Jump to content

Recommended Posts

I'm new to this forum. Hope I can learn more about my condition.

I started having symptoms in November '08, about 9 months after having cervical surgery for stenosis (C-4 thru C-6 vertebrae were fused). I've been to multiple cardiologists and neurologists since then. Was diagnosed with NMH after a tilt table test. Have been on midodrine, fludrocortisone, propanolol (40, 80 & 160 mg), Paxil, and occasionally klonopin, but none have made any difference that I can see. Not even sure I have NMH as my blood pressure doesn't necessarily drop much when I'm dizzy and my heartbeat doesn't increase much. I'm going to the autonomic lab at Columbia Presbyterian in New York in a few weeks to see what they can find. Hope they are a good place. Has anyone else been there?

I'm also on a few other medications because I had an allogeneic bone marrow transplant for Leukemia 18 years ago, but I've gone off all of them, one at a time, to see if they were contributing to my symptoms . They weren't. I've changed my diet, worn pressure stockings (awful in the summer), also tried a variety of alternative med treatments & various vitamin combinations that have been recommended to me. None have had any discernible effect.

I've only passed out once, but I'm chronically dizzy and lightheaded, even as I write this.

When I drive (rarely nowadays) I feel like I'm drunk after a few minutes. I've gotten pretty good at avoiding situations where I stand in one place, like check out lines during peak hours. And I've learned I can delay the onset of symptoms by jumping up and down. But there's not much I can do about driving. Because I live alone & I'm miles from any stores I sometimes have to drive farther than I feel comfortable doing. I find rides as often as I can but often this isn't possible. Does anyone else find this the most difficult problem to deal with?

Link to post
Share on other sites

Hi David~

Welcome to our Forum! I know what you're saying about driving. It's not the worst of my symptoms, but it's definitely a major one. There are times I know I shouldn't be driving, but sometimes I have to due to a doctor's appointment or needing groceries/prescriptions/etc. Luckily, I live within about 3-4 miles of most places I need to go, although I'm in the center of Tucson, which makes for a lot of busy streets.

You're doing what you can to avoid driving, which is good, and perhaps you could do some other things, such as getting your groceries/prescriptions delivered. Too bad we're not back 75 years when the doctors used to come to the home!

Take care,

Jana

Link to post
Share on other sites

I've had difficulty driving too. Last summer it was at it's worse. I do okay for short distances.

What I notice is I have a tendency to hyperventilate. It seems like I get anxious when I drive and I don't know maybe the position isn't good either.

But I get both the visual effects and physical effects.

I take my daughter to school three days a week and pick her up. This keeps me in the car.

My only other trips are to the store or to work.

I have a lot of difficulty if I have to drive across town and drop the kids off before work.

Honestly I'm shot at that point-spent. I almost have to recover as I get to work so I can start my shift. :lol:

Whether I have the nerve to hop on the highway varies.

For a long time I didn't. Couldn't handle it.

So I take a real long route which almost makes it worse cause then I'm on the road a lot longer and I'm thinking-I just want to get home.

Then I have my daughter's weekly trip to dance. It's a good 30 minutes or a little more each way from our house. Oh I cringe every Thursday night. Sometimes I have had to take a Xanax just to handle it.

The driving thing really bites.

lieze

Link to post
Share on other sites

Hi David-

I also find this difficult. I don't see my family an hour away because I can't drive that far usually.

I'll tell you I bless this forum - someone had been to Dr. Grubb and been prescribed 10 mg Adderal in the AM and Midodrin 10 mg starting at 12 and every 3 hrs. I had been prescribed these meds by different docs but they all knew what I was taking. I ran that protocol by by cardiologist and he okayed and it has made a world of difference in my dizziness and ability to ride (still at 5 minute intervals) my recumbent bike. I mention it because it has made a difference in my driving stamina - saw my brother for the first time in months last week.

A couple other things - wear big sunglasses, adjust the seat ( if you have an electric one) so blood doesn't pool, and have a firm u-shaped pillow for your neck. What you are trying to do is minimize outside influences into your sphere - For us, everything is a drain on the autonomic nervous system - normal people can balance it out but we have to work at it. So you are reducing glare, minimizing sound (the radio or CD sound not be heavy metal, for instance), and avoiding stress and trying to live.

Make sure you are drinking at least 64 ounces a day and getting a lot of salt. When you are out, keep a plastic bottle of water handy - you can keep a faint at bay if you chuck it down when you feel one coming.

Best of luck. Let me know how it goes at Columbia. Albany Med wanted to refer me because they did not have a dysautonomia specialist.

Noreen

Link to post
Share on other sites

I personally haven't driven at all since my first faint. It's probably been the hardest thing about all this for me, just not being able to jump in the car and go wherever I want. Even now while I don't faint or have dizzy spells with the frequency that I did before I am still not comfortable driving. I can't imagine how I would live with myself if I passed out behind the wheel and hurt someone. My husband now drives the lovley new car we bought for me only 6 months or so before all this started lol, oh well, at least he enjoys it!

Link to post
Share on other sites

I'm terrified of losing my license. Last ER visit I got the "I have to tell you you shouldn't be driving" lecture. I went 3 months without driving when I 1st developed POTS. I saved a whole lot of money but it was not fun for any of us!! It's such a hard decision. The only way I justify it is I've never fainted sitting down. I do really have to focus because it's very easy for me to space out especially if I'm over tired.

