Help With Neurocardiogenic Syncope.

[moneyformom2003]

Well here I go again! My cardiologist died last week. This condition drives me nuts and he is the only doctor I have found that helped.

I was diagnosed with neurocardiogenic Syncope 6 years ago and right now I am having a hard time. When it first started my heart and blood pressure would go really high and then fall, I would have seizure like spells ( pain in the middle of my back that radiated up my neck, jerking feelings in my kidneys that was uncontrollable, Tingling feet and hands, vision problems, sick feeling in my stomach, followed by HORRIBLE headaches and extreme weekness). I have taken Atenelol the whole time, but in the last year I have developed Anxiety, I hate to drive and am scared to stay alone in fear that something will happen to me. It is driving me crazy. I just want to feel normal and the worst thing of it is no one understands my condition, at times I don`t. Most doctors tell me you have low blood pressure, but I sometimes wonder because it goes really high before it loweres. My sinuses are awful and I feel horrible most of the time. I don`t have many fainting spells, just alot of weakness. Excersising is a task, it just exhausts me.

If there is anyone out there that has the same condition and advise I would greatly appriciate it.

Can a person pass out driving a car? I think that is my worst fear!!!!

[samannran]

I have NCS, too. I hate to hear that your doctor passed away. Concerning driving, I've had to pull off the road more than once and recline my seat because I was so lightheaded. I was afraid of passing out at the wheel. I hate to drive, too, but I have no choice. I have to drive to work. Supposedly, people with NCS don't usually pass out while sitting down. However, I have fainted while sitting on the couch. I was having presyncope symptoms, sat down, called my mom for help, and passed out while on the phone.

[moneyformom2003]

I have NCS, too. I hate to hear that your doctor passed away. Concerning driving, I've had to pull off the road more than once and recline my seat because I was so lightheaded. I was afraid of passing out at the wheel. I hate to drive, too, but I have no choice. I have to drive to work. Supposedly, people with NCS don't usually pass out while sitting down. However, I have fainted while sitting on the couch. I was having presyncope symptoms, sat down, called my mom for help, and passed out while on the phone.

I too. I have to lay down to feel better. Sitting just doesn`t do it sometimes. It is so scary, I just wish I didn`t worry about it so much.

[Ernie]

Hi,

Some patients pass out sitting. Some don't faint but have bad cognition skills that don't permit them to drive.

[flop]

In the UK driving regulations forbid anyone to drive who is liable to loose consciousness. This means that most NCS sufferers are not allowed to drive at all. I am very fortunate that I have only ever become syncopal whilst standing and don't experience lightheadedness whilst seated. On the basis of that I was given an exceptional ruling that allows me to hold a driving licence, should I ever develop symptoms whilst sitting then I would have to surrender my licence again.

Living without a driving licence is very difficult but it is do-able. I had over a year without being able to drive, and I certainly couldn't walk anywhere without passing out. I found that the costs of keeping a car - insurance, road tax, MOT tests, servicing, petrol, parking were actually more than I spent on alternative travel. Buses weren't really an option as standing at a bus-stop was impossible. I became friendly with a local taxi firm, needing to travel 15miles each way to work and back 6 days a week - they arranged a contract with me so I paid a fixed price for regular journeys rather than the variable amount on the taxi-meter. By pre-booking my work taxis I saved a lot of money and it was actually cheaper than having a car.

I would beg everyone to discuss driving and their own health situation with their doctor - you have to consider your own health and safety but more importantly that of your passengers, other car drivers and pedestrians. I know that I couldn't live with myself if I passed out at the wheel and killed someone. If I ever think that there is a possibility of me becoming ill whilst driving then I will stop driving immediately, it isn't worth the risk.

Flop

[pat57]

I have NCS, what would you like advise on?

I will tell you how I manage.

First of all I would be disabled without my Norpace. I was 4 years without a drivers license, because of frequent seizures and fainting.

I now, do not stand still or sit still, if I feel any symptoms. This means I do not drive if I have symptoms. I can lay down and rid myself of symptoms usually in less that a minute. From TTT's its documented that my BP recovers in 15 seconds. However that may not be a 100 percent certainty and I have learned that I must act when I have symptoms or pass out or seize. I ONLY seize when I'm late with my Norpace- now. I may pass out when its 2 hours til regular dosing time. I can double dose if I'm not feeling right and I carry immediate acting Norpace if I feel the need.

second I manually regulate my BP, this means at the first sign of trouble I walk............. I have Drs. Note which state I must be free to move during meetings and I refuse to stand still- shall we say on command. In others words I will if I can. I also cannot sit still very long. SOOOO I can only do certain jobs. But that's ok- its working out.

thirdly and lastly- thank god for graduated compression stockings, I could not work without them.

As to driving my Dr. said to me its safe to drive if you drive less then 20 minutes and are not having BP swings when you get in the car. The point being its the change of position that starts the event OR the result of blood pooling which takes 20 minutes to manifest -sitting. Also there has been a clinical trial with drivers on Norpace and none fainted while driving.

[momofsara]

You can most definitely pass out driving. Sara did and luckily all she hit was sign post, and was not injured. The last time she was under the wheel of a car, she drove herself to the doctor's office and her b/p was so low, he wouldn't let her leave. Made her call for someone to come get her and when he found out about the accident she had, that was the end of her driving days. So please be very careful if you are still driving. She hates being dependent on someone to take her everywhere, but its better than maybe hurting herself or someone else. Take care and I truly hope you can find another compassionate and understanding as well as knowledgeable doctor. Take care, and gentle hugs--Susan

[Heiferly]

I have read in various places either 6 months or 1 year without any seizures or faints before you should be driving a car again, and even then you should get the "green light" from your neuro or cardiologist before resuming driving. You definitely can faint while driving. I do not have a driver's license or car anymore because of syncope and seizures though I never had one behind the wheel--just having them at all is enough to know that you don't want to put your own and other people's lives at risk. To me it is a cut and dry issue because it would only take one time to pass out and cause an accident and harm or kill an innocent child and I could never live with myself. It just isn't worth it, no matter how much hassle it is to get around without a car.

There are different agencies available to help provide transportation for people who can't drive due to disability. City buses often have programs that will do door-to-door transport for people who can't get to/wait at bus stops for whatever reason, so if you live in a city near bus lines call the bus company and ask about handicapped programs. Cab companies, as mentioned, may have special programs too. Social services agencies may have special programs. Epilepsy foundation may be able to refer you to programs as many people with epilepsy need to seek alternate transportation arrangements. Insurers may provide transportation to/from Dr. appointments.