horrible conversation w/ Neuro about driving-need

[MightyMouse]

I'm freaking out here... my neuro is considering not allowing me to drive any longer as I've had 3 syncopal episodes in 3 months time. I tried explaining that for me, it never happens when I'm sitting, only when standing and I get fair warning w/ nausea, sweats, shaking, etc. He agreed to let me continue if I agreed to see another EP cardiologist locally (literally across the hall from him). He just wasn't getting it that I never have experienced syncope while seated.

I don't know this cardio at all and am now worrying about what will happen next. Have any of you guys dealt with this? If you're still driving, how did you argue on your own behalf?

HELP!!!

Nina

[mom4cem]

Hi Nina,

Sorry I can't offer much help in this area. You've been to see a cardio before? Have you access to your records? I'd imagine this ep would want to run some of his own tests. Having my license pulled would be hard for me also. I do everything, and have to drive!... It seems like your pleas fell on deaf ears, once they think one way, it is hard to change their minds. Hopefully this ep will listen with open ears.

Maybe he will perform his own tilt test to see how you respond.

I know this was not much help,,but I really do support you and hope this all works out well for you!!

[morgan617]

Man so sorry Nina! I had to stop driving two years ago. My ENT and cardiologist both told me. It was very very difficult. But my reasons were not the same as yours. It seems if you have never fainted while sitting, and you have plenty of warning, (which I don't) it shouldn't be that big of a deal. I believe most of the people on this site still drive. He may just be covering his rear end. Now he can say he advised you, and it's off his shoulders, I don't know. I'm not sure what he thinks the cardiologist can contribute, but guess I would go if only to be compliant. Then they have dotted their i's and crossed their t's and then it's up to you. That's my gut feeling on this. My ENT said He couldn't force me to stop, but he wouldn't supprt me if I did and something happened. I had no problem with him feeling that way, but chose to stop for fear of killing someone, if hit by an attack. However, as I've said, I have no warning. Hang in there, and just agree to what he wants, then he'll leave you alone. I'm not sure a doctor can actually get your license revoked, but I'm not sure. morgan

[steph37822]

oops

[Ernie]

Hi Nina

I almost lost my driver's licence 5 times when going to the ER by ambulance. I convinced the doctors not to take my driver's licence away because I never fainted while sitting. The government is aware of my health issues and I have to have my doctor sign a document every year stating that I am still apt to drive.

Of course, I don't drive when I am not well enough. But I am glad to still be able to have this priviledge even if I don't drive often. Most of the time I don't take the highway anyway.

You should be allowed to keep your driver's licence.

Ernie

[MightyMouse]

Thanks everyone. I think the hardest part is that the EP is a complete unknown to me and I've had some cardios in the past that were just plain mean and had no interest in understanding or learning about my illness. My first one actually said something like "there's nothing wrong with you so go and have a nice life." GGRRRRRRRrrrrrRRR

Yes, my doctor can have my license withdrawn. He would simply need to report me to the state as unfit to drive. I was a bit startled today as this is the first time in my many years that driving has ever been brought up. As I've only had syncope when I'm on my feet, I just wansn't prepared for the panic it evoked as I digested what the doctor said to me.

I did forget to leave out the good news--my EEG and MRI's are all fine, misreading notwithstanding.

I have decided not to take Lupron during this upcoming cycle--I'll wait for next month. My neuro really was concerned given the big increase in problems I had with just a steroid injection. If I'm going to have a setback with my body, I don't want it to happen when I'm away from home, if I can help it.

Also, I'm not going to get as much of a rest this Summer as I'd planned. I mentioned in another post, I've registered for full time coursework in the 2nd session of the Summer, which means I'll be in class Monday through Thursday from July 5 to Aug 15, and then I have one week before my regular schooling starts up again. Someday, I hope to look back on all this and laugh

Nina

[Guest tearose]

Nina, I'm a bit tired so I may not express myself as clearly as I would like but I want to try because I am concerned for you. This news of yours is not good! Keep that thought of looking back on this time and laughing but let's think this through real seriously!

