she was about 2. Her ped made us wait until she was abt 14 mos old before he put her in the hosp for a wk and ran EEG etc. and at the end of the week he released her with dx of "bad temper". He told us that she had learned to manipulate us because we were already jumpy from losing her sister and that we musn't let her know that it upset us when she did this. He told us that once we knew that she was okay and just abt to wake up we were to go out of the room and she would stop doing this in a few weeks. Saying it now, it sounds barbarric, but she did stop. Now I'm wondering if she might have been having a sort of seizure that wasn't detected. When I described what was happening to me now, she said she has some of the same episodes when she's stressed (she's an elementary school teacher going back for her masters at night). I have convinced her to at least talk to her primary about the possibility.

Thanks again and I look forward to participating in the forum.

Cindy

[Kansas Educator]

Cindy,

I am 53 and was diagnosed about 5 weeks ago with partial seizures. Mine sound a lot like yours except that mine start in my left temple area. I also have a lot of dizzy spells. I know what you mean about feeling clearer headed because I feel the same way since starting Depakote which I am doing well on. As for whether you should call the neurologist, i think that's up to you. At the very least, I would write it all down and take it with me to the appointment. Have you had an eeg yet? Mine was abnormal and my mri showed some scar tissue -- probably from childhood if not birth.

I'm glad you've joined us -- keep in touch and hang in there! Better times are ahead.

[Kansas Educator]

Forgot to mention in the previous post that the neurologist did ask me many questions related to a family history of seizures, which I do have as well. He said there is a strong hereditary link.

[CindyD]

I had my brain MRI last week, but don't know the results yet. I've had several in the past because of chronic headaches and other neurological problems that, since the MRIs had all been clear, they had assumed must have been caused/related to my Rheumatoid Arthritis. I haven't had an EEG yet but wouldn't be surprised if he decides to. Although, he might not since I've been seeing him for about five years and since no one ever told me about what had been happening to me during my "zoning out" for lack of a better term, I wasn't able to relate this to him. Once my husband finally told me what he had observed, it was a relief in one way to know that I wasn't losing it for real. When I related this to my neurologist, he immediately put me on the anti-seizure meds, told me I was having partial seizures and ordered the MRI to make sure that it wasn't from something else (tumor, etc.).

After being on the new med for abt 3 weeks, I've finally remembered some of the auras and haven't (that I remember) gone completely out and hurt myself lately.

I'm so glad I found the forum and really appreciate the help and support and info that has already been extended in such a short time. I look forward to getting to know you even better as time goes on.

Thanks for your reply and your support.

Cindy

[hawke86]

I hope you get good results from your MRI.

[Kansas Educator]

Keep us updated Cindy!

[skillefer]

Hi Cindy! Welcome to CWE. Like Brain said, it might take your meds a while to truly work. So I'd wait a bit. Just don't do anything dangerous like drive or take a bath by yourself. I hope the MRI went well. Oh! And make sure you tell the doc how many auras or partials your having now that you've been on the drug for a while. That way he or she knows to run blood work and adjust levels if need be.