New to this, advice?

[jragonfly]

Hi I just wanted to introduce myself. I am new to both this forum and to epilepsy. I have not seen a neurologist yet but I am 99.99% sure I have photosensitive reflex epilepsy, simple partial seizures only. I used to think I had migraine auras and I've always been photosensitive to a degree, but I've only recently started having seizures this year and finally made the connection.

I have an appointment to see a neurologist on Friday, but I don't want to go because I don't want to risk losing my license (I live in NJ). I don't lose consciousness or memory and I don't think my seizures inhibit my ability to drive at all (I've had many while driving). On the one hand they are motor seizures, but on the other they are not random and only occur after a light trigger, and are entirely predictable at this point. I'm worried that a doctor will report it and they will take my license away anyway.

Thing is, I need a driver's license to live, just to get around places...I live in a rural area with little to no sidewalks or public transportation, and not much around. I also will lose my job without a DL, it is required by my organization that I have one. I don't know of any other job I could get where I didn't have to drive. I don't make much money and I am single. I am considering cancelling the appointment now, and maybe waiting and going to another state.

Anyone have any thoughts?

 

[Nakamova]

Hi jragonfly, welcome to CWE!

I definitely understand your concern about driving restrictions. In New Jersey, physicians are "required by law to notify the motor vehicle commission if a patient suffers from a recurrent seizure, recurrent periods of unconsciousness or for impairment or loss of motor coordination due to conditions such as, but not limited to, epilepsy." You need to weigh the risk of losing your license against the risk of leaving your seizures untreated. I would be very concerned if your seizures are progressing in frequency, duration, and/or scope. If that's the case, it makes sense to bite the bullet and meet with your neurologist in order to get treatment. It's also possible the doctor may have some wiggle room if you don't lose consciousness or control during your seizures (or if you describe your simple partials as intense migraine auras).

In Massachusetts (where I am), the doctors aren't required to report a seizure to the DMV, and I have driven before being the mandated "6-months-seizure-free." So it would be hypocritical of me to insist that you get off the road. I do have a good sense of my abilities and vulnerabilities, and I felt very comfortable making the decision to get behind the wheel. Whatever you decide, make sure you've considered the worst-case scenario, and that you are prepared for the consequences of your decision either way.

Let us know what you decide, I know it may not be easy.

Best,
Nakamova

 

[KellyD]

I completely understand your hesitation to see a dr for fear of losing your license. When I was diagnosed I had a baby and couldn't drive and it was awful and I didn't need it to work. It concerns me though that you say you have had many while you were driving, not sure if you have thought of it but what happens if your seizure type changes and you do have one while driving that may impair your ability to drive? It is something you definitely need to weigh up. I agree with Nakamova that you need to fully think it through. Best of luck with everything.

 

[Chel]

I have an appointment to see a neurologist on Friday, but I don't want to go because I don't want to risk losing my license (I live in NJ). I don't lose consciousness or memory and I don't think my seizures inhibit my ability to drive at all (I've had many while driving).

Hi jragonfly, and welcome.

I'm not sure I have anything helpful to offer you, other than to say I'm in a very similar situation. Most of my seizures are sps (daytime), I'm highly photosensitive, and I have more severe nocturnal seizures.

I do, however, suffer complex partial seizures (very rarely) and have days when I'm not "with it" enough to be safe behind the wheel.

I also live in a rural area, with no public transport, live 40km from both my workplace and the nearest shops (in opposite directions), and have very little support locally. So I completely understand your dilemma.

It's possible if your condition progresses you won't be able to go without medication, so the time to start making contingency plans is now. If relocating work and life is an option - somewhere there's public transport, more work options, more health and personal support, more epilepsy centres - then now might be a good time to start planning.

For me, my employer has enabled me to work from home (has provided a laptop computer and remote access) on days when I feel I shouldn't drive. Rather than face-to-face meetings, I can phone in. If I'm having a bad day and need an afternoon nap, I can make up the time later (we're saving my sick leave). These are to prevent me driving, losing consciousness and crashing - or just losing my license. Basically, keeping me in the workforce as long as possible.

Relocating isn't as easy as it sounds, and I'm more than aware of that. But you mentioned going to another state, so I wondered if it was a possibility for you.

As the saying goes, "I feel your pain".

 

[tase37]

Hope things work out for you ok Just wanted to say hi!

 

[jragonfly]

Thanks everyone!

After much careful deliberation, I did cancel the appointment with the neurologist today. It was a totally hard decision, but I think it was the best one ATM.

I should probably clarify what I meant by having many seizures while driving. I often drive back roads through the woods. This time of the year, while the sun is out longer and brighter and yet the trees are still bare of leaves, it can create shadows on the road and if the trees are lined up just right and I'm going fast enough, the flicker will give me small seizures. They are so mild that they would go unnoticed by anyone, and all flickering "normal" light affects me in that way. (Normal meaning non fluorescent, it's fluorescent lights that give me the strong seizures.) Pretty soon the leaves will come out and I think this effect will subside for awhile.

My seizures have actually decreased in frequency this past month because I have been taking special precaution to avoid any triggers. I have heard that seizures sometimes progress, and that simple partial seizures can lead to complex partial seizures...does anyone know the probability or frequency of that chance?

I decided I may see a neurologist if/when I move out of state. I moved back in with my parents two years ago and they are trying to retire somewhere warmer. I will move with them when that happens, most likely to Florida. Hopefully wherever I move to I will be less isolated and have more commuting options in general.

In addition to that, my father has a former colleague who happens to be a neurologist who specializes in seizures. He said he would invite him over so that I could talk to him, "off the record" and get his advice.

