I’m fairly new here, and I’m wondering how many of you can/can’t drive with this, or your symptoms get worse with driving?
My symptoms are really triggered by driving, and driving has always been the thing that I’ve struggled with most. Ironically if I could resolve this problem with driving then I would live with every other symptom I have. I hate that I can’t drive, I hate that I don’t have my independence, and that I can’t just get into my car like every other ‘normal’ person and drive to work or drive to visit family and friends. It’s affected my whole life more than any other aspect of this illness. Anyway you get the point!
I do also have a diagnosis of visual vertigo, which explains that I’m using my eyes for balance and I need to do vrt to retrain my brain to use my inner ear as main point of balance (as I understand it).
If anyone has managed to overcome this how did you do it - or does anyone have any tips - on this I go one step forward and 5 back.
Is it not strange how this effects us all so differently as driving now is not an issue for me but I CANNOT ride as a passenger makes the symptoms worse.
Now at first I could not drive due to the fear more than anything else…because I was driving when I had my really BAD attack last June. It took me a while to get back to driving as I do now most of the time with my husband in the car but I do manage t go to the local store by myself which is a step forward as most would say…
I can actually drive ok, and being in the car makes me a little motion sick, but I actually like it because it makes me feel somewhat normal (I don’t feel like I’m rocking while in the car) like I do 24/7 in my house. But I am like you right now where the computer, tv, flourescent lights sets my vertigo off and I feel like I am rocking wildly. I don’t know if this will get better for me in the future, I hope it will because i love watching tv and of course being on this board where everyone is so nice.
I think you and I have always had similar troubles in this way with visual vertigo and driving. For me now it all depends on how symptomatic I am. I can be OK driving or it can be bad, although mostly it’s been fine for the last year and a half. I think if I got into a car right now though and did some extended highway driving, I might have trouble. The more I drive the easier it tends to get. Maybe I compensate again. It’s when the driving is long term and on the highway that I can really have a problem. If I’m on the highway and I’m feeling rough, I have to avoid keeping my eyes fixed straight ahead while the scenery flies by. Rather I keep looking all around watching things pass by etc and it reduces the bad effect. I know if I’m in trouble while driving because I’ll start feeling my stomach drop or I’ll get little shots of adrenalin. Once out of the car, I will feel as though I’ve had my fingers plugged into a socket. It’s like an electric charge is running though me. I usually hand the keys over to someone else at that point and rest.
On an SSRI, I was fine driving presumably because it was keeping the MAV at a very low level. I was able to drive about 5,000 km up and down Western Australia in 2006 on it with no issues except at the outset. I had just got over a head cold.
I wonder if we have a bigger hassle with this because of VN damage?
Isn’t it funny how this affects us all differently yet in some strange ways I’ve also found similarities in what you all said. Thanks for your replies. I’m sure that if I could figure out this bit of the puzzle for me then it would unlock some cure for me - or maybe that’s wishful thinking.
A lot of what you have said, Timeless and Dizzyinaz, is similar to what another dizzy friend has said - that you feel better while driving. Well done Timeless on driving to the store - you’ll gradually go further and further I hope as time goes on. I find it interesting that you were driving while you had your really bad attack last year - that’s also when I’ve had really bad attacks. Dizzyinaz - I totally get what you mean when you say it makes you feel normal and that you don’t feel you are rocking. I feel my strangest when I’ve been driving and then I’m stopped eg at traffic lights. The absence of motion then feels really weird, and I’m relieved to be going again.
Scott, it’s like you’ve taken my thoughts out of my head! I too get the stomach dropping and I usually try to do deep breathing into lower stomach then to ward off any panic or adrenalin shots. I totally get the wired ‘finger plugged into a socket’ feeling, and usually after a drive where I’ve been more symptomatic I’ll feel my eyes darting all over the place, and edges will seem very bright/sharp, I might be slightly bumping into things or not quite seeing corners, it’ll definitely take a while to calm down and be able to concentrate on a computer monitor or some text or a newspaper. I do feel this is related to the VN damage - I’ve never managed to get that much driving done since I had the initial labs - I feel I’ve never compensated enough maybe…?
I’ll feel my eyes darting all over the place, and edges will seem very bright/sharp, I might be slightly bumping into things or not quite seeing corners, it’ll definitely take a while to calm down …
Yup, I get all of that apart from things seeming bright. For some reason I have avoided any problems with light sensitivity. If I have a bad headache then I prefer low light but it does not cause any increase in symptoms. Just feels uncomfortable because my head hurts. I have a feeling you would do well on an SSRI actually, that is, if Topamax fails. The SSRIs stop all of that hypersensitive, eye-darting garbage (I hate that). You won’t have the electric feeling either in your body after driving. It really does normalise that.
Wow Scott - I’m amazed at your statement - “Once out of the car, I will feel as though I’ve had my fingers plugged into a socket.” I get that too and it’s the strangest experience and an awful one! But, at least it’s nice to know that it is a symptom of MAV and I’m not imagining things!!
During my first year of dealing with this stuff, I decided to take a trip to visit my family, and since I was afraid of what flying would do to my dizziness, we decided to drive. After about four hours of driving, we stopped for lunch and my system was so jazzed up and I felt like my whole body was buzzing - I thought I was going to jump out of my skin. I was terrified. Needless to say, we spent the night where we were, I took some valium the next day and my husband drove home! It’s gotten better since then and I’ve been trying to gradually build up with my long distance driving (did a 3 hour drive last week with minimal effects). I have found for me that small doses of valium (0.5 mg) before the drive and after usually help. I’m actually going to be making a four hour drive later today for work and I’m a little nervous about it - but it will be a good test to see how I respond.
