Migraine

This is a weird one - I also have early stage CFS so it could be related to that - but when I am very fatigued, or when migraine is on its way, or in early stages, I often get this warped spatial perception, which effects me particularly when driving (or riding in a car). I can't tell how close I am to other things, which makes me very panicky when driving. I think I'm about to hit, or be hit by, other cars when there's plenty of room. A couple of times on long road trips, when I was driving by myself, I had to stop and stay the night in a motel not because I was falling asleep at the wheel but because I was having panic attacks at the wheel on the highway.

When Danny's driving, as often happens when it's late and we're driving home from something, I think he's going way too fast and not braking gradually enough. Now I am a more cautious driver than he is and I brake more gradually and don't speed much, so there's some degree of reality, but that doesn't account for it. Last night we were coming home from the movies and I had a very early stage migraine - only about a 1 - 2, but I had been very fatigued earlier, and had just been at a loud bright action movie. I kept gasping and braking in the passenger seat - and I knew it was just warped perception. I closed my eyes and did deep breathing to try to relax.

Anyway, has anyone else experienced this?

- Megs

Hi, Megan. I've never had the experience you are describing. But, do you honestly think it is safe for you to drive when this is happening? That's a toughie, I know, but I felt I really had to ask.

Nut, it's a good question. I try very hard not to drive when this is happening! I try not to drive when I'm tired, too. There were one or two times when I was returning home from Virginia (to NJ - about 7 hours door to door) from a business trip, didn't leave VA until 4 or so, got in slow heavy traffic, and I made it through Baltimore & then stopped in a hotel. I can do long haul driving just fine as long as I'm done by around dinner time.

It doesn't come up much. I work from home, and if I'm too tired I just don't drive in the evening. Now I have a teenager who can drive, and yes I sometimes get panicky when she's driving, but at least I'm not behind the wheel! Mostly it's when we're coming home from somewhere - Danny's driving. We plan it that way so I drive earlier and not when I'm tired, he almost always takes the return leg. I know I'm annoying to have in the car, but I suspect not dangerous if I'm not the one at the wheel! He can tell what's going on at this point. last night he put his hand on my knee and said gently "I'm being very careful, your perception is off." i hadn't actually said anything, just flinched a few times.

I have changes in spatial perception with my migraines. Most often, the first thing I notice is right-left confusion. When driving, two things happen to me. I do get something similar to what you're describing - I usually explain it as having the sense that everything is just moving too fast around me and my brain can't catch up. It also feels like there is more going on than I can keep track of at the same time.

I have occasionally completely lost my sense of where I was going, or had the feeling that I went on autopilot or something for awhile, then feel very confused about how I got to my present point.

If this happens when I'm driving, I usually pull over immediately and wait to see what happens next. (I do the same thing if I get vertigo - it's too distracting to drive and it scares me).

Usually the weird stuff passes and I'm able to drive - and I go straight home or to another reasonable location (like a friend's house) if it's closer, till I know for sure that I'm OK or till I'm able to take something to abort the headache that is on its way.

The migraine neurotransmitter shutdown process can travel anywhere in your brain, so weird stuff happens sometimes! I'd sure tell my doctor about it, though. If I were you, I might also consider neuropsychological testing to see if the spatial problems can be documented. I had very thorough neuropsych testing at one point to confirm my experiences that my cognition and perception had undergone some changes, and it was actually reassuring to me - I didn't feel so crazy about not being able to occasionally distinguish right from left, for example!

Be careful on the road! You can always pull off. Hopefully you have a cell phone for rescue if you need it.

Lynne

Holy whole herd o' cows, but that sounds scary. I'm glad you don't try and drive when that hits, and that you get off the road right away. It's also good you make sure Danny's driving at those times you seem from experience to be more likely to get trapped up in this.

Nut actually emailed the hosts wondering about Alice in Wonderland syndrome related to migraine. I don't know if that's what it might be, but I wouldn't be surprised if it's something like that. You might ask your doctor about the Alice thing.

Lynne you hit the nail on the head - that's what it's like:

quote:

having the sense that everything is just moving too fast around me and my brain can't catch up

I get the sense that my brain has had all it can handle and needs some shut-down time to re-calibrate.

I can't really tell if it's migraine related or fatigue related or both. i will definitely talk to the migraine specialist about it when i go in June. I know CFS and Migraine are co-morbid, not causing each other, but I have these odd perception things often when I am what I call over-stimulated or fatigued. Either the over-stimulation or the fatigue can lead to, or at least come before, a migraine. But I can get the tired/warped perception thing without a migraine, too.

That's interesting, Droolie, about Alice in Wonderland syndrome. Another thing I haven't fully investigated yet. I have to admit my initial reaction is like - "another thing wrong with me? I don't want to know!" But it always is better to know.

Yep, I've got spatial problems but I know for sure mine are Meniere's related. Something about the problems the brain has in dealing with all the conflicting Meniere's signals causes it. I haven't driven in a year and try not to get in a car at all because I drive Assistant Offspring WILD, pardon the pun. I guess my skillet emoticon is gone for good?

My spatial problems make walking difficult too. Contributes to my inability to tell where I am in space.

Now I'm intrigued -- I'm going to look up this Alice thing. Never heard of it.

Lynne

Oh, my gosh. Another piece falling into place ... I just looked up this Alice in Wonderland syndrome, and it explains a childhood experience I used to have regularly in the three years before my headaches started.

I used to wake up in the middle of the night feeling like my bed was spinning. (Vertigo is my father's main migraine symptom, and it became one of my main symptoms in my 20's). After I'd been "spinning" for awhile, I would begin feeling as though my hands were absolutely huge. If I moved them all around I could get the feeling to go away, but then if I let them rest again, they would begin to feel huge again.