Once your record shows that you had to stop driving, it puts you in a bad place for the future. Both from a medical and liability point of view.

Since you are real clear that your bad symptoms never happen when sitting, now prepare to show the EP how you are able to manage. I'd strap on a heart rate monitor and share how the alarm beeps way before you get lightheaded and that you know how to manage yourself. You want to tell the EP and the Neuro that if you had any question about your own safety or of those others in your car or sharing the road, that you would not drive. Be ready to declare how you "know" you are safe. I think if you can prove you can manage yourself while sitting, you should be "cleared" for driving.

Good luck, tearose

[morgan617]

Nina, isn't it ironic that a terrible cardio treated you that way, and it was so awful, and nowyou have to hope this one will!!! Talk about the ironies of our lives morgan

[EarthMother]

My heart goes out to you Nina (only small pun intended)

I am so sorry the new Neuro was playing that card. I had a cardiologist once who was reading my holter test (pre-pots diagnosis) who insisted that my holter reading meant that I shouldn't drive because I could have this huge run of tachycardia while driving and cause and accident.

First thing I did was change doctors -- and in this case, I did not go to anyone again in his affiliated group. My current doc saw the SAME holter readings as the previous "specialist" and did not draw the same conclusions. I lucked out, that this guy knew about orothostatic intollerance.

Depending on how much you "trust" the cardiologist across the street you may want to consider a different cardio for your referal.

Makes you wonder if they know what the P in POTS stands for. Unless you have a convertable and have mastered STANDING in the drivers seat while shifting gears during mid-morning traffic ....

It is a hard road, no doubt they'll argue if you know the signs then why did you still pass out three times in the last three months. Be prepared with your answer and know that we are all here keeping a good thought for you.

Good luck on the road trip ahead of you.

EM

[blackwolf]

i'm so sorry you have to go thru this. i hope you get some better answers and a solution that works for you.

i also don't faint while sitting, however, when i get up i do. here(south dakota), that is basicly enough to lose your liscence for 18 months, pending a note from my cardio, i cannot get a liscence again. peroid.

at this point, i haven't fainted for several months, but with my near fainting, i am still "at risk" and will not be allowed to drive. personally, i have driven on 2 emergencies and would again, if i must.

however, in my case i also don't feel it is safe for me to drive as i become very symptomatic. sunlight thru trees, flashing lights(you do know that in most states there are only two seasons, winter and road construction), stress from bad drivers, ect... it just isn't worth it, i feel so sick sometimes, just from riding..

blackwolf

[DancingLight]

BLACKWOLF!!! THERE YOU ARE!!!! i hadn't seen your name in a while and was getting worried...as i am about several folks who haven't been on much! too many of us in the POTShole at one time!

Nina,

I hope the dr. is just being a bit cautious and will maybe turn around on this issue. I don't have any tips though...I don't drive at all anymore. I rely on parents, friends, taxis and services for the disabled. However, I've not really left the darn house in 4 months...so it's not much of an issue right now! However, for you, it is very important and I hope that a solution shines through soon for you!

Emily

[Guest Mary from OH]

MM,

I have no personal experience in this; however, it sounds like the neuro is getting a second opinion to cover his butt. My thoughts are with you. When you go to the EP cardio. Make sure he/she is a knowledgable dr. Is he/she on one of our lists? Do they know about POTS, dysautonomias, etc....? Also, make sure they have ALL your records. You will probably have to do another TTT as someone else mentioned. Remain calm, answer all their questions and reiterate about WHEN you have syncope. Also, Emily's idea about the heart monitor is wonderful. Try not to show your anxiety about the situation. Also, explain that if you ever felt like you were feeling too sick to drive, you wouldn't. This has nothing to do with syncope. Bring up your current driving record. Also, when you take the TTT, do so ON your meds.

