Driving

[sjprice23]

So, anyone who drives and feels comfortable enough to drive with pots? Please share your experience, tricks, cautions, stories from not driving to getting well enough to drive again, anything.

My biggest goal is to hopefully get well enough to drive again...I live close to the middle of no where, but need to drive into the city to get places and public transportation and rides are very limited for me. And if I can get well enough to drive, I think I will be well enough to work at least part time, not sure though ~ just what I am hoping to happen, of course!

Please share.

Sarah

[MightyMouse]

POTS alone is not necessarily a reason not to drive... it all depends upon the person's symptoms. Some people with POTS never pass out, and have not experienced serious brainfog issues and therefore are considered relatively safe drivers. Of course, individual considerations need to be made too--such as if someone is persistently dizzy, lightheaded and if they feel they can't focus enough to pay attention to the demands of driving.

More problematic is syncope (passing out), which is common with NCS/NMS--and various other names. Here is an excerpt from what Vanderbit's Autonomic Center has to say on the topic...if you want to see the whole site, the link is provided at the bottom. To find the excerpt, skim to the bottom of the page I've linked to.

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.

http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4789

Nina

[Dizzy Dame]

I drive, but that wasn't always the case. When I first got sick, I was bedridden most days, and on days when I was well enough to leave the bed, I often fainted or collapsed (without fainting) without much notice.

However, over time, as my symptoms improved, I learned to tell the early warning signs for when I was going to faint. Also, the use of Midodrine meant that my BP was usually under control when sitting (but not standing). These two factors allowed me to feel comfortable driving short distances (less than 1-2 miles).

Now my syncope is totally under control. I haven't fainted or collapsed since April (knock on wood) so I currently feel comfortable driving for up to 20 minutes, but I try to avoid stressful traffic situations that can exaccerbate my symptoms (like rush-hour traffic). I also tend to drive only during my best times of the day, and I never drive at night when my symptoms are worse.

Hopefully you'll feel well enough to drive again! Just keep thinking positive: most people with POTS do improve with time and proper treatment.

-Lauren

[jenwclark]

I am often able to drive, but then I've never actually fainted. For me, the problem is brain fog. As mentioned above, one key is learning to tell when you're likely to become symptomatic. I seldom drive more than 15 minutes from home, and I avoid heavy traffic and high speeds unless I'm feeling exceptionally good, as these things make me tired and the fatigue can bring on brain fog.

spike

[JaneEyre9]

Before my diagnosis with POTS, I was a commuter and drove at least 2 hours a day while in school and working. When i suddenly became very ill, i was too dizzy and sick to even leave the house, so i had to stop working and give up driving. It was a big loss for me, and i had to go through a grieving process and sort of put it on the shelf.

Well over a year of treatment later, i found i had occasional times where i felt really well. I tried driving locally with an-able-driving passenger during these times. This has been a big step forward so far, but by no means is it a reliable source of transportation for me (ie for a job) because of all the limitations i list here:

I never drive when i feel symptomatic (dizzy, tired, not at my best)

I never drive when i have PMS or my period

I usually have a passenger with me if i choose to drive.

I don't take risks of driving on little sleep, or on an empty stomach

I always have a bottle of water with me

I don't drive far distances.

I try to avoid rush hour or stressful driving situations.

I find that at this point in my illness, going out for a short drive is very healing and relaxing for me. It has always been one of my favorite activities, so emotionally, it gives me a great boost to get out on a nice day. I always remember that driving is a responsibility and not a right, so i take it very seriously.

[Suzanne]

This is a major challenge for me. I was surprised by the Vanderbilt guidelines being so casual. I have been at both ends of the spectrum. Before diagnosis I drove everywhere without a problem. But after getting ill, I have been very dizzy and light headed and started restricting my driving as I just did not feel confident that I would not pass out. The brain fog also worried me as I did not feel I could concentrate when it was busy traffic. It got to the stage that I become fearful and anxious and suffered panic attacks, so stopped driving altogether. What a pain in the you know what not to drive. I have 3 kids and no family support, so I need to drive, and drive safely. After a few months of being reliant on people to drive me around, I saw a pyschologist to try and overcome my fears. Now 6 months later, I am driving, but with limitations and still battle anxiety, especially when I am very tired. Like others who have commented, I try and drive when I am feeling well (not that I actually ever feel well, but you know what I mean! ). I drive between 10-5pm if possible. Nights are out unless it is under 2kms. I also make sure I have eaten, have water and chew gum for nerves. If I have to travel further than my usual route of not straying more than 10 minutes from home, I take someone with me.

