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Just an informal question- after llcvsmom's (I so hope I spelled that correctly- if not, my apologies) question about Brain MRIs; lots of talk about vision, since my initial onset last April had very little vision issues. When I was super tired maybe- blurry vision, double vision... And constantly enlarged pupils. Now, over a year later my vision problems are scary. For example- when look i look at my phone- I SEE two phones I know it's one. It does make texting a little easier- I have 2 keyboards even though there is only one there. My vision actually splits them in half. I known vision. Is a major stressor to me and as usual, as I always hear- "You have bigger fish to fry" and my neurologists won't even talk to me about it. Last two weeks, the double vision has been so bad ... I HAD to talk to him- he just left me a message telling me just to go to a regular year whenever it's time for your check ups. I also have a smaller communicating artery on that side- both pupils usually stay dilated always and my left artery is 25%bigger. Plus all my other issues that I have, especially syncope which has progressed to sitting syncope. Oh, another thing! Tell me if this happen- do you ever see things out of the corner of your eye- like perififial vision.

Anyway, due to these issues and others I haven't driven since Oct. 2010. That was HUGE thing- another piece of dignity and independence- gone. So how many still drive or have stopped?

Jen

boutvv

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Had to quit work, which meant quit driving in 2009.

As of February of this year I was told NO more driving by my Docs and cannot renew my license.

Even though I hadn't driven since 2009 for safety, hearing NO still hurt the dignity, so I understand.

Mine is vision related too..... see the thread I started titled "Katybug~your my hero".... My symptoms and how she describes hers is why I quit driving.

I have always loved to drive and drove for a living. I grew up wanting to be a big-rig driver, strange dream for a kid right.

Knee injury prevented that big-rig over the road part, my best friend is living that for me and I get to go for rides when I visit her out of state.

So I did all kinds of other driving jobs and loved every minute until I started getting really sick.

I worked night shifts mostly too as I used to see better at night but that went out the window the same as everything else driving.

I do think working long shifts and nights contributed to getting me to the point of so sick I had to stop working. I had been on and off sickly for years and I think I just pushed my body over the limit.

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I quit driving in 2000, about 5 years before POTS hit. My vision was like a "drunk" person, where my eyes would drift, and had to keep bringing my eyes back to the road. I self-imposed the no-driving thing. It was very saddening to have that freedom gone, but I'm just used to it now.

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I think the driving thing is a super sensitive issue and we all have know ourselves really well to make that call.

I haven't driven since POTS hit in Nov 11. For me my vision isn't the problem (although I have had double vision when really potsy and have floaters sometimes- as you mentioned Jen, out of the corner of my eye), as much as blood pooling is. When my feet are down while sitting (without the tachy to pull the blood back up) the pooling is bad, I get really lightheaded and my ability to process information is quite impaired. I don't feel like I would be able to process everything going on around me while driving and react quickly enough, plus I just feel awful. Sometimes I can't process everything going on around me in my own house. As much as I would love to be able to be out there, I wont do it - at least not at this stage. It means I have to rely on others alot, though, which is definitely tough.

I was a Victim's Services volunteer, so I've been touched by the stories of many people whose lives changed in an instant because of preventable road crashes and my husband is a firefighter, so deals with people in crashes often. Soo much heartache that people go through... For me, a vehicle is just too powerful a machine for me to be willing to take chances with.

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Thanks for all the replies. So it sounds like most of us self imposed our driving privileges. I did as well, but would never want to hurt another family or my own.

Peace- funny- you mentioned my other 2 concerns. The pooling and the Cognitive Issue. I have some loss of function and I'm afraid it would be that extra second or two that could make all the difference making a decision that could be the difference between an accident or near miss.

Sounds like most you who have responded have adjusted quite well. It just seemed like it was one more thing... But like you, I will adjust to this like I have to everything else. The list has to end somewhere, right?

So it seems as if most all of have vision issues. Who do you go to? Double vision, not seeing letters or being able to type? I've never even had an initial exam for all of this so I assumed it was neuro related. I think I also mentioned my pupils and issues with those so don't see at all at night. So who would the correct doctor be? Thanks again everyone

Jen

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I live in the city so don't need a car. I didn't drive for about 1 1/2 yrs after getting pots. It took me several years before I could get comfortable getting behind the wheel by myself and a few more before I could drive long distances.

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Jen, it is a neuro opthamalogist that you would want to see...I drive short distances when I am not symptomatic. Before diagnosis and medication, I was so dizzy and had severe vertigo, that I had to stop driving, because I was misjudging curbs, and messing up the sides and undercarriage of my car. It was very scary. I also have vision issues, binocular defect from the virus that started it all, and the blurriness from having dilated pupils when symptomatic. I've also had unequal pupils, but figuring that is the dysautonomia, too, that causes blurry vision even with a proper prescription. I'm not as tachycardic, so my dizziness/vertigo has improved, so I do drive some, but would prefer not to. Like you said, I don't want to hurt anyone...Right now, I'm feeling better than usual, so I have driven more, but this is not usual, so I play it by ear, but it is all 5 minutes from where I live. I used to travel 7 hours to see my mom by myself before becoming ill. That is not at all possible anymore, and makes me sad, but it is, what it is...I've learned to accept my limitations. -_-

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Jen,

I've seen Dr Marilyn Kay, a neuro-opthamologist from Milwaukee (Offices at both Aurora St Lukes and Medical College/Froedtert) twice in the past decade. I just got a letter saying she is moving her practice to UW in Madison. Should be a shorter drive for you. She isn't warm and fuzzy, but she is thorough and competent. Let me know if you find a different doc.

Lyn

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I'm almost 17 and I haven't been allowed to drive because of how bad my symptoms of POTS and NCS are (I wouldn't for the fear of killing someone) but it is hard to see all of your friends driving and not getting that freedom. I always feel so dependent on people and like I am a burden to them because I live out of town so it isn't convenient for people to pick me up and take me places. Unless my symptoms were for sure managed I would have to go a year without passing out before I can start driving!

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Thank you all again for chiming in. Lyn, I will start looking for yet another doctor. Not quite sure why my neuro wanted me to see an optometrist? Rule things out.

Lyn,

Would you RATHER see another doctor? If not, I will research her and see about her. If not, then I will start looking. Maybe I will find one for both of us. I'm in La Crosse which is kind of Central Western. You don't have to say exactly but where abouts are you n the state? Give me your thoughts and let the research begin.

As many has mentioned, I'd NEVER drive for fear of hurting or worse someone or one of my kids. But it I would have never imagined a year ago that this illness would bring me here. Right now, my flare is very bad- I'm lucky together out of bed. M hubby has to do everything for me. Like I said, driving is another thing (but a big one) on my growing list of things I can't do.

Jen

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I haven't driven since March of 2011 when the spaciness (my driving limiter and my worst symptom) started. I wasn't really much of a driver before (I drove, but rarely alone and we don't have a car), so I already had to pay a lot of attention. But now I can't pay attention to crossing the street half the time, so there's no way that I could safely drive a giant machine (like what AllAboutPeace says, "For me, a vehicle is just too powerful a machine for me to be willing to take chances with."). It hurts a lot to limit myself that way - a lot of the projects I want to do for my research I can't do because I can't drive to field sites. I have to think about where I want to go next for work (since I'm in school) - will it have good public transport? Can I walk or bus (ideally bus) all the important places? It's just frustrating and lately it's really been getting to me, but I'm still not going to break the self-imposed restriction because it just isn't safe.

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