Just Diagnosed at 69 and distressed

[crystalbay]

Four months ago I had my one & only grand mal seizure. Since then, I've had five highly irregular EEGs showing erratic activity in my left temporal lobe and been put on Keppra right away. Each subsequent EEG has shown no change or effect from the med. A year ago, I had the same aura as with the recent grand mal, but didn't go unconscious. Last summer, I had 3 occasions in which while on the phone, my speech was slow and a bit slurred. That's the sum total of everything leading to the diagnosis.

I've researched extensively and gotten 3 neurologist's opinions; had two 24-hour EEGs, a 12-hour, and two briefer ones. What's so upsetting to me is that although the EEGs have shown up to 40 seizures in just one day, I remain 100% asymptomatic. No mental, physical, or behavior (overt) signs of seizure whatsoever. How can this be? I've studied 45 types of seizures and they ALL come with identifiable symptoms, but in my case (called "subclinical"now), there truly are no signs other than what shows up on every EEG. Has anyone ever heard of such a thing???

The Keppra has sapped my energy and rendered me weepy and overly-sensitive, so I'm very slowly being transitioned to Lichtal (sp?). For a few weeks, I'll be on both until tapering off Keppra. Please advise about the one I'm going on??

Now then, the only thing I fear in all of this is having another overt seizure and having a 3-month driving ban imposed (in MN you're supposed to self-report to the DMV - which I did not do). The month or so that I was too scared of the law to drive was the single worst month in decades. I live alone in a rural area, have no neighbors or nearby friends. I felt like I was on house arrest and very helpless. I then made short, 3-minute trips to get food and meds. I'm not banned now, but live in great fear of another event resetting the 3-month ban.

Finally, I'll mention that 3 years ago, I had Stage 3 esophageal cancer. After chemo/radiation, and a massive surgery, I've beat the 85% recurrence rate odds (8 clean PET scans so far). I needed this epilepsy diagnosis like a hole in the head!! Two things distress me: possibly not driving in the future; and the med side-effects to treat a condition which is entirely "invisible".

I'd appreciate any and all kinds of feedback, advice, knowledge you have.

 

[crystalbay]

There's an error in my start-up post to all of you: after writing "Lichtal", I wrote in parenthesis a question about it's spelling. Somehow that turned into "simple partial" instead of the 2 letters S and P (to indicate a spelling error). As I wrote above, there are no symptoms in my case (even starring, breaks in conversation, etc).

 

[marty]

Gday
How rural is rural near a city or a small country town ? my suggestion may sound stupid but if you live just outside a small country town and you have a bit of land , get yourself a horse ! at least it would give you freedom if you do get a 3mth ban from driving , it hurts when you cant drive when you live in a rural area , i wish you all the best .

 

[Cint]

Four months ago I had my one & only grand mal seizure. Since then, I've had five highly irregular EEGs showing erratic activity in my left temporal lobe and been put on Keppra right away. Each subsequent EEG has shown no change or effect from the med. A year ago, I had the same aura as with the recent grand mal, but didn't go unconscious. Last summer, I had 3 occasions in which while on the phone, my speech was slow and a bit slurred. That's the sum total of everything leading to the diagnosis.

I've researched extensively and gotten 3 neurologist's opinions; had two 24-hour EEGs, a 12-hour, and two briefer ones. What's so upsetting to me is that although the EEGs have shown up to 40 seizures in just one day, I remain 100% asymptomatic. No mental, physical, or behavior (overt) signs of seizure whatsoever. How can this be? I've studied 45 types of seizures and they ALL come with identifiable symptoms, but in my case (called "subclinical"now), there truly are no signs other than what shows up on every EEG. Has anyone ever heard of such a thing???

That is what an EEG is for, to show brain waves and what is going on, even tho we may not actually experience a seizure while undergoing an EEG. A lot of folks have had many seizures, but nothing shows up on their EEG, so they have to have a VEEG.
From www.epilepsy.com:

What can the EEG show?
The EEG shows patterns of normal or abnormal brain electrical activity. Some abnormal patterns may occur with a number of different conditions, not just seizures. For example, certain types of waves may be seen after head trauma, stroke, brain tumor, or seizures. A common example of this type is called "slowing," in which the rhythm of the brain waves is slower than would be expected for the patient's age and level of alertness.

Certain other patterns indicate a tendency toward seizures. Your doctor may refer to these waves as "epileptiform abnormalities" or "epilepsy waves." These include spikes, sharp waves, and spike-and-wave discharges. Spikes and sharp waves in a local area of the brain, such as the left temporal lobe, indicate that partial seizures are beginning in that area. Primary generalized epilepsy, on the other hand, is suggested by spike-and-wave discharges that are widely spread over both hemispheres of the brain, especially if they begin in both hemispheres at the same time.