Working from home right now is not an option for me due to the nature of my job. Maybe someday in the future I will have that luxury.

 

[petrie]

hi,im a crash rescue firefighter,or was i suppose,i was having partial siezures and had a bad one when driving at high speed,i put off going to the dr because of the consiquences and now find myself with no job in twelve weeks time and labled disabled with little or no chance of getting another job.If i were you i would research every avenue before seeing a neurologist,because they are quite happy to sit there and say you have epilepsy without giving a damb what happens toy you once you depart their office,believe me i know.

 

[Nakamova]

jragonfly --

There are special sunglasses you can get that might help with the low-level flickering and the fluorescents too. You can read about them here: http://irlen.com/index.php

 

[jragonfly]

Petrie, I hear ya. I don't know if it's the same everywhere but doctors, and especially specialists, run their practices like factories where people come in for 20 minutes, they give you a diagnosis and a prescription, and you pay a bill, and that's it.

I'm interested in doing testing just to see what it would show, and I would like to know the reason or a cause for my having seizures recently, with no prior history. I have a hunch it's due to brain damage from whiplash when I fell on some stairs a year ago. But other than that, there's not much a doctor can do for me because I'm not interested in taking meds for simple partial seizures. The ironic thing is that I work with disabled people, sometimes epileptics, and many are on anti-epileptic drugs. I see the side effects and I don't like it, don't want to go through that.

Nakamova I have heard of irlen glasses and I have considered trying them. I wonder if anyone on here has tried them and had any success? I have also heard of something called Zeiss Z1 glasses, some sort of blue polorized glasses that treat photosensitivity, but supposedly they are not available in the US?

 

[KimberlyD]

I understand your concern about losing your license I go through it every year. I only have seizures when I am asleep (grand mal) but I still have to go to my doctor every year before my birthday and have him fill out a form for the BMV to say I can drive. I have to tell him I haven't had a seizure in 3 months in order for him to fill it out (so yes I have lied a couple times). I have told him many times if I have a seizure when I am driving I would have crashed long before the seizure because I have to be asleep for about 5-6 hours before I have one (they usually come on at exactly 4 a.m.).
I know it can be a pain but you may want to research your state BMV laws on "medical restricted license" see if partial seizures are listed, they may not be. I would hate to see you go without getting meds to control them if possible.

 

[petrie]

jragonfly,im not sure if its the same in the u.s but over here i was only under investigation for epilepsy and the dr told me not to drive and inform our licience regulators of that fact,if i was caught driving after that i would be in the doo doo.but on the other hand i would urge you to be careful if driving as i had a blackout doing about 80mph and still cant understand how i never killed myself or someone else.

 

[jragonfly]

Yeah the laws are different for all the states in the US, as I recently found out.

I don't drive very far or very fast, being a rural area and all it's not too possible to go fast with all the curves. I seriously see other people driving recklessly and talking on cell phones while speeding as much more of a threat to road safety than I am. onder:

 

[Nakamova]

People with epilepsy don't have any more car accidents than the public at large, but the perception is that we are a menace on the road...

 

[KellyD]

I don't want to upset or scare anyone, I don't judge anyone for anything they do because I don't like to be judged and I believe until you have walked in someone's shoes (which is impossible) you have no right to have an opinion but I just want to say that my friend's husband was almost killed when the motorbike he was riding was hit by a driver having a seizure behind the wheel. In the same accident a 17 year old girl was killed and her sister seriously injured. So many people's lives were devastated by this accident, my friend and her husband have a young family and she nearly lost her husband and their baby nearly lost his dad before he even had the chance to get to know him. He will experience the physical pain from this accident every day for the rest of his life which is a small price to pay when he walked away with his life. There was security footage shown of the accident and it is really a miracle that he wasn't more seriously injured or worse. The 2 girls were very popular young girls with very bright futures ahead of them and their parents lost 1 child and almost lost another, a girl watched her sister die and so many kids lost a very good friend. This driver, who had no previous history of epilepsy, has now been jailed for dangerous driving causing death for something he had no idea could happen and had no control over and now has to live with the fact that he killed someone. His family lose him for the next 5 years while he is in prison and he will never be the same again. I don't want to tell anyone what to do but I think before anyone makes a decision as big as this one that could possibly endanger your life you should see all the facts and consider all the possible consequences no matter how unlikely they may seem. I know exactly how difficult it is to live without a licence and it was awful but now that I am on medication (for partial seizures) I have been seizure free for almost 3 years and was only without my licence for the first 3 months of my diagnosis. During that time I was a new mum trying to adjust to this new life, my baby was very difficult and I was stuck home alone every day for that 3 months absolutely losing my mind and I had nobody who could even remotely understand what I was going through because until I was diagnosed (age 27) there was no family history of epilepsy. Before my diagnosis I was having partial seizures without knowing that this is what they were and without medication or treatment they progressed to a grand mal, thankfully while I was asleep. Please don't take any offence to this, I'm just trying to offer a different perspective because unless you knew someone that this happened to it probably isn't something you would consider.

 

[KellyD]

I would also like to add that I debated with myself for quite sometime about even posting this for fear of upsetting someone because it could be confronting or upsetting but I just didn't feel right not offering this perspective.

 

[corsch]

I understand loosing your license, it sucks. I'm in a state that doesn't require it but my insurance won't insure me until i'm out of the 6 months. It sucks depending on people but after I wrecked my car while having a seizure I realized that it was for the best. Maybe you could talk to your neuro and ask (plead) with him to not report your since you don't lose consciousness.

Good luck. I hope it all works out!