I encourage you not to give up, if you can drive a little it is so helpful, builds your confidence and hopefully will open up some work opportunities. I would try small steps, very gradually. If you would like to know my graded program, please message me and I will give you more details. When I drive I notice how many crummy drivers there are and think that I must be better than them as I am very aware of my limitations.

Good luck, keep us posted.

[bttrflyamby1981]

I can drive....after all while I'm sitting I don't get dizzy. (most of the time anyway) I no my limits so if I feel if I turn my head (to look out for traffic) that I will get to dizzy to drive, then I pull over or have someone else drive.

Most problems I have had with driving is more related to my migraines then anything else. I do have to be careful about getting lost though. I forget my turns sometimes......but I feel that I'm a safe driver.

As long as I'm not fatigued I do fine, but there has been times it was very hard to stay awake.

Good luck,

Amber

[the_dancer_grl]

I can drive as well. Couple of things that help me:

1. Keep a cell phone charged and ready so you can call someone to get you if you end up not being able to drive home.

2. Have several people in your phonebook that you can call as well as your doctor's phone numbers.

3. Be smart! If you start feeling bad pull over into a parking lot or onto the side of the road- somewhere safe.

This is the reason I'm allowed to drive at all, my parents (I'm 18) won't let me unless I do this and my doc. agrees. On campus I also have UPD in my phone.

Hope this helps! Oh, and I also keep a couple bottles of water and a salty snack in my car but that's just me!

Heather

[MightyMouse]

Suzanne, I don't think Vandy is casual at all -- untreated POTS/NCS are not permitted to drive, as well as treated POTS/NCS where the patient's symptoms remain UNCONTROLLED--that is, they are still having serious POTS/NCS -related events.

Nina

[sjprice23]

Okay, after reading all of these great responses and talking to my doctors over the past couple of days, I have figured out that it will be quite some time before I can drive again because they cannot seem to get my symptoms under control. I get too many side effects from medications, so all my docs want me to go through psyco-therapy to try to get some of it under control. And of course, I am going to give it a whirl, but I have always been very stubborn when it comes to any sort of therapy that is not just talking, etc.

And they want me to try getting my heart as healthy as possible right now, i.e. quitting smoking, which I have been cutting back on since I found out I was sick, but now it is time to quit...they had told me from the beginning not to just quit cold turkey, and not to use any sort of nicotine patch, gum or drug, etc. So, now that the weather is cold here in WI, it's time to quit and get out walking. It's cold!!!!! And only gonna get colder!!!! I will definately be quitting smoking, I was planning on it within the week here anyways, but walking outside, in the cold, cold, yikes! This will be fun!!!

So, they figure it will at least be through the winter that I am not going to be "allowed" to drive...which is fine...my car needs new tires before the snow hits that I really cannot afford right now. So, if I can't drive, I don't have to get the tires until next year!

[shannon]

There have been times when I felt that I shouldn't be driving, but for the most part I think it is medically safe for me to drive. On longer drives, I try to pack lots of fluids and salty snacks and make sure I am well rested before driving. I only rarely have troubles with it.

Hang in there!

Shannon

[Leigh]

I agree that you shouldn't drive when having PMS or on your period; my symptoms are always unpredictable. What also works for me (and I just know people are going to gasp at this) is to drive an SUV instead of a car. When I drive the car, my head spins everywhere and I have to pull over and let someone else drive. When I drive the SUV this is perhaps the time I feel the best symptom-wise. I believe it's because I'm above the traffic rather than in the middle of it. Before all the anti-SUV people attack me for endangering others, I will say I mostly drive locally and only when I have no other option.