The Keppra has sapped my energy and rendered me weepy and overly-sensitive, so I'm very slowly being transitioned to Lichtal (sp?). For a few weeks, I'll be on both until tapering off Keppra. Please advise about the one I'm going on??

Keppra is known to cause depression, so it's good you're being taken off this drug. Is this other drug Lamictal?

Finally, I'll mention that 3 years ago, I had Stage 3 esophageal cancer. After chemo/radiation, and a massive surgery, I've beat the 85% recurrence rate odds (8 clean PET scans so far). I needed this epilepsy diagnosis like a hole in the head!! Two things distress me: possibly not driving in the future; and the med side-effects to treat a condition which is entirely "invisible".

I really am sorry to hear of your esophageal cancer but glad to hear you've beat the odds, so far. Make sure you communicate clearly with all docs about any and all side effects and symptoms that you experience that you might think are seizure related. Hang in there!

 

[crystalbay]

Thank you so much for responding! I'm being slowly put on Lamictal. What side-effects does this med have?? Have you ever heard of a seizure disorder with no manifestation at all?? So far, I've not been able to find even one other person diagnosed with epilepsy who has zero symptoms.

 

[Grace]

Your situation does sound unique. I am on Lamictal and unfortunately, it does have some side effects but they diminish somewhat over time. I found that I have to take mine at night or I can't sleep. Isn't that strange? Headaches are a big side effect for me. They were piercing at first but now have turned more migraine like. I never had headaches before. I also have vivid dreams now. Dizziness and fatigue are annoying but like I said, once your body gets use to the medicine it's not as bad. I've also had skin changes like eczema and itchy skin that I never had before either. In my experience, the Doctors minimize these side effects although if you look at the print out that comes with your prescription, you can see that the side effects are vast. I think they somewhat vary for each of us. Hold on and it will get better. Oh, and I didn't have any problems until I was 100ng and higher (taking 300mg now). All the best!

 

[Cint]

What side-effects does this med have??

The most serious side effect of Lamictal is the skin rash it causes in some. I once took Lamictal for seizures, but didn't experience the rash. It's also used as a mood stabilzer, so I didn't experience the depression while taking it. It didn't do a thing for my seizures, but that's just me.

Have you ever heard of a seizure disorder with no manifestation at all??

I read in your first post that your speech was effected a bit. These sound like simple partial seizures and this is probably what is showing up on the EEGs. That's probably what the dr. is seeing. Otherwise, they would not have prescribed a medication for you. My neuro told me last week that some of her patients don't realize they experienced a seizure (simple partial) because they can happen so quick. Literally a blink of an eye. That is why E is so hard to diagnose and deal with.

 

[crystalbay]

I've never had a headache in my life, Grace. I'm supposed to slowly go up to 300mg as well. I'm concerned about staying on the Keppra while also on Lamictal for about a month before tapering off of it. I'm surprised that a doc who knows of my past history of depression would even put me on Keppra. She did say that any kind of rash on Lamictal means that I can't handle it. I so want to "meet" another person who's entirely asymptomatic, but so far no one's come forward.

 

[crystalbay]

Four months on Keppra hasn't altered my erratic EEG results either. The slowed speech events all happened in just one week over a year ago - nothing like it since. As to having seizures I'm unaware of, I'm a therapist in private practice and sharp as a tack. I've also asked all my friends regularly if they ever notice even a nano-second of disconnect, losing track of conversations, or any other unusual behavior on my part. They report that I never skip a beat, but remain on red alert to give me feedback if there's anything "not like Nancy". Four months ago, on the very day of my first 24-hour EEG, I saw four clients, had several phone dialogues, and was 100% functional. That EEG showed 40 seizures throughout the 24 hours. I was incredulous and still remain entirely baffled as to how this can be going on with no disturbance or any signs outwardly!!

 

[Cint]

Many of the meds can/do cause migraines, as can seizures themselves. I never had a migraine, either, until I started experiencing seizures. And depression is also something that goes along with TLE. I've had MAJOR depressive issues along with MAJOR seizures, too. And currently I'm on 3000 mgs of Keppra along with some Topomax (for seizures + it's also used as a mood stabilizer) + an anti-depressant.

 

[crystalbay]

This is very troubling to hear, Cint. I dealt with major depression for over 20 years earlier in my life. Lots of good therapy and 20 years on Prozac. After turning 60, I finally cleared all of this and have been extremely happy, contented, and in charge since. Even the highly-lethal cancer DX didn't depress me three years ago, so it's awful to hear that a medication for an invisible condition which doesn't impair me may well bring on what I see as an induced depression. The 4 months on Keppra never went beyond 750mg since that attained the desired therapeutic level in my system. If I'd had numerous seizures, this would be far more acceptable - but it's only happened once.