My heart goes out to you and please let us know how things go. Your neuro just wants to cover his butt and now that he's made the recommendation that maybe you shouldn't drive and you still want to, he's willing to get more data. That's a GOOD thing!! He didn't flat out say NO and turn you in to the state. So, go to the EP dr., see what they have to say and hope that they see the situation in the same light you do!!

[BuddyLeesWife]

Here's what we were just told by a neurologist. If you have an unexplained SEIZURE, then Michigan law requires that you do not drive until you have 6 months seizure free or if cleared by a neurologist. If it was not a SEIZURE but syncope did result, he told us that the cardiologist has more leeway in clearing the person to drive based on the case particulars and effectiveness of treatment. I've attached the epilepsy website that lists driving laws for the various states but only as they relate to seizures. I just read the same laws for unexplained syncope but I can't remember where they are. I'll try to locate them for you; however they may also vary by state. At least when you read the rules on the epilepsy site you can see that consideration is given to an aura or advanced warning so I think you have a good story of never having passed out while sitting.

Good luck - I'll keep looking.

http://www.epilepsy.com/epilepsy/rights_driving.html#m

[BuddyLeesWife]

FOUND IT - from the Vanderbilt Autonomic Dysfunction Center website http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4789

Driving Issues Related to Syncope

Patients with mild neurally mediated syncope have no restrictions on driving private vehicles and should have a 1 month event-free period before driving commercial vehicles. Mild neurally mediated syncope is characterized by mild symptoms (usually without syncope), occurs with warning, usually occurs only with standing, and occurs infrequently.

Severe neurally mediated syncope is characterized by severe symptoms (usually syncope), occurs without warning, occurs in any position, has no clear precipitating causes or occurs frequently. These patients are allowed to drive private vehicles after 3 months of documented control of the condition and commercial vehicles after they have been symptom free for 6 months.

Untreated patients with severe neurally mediated syncope are completely prohibited from driving.

[Miriam Poorman-Knox]

Nina,

When I went to Mayo and passed out there they told me not to drive for 6 months!!!!!!!! I said OK and left. My doctors know that the problem is only when standing. So if you don't argue, and as you are responsible, no problem.

Miriam

[Eli6596]

Hi

I am sorry about the possible restriction. Driving is a very emotional issue, understandably.

Some states require a physician to report the patient to the Bureau of motor vehicles if the patient refuses to stop driving when instructed to do so. I only know about Pennsylvania, Indiana and Illinois. The later two states don't require the physician to report the patient, and I don't know of any doctors that would if not required. I don't know of any physicians who willingly seek extra paperwork!

However, if a physician tells you not to drive, and you are then involved in an accident, you could lose money in a lawsuit brought against you by the person in the other vehicle. I know of Alzheimer's patients who have been wiped out of life savings.

If a physician is worried about your driving safety and does not instruct you not to drive, the physician can lose their license which means they could lose their job.

I hope everything goes well for you. The email before mine gave some good info about specific appropriate restriction guidelines. I would print it and show it to your doctor. It might reassure him so he does not worry about your safety, the safety of others, as well as your/his liability issues.

Karyn

[corina]

Nina, I'm very sorry. Not to drive anymore is a real PUNISHMENT. I always felt that my driverslicense gave me my freedom. Driving my car and playing my favourite CD always made me smile!!! I haven't been driving for 1,5 years now and I really hate it. Last week I sat in the car and tried to park it in front of the house (which was 5 meters). And guess what: I still could do it!!! I felt happy and sad because I'm not well enough to drive in traffic. The first thing on my list is trying to walk better and immediately after that I'll exercise driving! I just have to wait to get some better!

I'm hoping that they let you keep your driverslicense Nina! I know how it feels not to drive!

Take care,

Corina

[kristinp29]

I'm so sorry to hear this, Nina. Hopefully the cardiologist will be nice (for a change!) and everything will work out.

I'm rooting for you! Keep us updated!

~Kristin