Great to see you on the forum!
Yeah, I hate the buzzing too. It’s really awful and freaky and the only reason I can think it occurs is because the nervous system is charged right up – probably the “fight or flight” centre is kicked off by the screwed up vestibular system. Did you have VN or do you think it’s purely migraine? I remember standing in a line at McDonalds after a drive like that and I could barely stand there or look at the menu on the wall. Eyes were flipping out. The only thing that will make me feel electric like that is driving or playing guitar for too long.
So today I picked up Prozac and tomorrow will kick it off at 5 mg. Let the good times roll!
Before Topamax, I was heading down a path of probably losing my driving ability. And there was no way I could be a passanger anymore. Now I can do either with little to no trouble at all. I just don’t do it for super extended periods to avoid getting triggered from “over stimulation” but to do what I gotta do, I am fine now. I remember this time last year, getting behind the wheel was like tripping on acid. Everything was wooshing by, I couldn’t follow the road. It was starting to get dangerous. I even started actually getting sick and I threw up once for the first time in my life last April. However, today, after getting on Topamax, I have zero issues behind the wheel thank God. Medication is an amazing thing. Once you find the right med or the right combo, you get your life back, or at least most of it. I thought I would never get here. So those who are still struggling, keep pushing, keep trialing meds, and NEVER give up. You might pass up on that med that makes this thing go awaY!
Thanks Scott - Glad to be here and thanks for pointing me in this direction. It has been really helpful. For the past two years I have kind of skimmed over the MAV stuff on the message boards because I didn’t think it applied to me - and now I feel like I have a lot of catching up to do since being diagnosed with MAV in Feb.
I don’t know if I have/had VN or not. I have recurrent BPPV and my dr. also diagnosed me VN during one visit, cervical vertigo during the next … kind of funny. I don’t think he knew what to do with me. But - because of the BPPV I know I have vestibular issues so I don’t know if the buzzing feeling is from the MAV or vestibular or what … I just know I HATE it!! But - the good news is that I just completed a four hour drive today and I feel pretty decent. I felt a little jumpy and my eyes were a little jumpy when I stopped, but not too bad!
Good luck with the Prozac!
(By the way, I still haven’t heard back from Dr. Hain on what the VEMP test indicates. It showed some asymetry, but I don’t know what can be deduced from that - I’ll be interested to see if that has any impact on his diagnosis.)
Hey ssdizzy - I wondered how your drive went - way to go!
RIch - thanks for the post - it’s really encouraging to hear you are so well recovered, and thanks for the really encouraging words. I’m at the point where you were last year and it really gives me great hope that I don’t have to sell my car just yet. I was actually making great strides with everything and actually starting to feel normal but then I had vertigo a few weeks back and I’ve regressed quite far - just got to spend time building it all back up again, sigh!
Scott - how is the prozac going?
It’s only day 2 on Prozac and I don’t feel good at all. Headache is worse and I’m slightly dizzier and my gut feels sore. I feel really antisocial too. Hate this feeling. But increased headaches are the norm when starting SSRIs for some and I’ll just have to tough it out. My sleep was affected last night too. I woke at 4 am and couldn’t fall asleep again for about an hour. Mind was racing. Ugh.
I’m going to make an appointment with my dr tomorrow to switch to an ssri. All the stuff you and other people have said has got me thinking, and a recent downturn is the final straw! I’ve got a new monitor at work and I just can’t hack it, even though I’m spending very little time on the new monitor - I’m dizzy and all over the place. After 3 months on topamax I’m surprised I’m reacting this much. I remember your reaction in the past when you had to switch monitors was the same but that was a long time ago - I’d hope you wouldn’t react like this now.
I’ve been thinking about my general recovery since my initial illness 4.5 years ago - I think that the MAV interference means that my brain hasn’t been able to learn to compensate from the initial vestibular injury properly because the MAV has been getting in the way, which is why I react so much to driving or new computer screens or playing the piano or anything. I’ve never really tried to get the MAV under control before and this has to be priority now. It’s all suddenly clear to me - and this is what was explained to me - the neuro -oto figured it out but I’ve just remembered it.
Hope this is useful for someone - otherwise I’ve just been rambling on about my thoughts!
Hope you don’t get too much worse over the next few days - are you planning a quiet weekend or is it full steam ahead?
I remember your reaction in the past when you had to switch monitors was the same but that was a long time ago - I’d hope you wouldn’t react like this now.
I’m pretty good on monitors these days but can definitely be brought down if symptoms get bad enough. And still some monitors (Dell wide screens) will do me in no matter what. Luckily all of the products put out by Apple have no effect. I never thought I’d be able to use a large LCD screen again but I’m fine on a 24" iMac. It sounds like Topamax has just revved everything up for you again. What a drag. Yup, given the similarity of our symptoms it seems like an SSRI will work for you. The MARD paper supports this too.
I think that the MAV interference means that my brain hasn’t been able to learn to compensate from the initial vestibular injury properly because the MAV has been getting in the way.
This is exactly right and I totally agree. I just posted something on another thread where Prof Rauch makes this exact observation:
— Begin quote from ____
The migraine trumps every other dizzy diagnosis. Until I control the migraine, I really cannot treat the uncompensated vestibular neuritis, intractable BPPV, or Meniere’s syndrome.
— End quote
It’s great when the penny drops isn’t it? It took me YEARS to get this. You and I have been through pretty much the same thing and it occurred at about the same time. I’ll be taking it easy this weekend for sure. I looked back over my previous restarts on Cipramil and it was a good solid week of hell before things got better. Sigh.