 

[goodoldrebel]

In my late 50's and have had seizures just recently start and only when I sleep. I think that my self imposed no sodium, no fat suppossed healthy diet might have triggered these seizures as the body does need some sodium and fat. I suspect also the two prostate meds might have contributed.

 

[Grace]

Crystalbay-I know it is all very shocking, especially when you don't feel like you necessarily need it. When I first started Lamictal, I was terrified of the rash (which thankfully I never got). I kept telling my neurologist that I wanted the least amount of effective medication. He agreed but kept warning me that it's usually between 300-400mg for a therapeutic level. Now that I am up to 300, its not as scary as before. By the way. I have a master's degree in counseling too. Perhaps you are a Doctor? I love the profession. So I thought that the Lamictal would actually elevate my mood (looking on the bright side), but it actually gave me some anxiety. It's possible I had some before and this just made it more prominent. Who knows?

 

[crystalbay]

I so agree with you that simply getting this diagnosis is anxiety-provoking, especially when (as in my apparently unique case) there are no symptoms or dysfunction at all. As I've written, my ONLY concern isn't having another seizure; it's the possibility of another 3-month driving ban. Thank God I live in a state that doesn't impose 6 or 12 months!!!

 

[Grace]

I can absolutely relate. I'm in a 6 month state and it stinks. If I could have one wish right now it would be for an hour alone driving in my car singing loudly to my music!!

 

[crystalbay]

In MN, you're supposed to "self-report" to the DMV. No way would I do this! It'd be like calling the IRS and suggesting that they audit your tax return. I researched the penalty for not self-reporting - it was a 6-month driving ban. No jail, no community service, no fine, not even a misdemeanor. I thought it through - just how could I be "caught"? I imagined a speeding ticket, broken tail light, minor accident, etc. The cop would take my license to the squad car to see if there were any warrants, other offenses, etc. Not self-reporting, there'd be nothing on my record. The only possible way there would be a problem is if there was a major accident in which medical claims were filed. After I thought all this through, I decided to make short trips up the road for food, meds, and dancing (all within 4 minutes of my home). After sitting home for about a month, I drove again for the remaining 2 months of my "sentence". It also occurred to me that the one & only big seizure I'd had gave me several minutes warning before it hit. If this same aura occurs - no matter where I may be - I'll immediately tell someone and lay down (or pull off the road). I honestly don't see my medical history as something which would put me or others in danger.

 

[Grace]

I see your logic! I think I would have plenty of time to pull over as well. It's all so very irritating isn't it? It sounds like you have made some decisions that seem to be working well for you. I have stores within five miles of my house too. I've thought about it, but haven't been brave enough to venture out yet. I'm that person that the one time I cheated I would get into an accident.

 

[crystalbay]

Hi Grace - believe me, it took a lot of courage to drive that first time. After 3 weeks of growing more & more depressed, I screwed up the guts to go buy some food. I turned the key in the ignition and the damn thing wouldn't start! I, of course, had an immediate notion that this was the Universe giving me a bad omen, telling me that I shouldn't be driving. Still, I called a gas station to jump the battery, then nervously drove to the local grocery store. All the way home, a police car followed me home. I was a nervous wreck that first time, but each short drive eased my anxiety and after several trips, I got over it. The whole time I drove, however, I was keenly aware that I was "breaking the law". Perhaps my story will give you the courage to make short drives, perhaps it won't, but I was immediately relieved from feeling trapped at home.
Please remember that I'd carefully thought this through and determined that the chance of seizure was non-existent and of getting caught darn near zero.

 

[Grace]

I feel the same about the chance of getting caught...just don't have the courage yet. Wow, that first trip for you was wild to say the least! I am hopeful I will get my wheels back in October. It's not that far away. I am very lucky to have a husband who can flex his schedule enough to get me out some. Still, one trip out by myself would be exhilarating! I feel terrible for some people in this forum who rarely get out of the house. It is depressing and I think overall detrimental to ones health to always be in the same environment all of the time. I wish I could transport these friend myself.

 

[crystalbay]

I may have already mentioned this in a previous post, but not only do I live alone in a rural area, there are no buses and neighbors willing to help. The depression brought on by such isolation was far more concerning than the small risk of driving, Grace. In the state you live in, does the doctor have to report you?? If not, how would the DMV even know about your condition?? What's your history with actual seizures??