I was never particularly bothered by this, since the spinning never caused much nausea, but I did think it was kind of odd. I've never had body distortion experiences other than those, but I've also never heard of them being part of a migraine aura before.

This is fascinating. I never would have made this connection without this thread. Thanks!

Lynne

Megs, I've recently started having this same thing happen to me occasionally when DBF is driving. I say "when DBF is driving" because I avoid driving now unless I absolutely cannot find a way around it. I don't feel safe behind the wheel, between this months-long migraine and the new tingling symptoms I developed a couple of weeks ago. I know my concentration isn't as good as it should be to drive so I don't get behind the wheel.

That said, I do occasionally notice the same sorts of things you're saying - that DBF seems to be driving too fast or coming up too fast on cars in front of us. Yesterday when we were on the highway, my brain couldn't process all of the other cars on the road, which was a very strange feeling for me. I used to take pride in how well I kept track of other drivers on the road, especially in trafficky conditions! Not yesterday, that's for sure. (I wasn't driving, though, so I didn't have to worry.) My eyes were jumping around from car to car as my brain was trying to catalog all of them - a sure way to make my head hurt more.

Here's the crazy thing though. As you know, I'm a Jersey girl so that's where I learned to drive. DBF is from rural Virginia, so he's a much more cautious driver than I am (or, than I used to be - I've slowed down since I moved west). So I know it has to be my perception that is off, rather than DBF's driving. He really doesn't speed or tailgate - I'm the only one who was ever guilty of that!

I'm not sure if any of this answered your question. At this point, I just expect my brain not to process things correctly since this migraine has been going on for so long.

Hi Megs,

So sorry you are going through this .

All I can tell you if from my experience I get this EVERYTIME I have a migraine. It is one of my reasons for not driving when I think I might have a migraine. I also never go far distances ever.

For me it usually starts with a spacy feeling, then almost like a kind of tunnel vision with things seeming to be speeding by on the sides and blurry and then spatial sense starts up. Bill actually followed me home one day (we were only a block away) and he said it seemed like I couldn't locate where the stop sign was (I was inside are track only going 5 miles per hour, but Geez). I was stopping way before the stop sign.

If Bill is driving I am constantly freaking out thinking he is going to hit something because objects appear to close or to far away.

And what Lynne said and you quoted is what I feel,

quote:

I usually explain it as having the sense that everything is just moving too fast around me and my brain can't catch up.

When things are wizzing by like that, I have Bill pull over about every 15 minutes because I am so nauseas and it like I have to let my brain stop.

Lynne and Megs-

Went I saw my new nuero. He said that I have "Alice in Wonderland" syndrome. We did not talk about this spatial sense while driving (we did talk about the blurry, tunnel, thing wizzing by). But I did not specifically say spatial sense. I will next time. But, I think he based the diagnoses off of this: Sometimes (not as often) I also get this wierd feeling of being "bigger" then the furniture. Mind you, not hugh, just taller. Very strange. It usually happen during aura stage.

I hope this helps a little.

Dar

I'm going to second the opinion on Alice in Wonderland syndrome. Feelings of spatial abnomalities is a common symptom.

I'm convinced I had it as a child and Kath did, too. My bed would feel very small in its corner and the rest of the room was huge and the door was far away. It disappeared as I got older but then Kath would say things felt far away. I understood and told her she was just tired, but I wrote an article on it and decided that's what we had. Very scary for me at the time, and for Kath, too.

When I was researching the article, most info I found said it happened in children, but the more I read here, the more I think it's equal between adults and kids.

quote:

That's interesting, Droolie, about Alice in Wonderland syndrome. Another thing I haven't fully investigated yet. I have to admit my initial reaction is like - "another thing wrong with me? I don't want to know!" But it always is better to know.

Megs, I TOTALLY can relate! I often have the spacial thing, both when Im driving as well as when DH is driving. Or in the house, walking around.

I also do the thing Lynn said:

quote:

have occasionally completely lost my sense of where I was going, or had the feeling that I went on autopilot or something for awhile, then feel very confused about how I got to my present point.

Because I often have daily migraines as well as the hemiplegic ones, it hapens more than I would like. But it usually is with the worse migraines that I forget where Im going etc.

Never thought about the Alice in Wonderland thing, though I have heard of it. I have had seizures during my HM, and I have those seizures where my body isnt convulsing but im off in space type thing. Cant remember what those are called. Yet neither my Neuro OR my PCP has bothered to send me for an EEG... HMMMM(or is it EKG..dang always get them mixed up LOL) ok off my about bad Drs now...

Sorry your dealing with that Megs. Its NO fun. I went from day before Thanksgiving untill after New years without being able to drive ONE time. I know how ya feel. I am glad you pull over and take it easy! and im glad im not the only one driving DH nuts while HE is driving (He drives trucks and loaders for a living, and here I am freaking every time he is at the wheel LOL)

anyway,

Tawsha

Hi Megs,

Like Droolie said, Nut emailed the hosts wondering about Alice in Wonderland syndrome and here's the link Teri provided:

Alice In Wonderland Syndrome-The Basics

I hope this helps.

Take care!

Hi all - thanks for the discussion. The article is interesting - I can't say I have that shrinking/enlarging body part sensation now but I can remember vividly having it a few times as a child. Don't remember any migraine pain following it. But then I don't clearly remember any migraine pain until my late teens.

It is so helpful to hear those of you who have had the same or similar experiences. I shared this thread with Danny too so he would know that he's not the only driver being driven nuts by a migraineur passenger! He appreciated that. He said "it always helps to know you're not crazy."

I will definitely look into this more and talk to the dr. about it.

- megs