Driving

So I’m a 24/7 rocker with no actual headache and have never identified any triggers. I do have all sorts of head pressures, dizziness, and the dreaded mind numbing brain fog.

The biggest problem I’m having that is making life most difficult is Driving a car. It feels HORRIBLE.
Since increasing to 20mg Ami (am now back down to 10mg and thinking of switching to Topomax) in mid-March all symptoms have increased. I can barely make it a mile to the grocery store. And that’s after weeks of small short trips around the block to build my confidence. I wouldn’t call it a dizzy feeling, but it just feels like I HAVE TO STOP. I must concentrate hard and constantly re-focus and blink my eyes hard. It gets terrifying if I have to keep driving,then I get panicky. I’ve tried a little deep breathing as I drive but that only abates the feeling for a minute or two.

Before going on the Ami, I could make it around my local area no problem. Longer drives over 20 miles would set me off.

I’m so weary and frustrated having my wife adding chauffeur duties after a long day at work and repeatedly having to make my daughter asking her friends for rides everywhere.

Has anyone else experienced this and/or conquered it?
thanks,
John

Hi John,

Sorry to hear you’re having problems driving. Although I’ve had problems with driving, it’s been quite a different experience for me, as I had bad rotational vertigo to start with, which obviously made me unsafe to be driving, so I didn’t drive during those spells. Then once that had resolved I had many months where driving just didn’t feel quite comfortable, but it was more to do with when I stopped (e.g. at traffic lights I would sometimes feel like the car was slipping backwards when it wasn’t) and when I got out of a car I was really off balance and unsteady for a few minutes until I seemed to re-adjust. These feelings gradually stopped but only once I’d got my medication sorted out. So although your car-related problems aren’t the same as mine, I was wondering if you do need a change of medication to help you out? It certainly seems that your current medication (or at least that dosage) isn’t helping you if your symptoms are starting to increase again.

Hi

I am going through a similar thing to you. I have suddenly become very phobic about driving. I am OK if I drive a short distance in my local suburb in a single lane but if becomes double lane and the road runs straight ahead for any distance I go into a complete panic too. I prefer corners and to go very slowly. Freeways are completely out of the question! It feels like I can’t trust my judgement and my eyes go all funny and hazy as well and I try blinking and concentrate really hard and even shake my head to try to clear it of the fog. So I really sympathise with you. I wonder if the vestibular system isn’t impacting on our sense of balance and making it more difficult for us to drive (Re: Dr Levinson’s theories).

I currently take 2 mg of Xanax a day and have finally started Topamax after having been to scared for a year. I started really slowly and I’m currently on 50mg. I haven’t had any really bad side effects just some tingling. But I haven’t really had any significant good results yet either. I’ve been on it about 6 weeks. I still get these migraines that seem to come on monthly for three days and nothing helps to ease the pain. I also haven’t noticed a difference with the dizziness. I have a real problem with a slight tilting to the side when I walk, patterns in tiles and carpets (they seems to move from side to side and up and down) and strong light.

Beech, Dizzy thanks for your replies!

Beechleaf, what medication have you found works for you?

Dizzyloopy, I’ve got all sorts of curving roads and hills around here, it’s very uncomfortable. And if it’s a busy road with no shoulder to pull over I get quite anxious. I’m trying to small drives everyday so I don’t totally become phobic.
My neuro wants me to try Topamax as well. The list of side effects don’t sound to good so I don’t blame you for being hesitant. I’m going to be brave like you and start later this month.What dose did you start on?

John

Hi John

I started by cutting my 25mg pills in half and taking a half dose a day for one week then increased it each week by a half until I reached 50 mg so it took a month. As I said I’ve been on the Topamax about 6 weeks at that level but have just increased it to 75mg but I might cut back to 50 mg and stay at that dose for 3 months and see what happens as 50 mgs seems to have helped some folk like Rich. I get a bit of tingling and I thought that my anxiety increased a little but I may have been anxious about taking the medication. Anyway that seems to have settled down. Don’t read the horror stories like I did and just give it a go. It may just be the med. that gives you your life back. I hope it is for me! Do you take any Benozo’s?

As for the driving I think I’ve just had to accept that it’s something I can’t really do right now as I don’t want to put my young kids lives at risk. It’s a pest but not the end of the world. There is public transport, I do have a pair of legs that I can use so I guess I’ll use them for a while and hope things get better. I think my brain gets overloaded by to much visual stimuli and sets off the panic. All the best and keep me updated with your progress on Topamax and driving.

I found on a recent long trip that I was blinking a hell of a lot. Then, after a couple of 2+ hour stints, I developed neckache/shoulder-ache sorts of discomfort. Logical consequence of keeping my eyes and arms very fixed, despite trying to move around, shift attention point, &c. This sort of tension has been associated with worsened MAV innon-driving contexts, so it seems natural to driving.

— Begin quote from “JohnZ”

Beech, Dizzy thanks for your replies!

Beechleaf, what medication have you found works for you?

— End quote

I take 80 mg propranolol per day (split into 2 doses of 40) and 0.5 mg of pizotifen at night. I took 1 mg of piz to start with, but now it’s settled down I seem ok with just half of that. I prefer to take less if possible as it stimulates my appetite. But unfortunately piz isn’t available in all countries, although I don’t know why.

— Begin quote from “dizzyloopy”

Do you take any Benozo’s?

— End quote

Dizzyloopy: My Drs have never mentioned Benzos. But I read so much about them here on the forum. From what I read it actually helps with the dizziness? Or is just to calm the anxiety. Do you take them, if so what do they do for you? Please keep me updated to your progress as well.

Beechleaf: thanks for the info. I’m glad you’ve found something that works for you!

David: thanks for your thoughts

John

Hi again John

Yes many of us seem to be on Benzos. I was put on them originally because I was suffering an enormous amount of anxiety. I take 2-2.5 mg of Xanax a day and have done so for about 10 years. I noticed that when I took it that I felt better not just in terms of the anxiety but in terms of the balance/dizziness business so I was less tired as I don’t think my brian was struggling so much with all the bombarding stimuli. Thus it gave me some of my life back. I have noticed that lately the Xanax is not working quite as well as it used to and this scares me as I have probably built up a tolerance and may need to switch meds. I am going to speak to my doc. about it in July. Hence my new driving problem…

I know it’s hard to convince doctor’s to give you benzos but they do significantly help people with MAV and the associated anxiety. Somtimes I wonder if I simply have an anxiety disorder or if it is MAV? I have suffered from migraines with aura since I was 13 (I’m now 44) and this buisness did happen after a really bad migraine headache in my early 20’s. Suddenly I was just permanently dizzy. Still holding out hope for the Topamax. Sitting on 50 mg and will be coming up to 2 months on it.