Brye

Link to post
Share on other sites

Well, if you have POTS do not listen to this advise. I have OH and NCS. SNRI's

have changed my life. I have not been able to stand still for over 10 years without symptoms.

I was put on an SNRI for depression and poof- gone.

I , previously, wore compression stockis and rocked my legs back and forth while driving. Helped me. I am also on Norpace without which I was functionally disabled, and did not atempt to drive.

good luck

Link to post
Share on other sites

Sorry to hear you're going through this, but I understand and besides me having to rely solely on others, it makes me feel incompetent that I can't even drive.

I passed out in Jan 09 driving and been on driving restrictions since then, life has certainly changed and it's extremely hard coping with part of my independence being taken away.

A word of caution about driving: I don't know how it is in other states, but I was told (FL) that if I had it in my medical records I had syncope or near syncope and I had an accident, my insurance wouldn't cover the accident. I don't know what I would do if I were in your shoes, I feel really bad knowing you live alone - at least I have family and friends here who help me with errands that my husband can't get to.

What about a local organization to help people who are disabled? Not saying you're disabled, but in a sense we all are that can't drive or have problems driving :lol:

Link to post
Share on other sites

What I'm particularly afraid of is hurting someone else while I'm behind the wheel. I drove through a red light once. What if someone had been in the intersection? I think I would have noticed but I'm not sure.

Since then I've restricted my driving. Not at night. Not more than 20 minutes at a time (I take a train to visit my girlfriend who lives 30 minutes away). Not more than one outing a day. My back seat is littered with half filled water bottles. I bought a Volvo because it is supposed to have great safety ratings. But mostly I call on my friends whenever they are available. Though I'm worried that they will get tired of always being on call.

I tried walking to the nearest store once but ended up lying on the grass by the side of the road, shaking and sweating. Haven't tried that again.

thanks everyone for the advice

dave

Link to post
Share on other sites

I think the hardest part is realizing that one should not drive anymore. In Ma if you hit the floor and pass out you can't drive for 6 months. Many meds have warnings on the and are like taking a glass of wine and driving. I think many BP meds make people more forgetful and delay reaction time. They say that most accidents happen right around the area of our own home.

The burdens put upon our neighbors, children, family and friends become a big strain. Once we go to neuro they start evaluating our ability to drive and do any skills. I grounded myself for now, but live with the hope that one day I'll not have to take cabs and taxis everywhere to lessen the burden on my loved ones. I save the days with them for make precious memories having as much fun as I can even is I have to fake it for one day. Cause the little hugs and laughter from my grand babies are the best medicine I can get anywhere.

I live in hope that this too shall pass and pots will pass and I will be whole again one day~

I wish that for all of us here.

xxx's all around,

bellamia~

Link to post
Share on other sites

I had a couple times in the car where I got so tachy I had to call for help and have people come and get my vehicle and take me home. I just couldn't drive that way.

I always feel bad when that happens.

I am looking forward to the time my oldest can drive. I may let him take over at that point if I am still feeling this way. I hate to put that on myself. Let's just say I am trying to look forward to that day when I can get some help with it and not assign where I will be at that point. I have to take one day at a time right now. :)

Link to post
Share on other sites

My new wheels is a powerchair. I look forward to our floods drying up so I can go for a spin. When things changes something else opens up.

Link to post
Share on other sites
  • 1 year later...

Was going to ask this question, but realized that someone had already asked! My initial neurologist (the one who referred me to an autonomic specialist) said I should avoid driving for now. I live in a city with good mass transit and don't own a car anyways, so not driving is not a huge hardship for me right now, but it will be in the future (especially if I need to travel for work reasons). My main issues are that I get spacey and my eyes tend to blur, so I'm not really comfortable with the idea of walking, let alone driving a heavy machine on a freeway. Have folks been able to resume driving once they've had some treatment success?

Link to post
Share on other sites

I am feeling better than I was over the summer/early fall and will drive short distances now (2-10 miles) if I am having a "good" day. I wouldn't feel comfortable picking up my old commute yet of 25 miles each way. By the time I worked a shift and then tried to make that drive I would be in trouble.

Link to post
Share on other sites

No way would I ever drive the way I am right now...It would seriously be safer for a drunk to drive my car than me. I dont even feel safe to drive in my neighborhood to get the mail. I am too dizzy,vertio, lighheaded 24/7 that I can hardly walk. let alone operate a car. I miss it soooo much though.

Link to post
Share on other sites

dani, I feel the same way. I've almost passed out multiple times recently while driving and now i'm terrified. I get that "adrenaline surge" or something, still not sure what to call it, and everything starts fading, vision, hearing, my entire body goes into a heat flash, of course, dizzy/lightheaded. I just want to figure this all out. I miss driving too.

Link to post
Share on other sites

I quit most driving 10 years ago, and all driving after POTS hit. Up until POTS, I had eye "coordination" issues with driving--my eyes acted like a drunk person. After POTS hit, I still had the eye thing plus the lightheaded, racing heart issue that came with it.

Link to post
Share on other sites

Since I've started having seizures and still pass out at times, I feel that driving would be a very bad idea. Not just because I might injure myself, but because of the harm I might inadvertently inflict on others. What a nightmare that would be! It's very difficult for me to be stuck at home all week, and I have to wait to do things over the weekend when my fiance isn't working. Thankfully, he's a teacher, so he has the next two weeks off, and of course other breaks and summer. We get in all of my medical appointments during his breaks, if we're lucky. Fun, fun!

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...