My story and curiosities

Quick history: 26 year old healthy active male from MN. I’d get an optical migraine or two a couple times per year and realized perhaps 7 years ago that MSG was a trigger for me (it is for my mom as well) and if I ate too much of it I would have a headache for 2-3 days. Other than that, I really didn’t get many headaches.

Since September I had been having random seeming optical migraine/dizzy spells that would last a couple hours usually. I fell skiing going 40mph in mid december and didn’t hit my head and my neck was fine. My back was a little sore for a few days but otherwise I was fine. I got a cold and bronchitis after this and the antibiotics did a number on my digestive system so when I went on a cruise from jan 4-11, i had to get off partly because of that and partly because my seasickness (or some sort of vestibular dizziness) was bothering me too much (I had been on 3 cruises previously pretty much without issue.)

When I returned I had the mal debarquement qualities…felt like I was still on the ship while standing still…rocking etc. The rocking went away after 3 or 4 days but I was still ‘dizzy’ like around the clock. Not debilitatingly so, but just like, man, i’m dizzy, this is dumb and annoying. I decided I should get it checked out so I went to a neurologist who said everything looked fine but wanted an MRI the following week. That night (Fri) I had some sort of vestibular event. The world was spinning and I was miserable as ever. I was on and off bad through monday. I got valium that day and that calmed me down a bit although obviously didn’t rid me of my symtoms. I saw on like thursday and he was perplexed and didn’t seem to listen well and said it sounded like Meniere’s if anything so he put me on a low sodium, no alcohol, no caffeine diet (15 years straight of daily caffeine). I started that and then had all of the testing done. My hearing was excellent, all of the tests were normal, but they found a 41% weakness in my right ear from the caloric testing. I started Vestibular rehabilitation therapy the following thursday. Most of this time I was sleeping half sitting up as laying down flat made the world spin. By monday I could sleep on my left side (my usual side but something I hadn’t done in a month) so I figured hey this therapy must be helping. I was still feeling pretty crummy but trying to push through it and had a relatively active weekend (compared to being house/bed ridden for the previous number of weeks). I was feeling wonderful on tuesday. I called my mom at 930pm and told her I felt the best I had in weeks. 2 hours later I had an ‘attack’ The world was jello, I was very very dizzy again. Not to the extent of the first big event, but it was definitely hell. And I woke up feeling crummy and the next day and the ‘hangover’ effect and felt like I was coming down with a cold which I did come down with but it was pretty mild and only lasted like 3-4 days. I felt worse vestibularly during that time…like a hangover effect. It seems like the further I get from the events (migraines probably?) the better I am.

I thought the first doctor wasn’t really with the program so I wanted a 2nd opinion from a neurotologist (dr lavine) so I got an appointment for Feb 19th (3 weeks out). He said it’s almost positively not meniere’s (based on the testing) and while he didn’t know, it sounded most likely to be Migraine associated dizziness but it could be a fistula, a labyrinthine concussion, and/or vestibular neuronitis (the huge event on jan 20 that caused the vertigo) I think he said the unilateral vestibular weakness (41% right asymmetry) can be cause by migraine cutting off blood supply or something else. That was the one question I didn’t get answered and don’t understand.

He said the first thing we’re going to do is test for a fistula cause it’s easy (negative) and prescribe imitrex to take the next time I feel an attack coming on and see if that cuts it off at the pass and start with another occupational therapist. I had quit doing the previous ones exercises as I had that attack on a tuesday and the meeting with him on friday and decided it couldn’t hurt to wait. The therapist did some testing and verified what she called my vestibulo-ocular-reflex-impairment by testing my vision at holding still and at shaking my head back and forth at a speed far slower than life. She said I was pretty impaired (like 5 chart lines at 1hz or something) and told me to do the post it note at a 120bpm 3 times per day for 30 seconds. The previous therapist had me doing too much. This new one said if I feel worse 15 minutes after doing it, I did it too much and to adjust accordingly. I found that 120bpm was too fast so I moved off to 100 and it was much better.

I basically hadn’t driven since jan 20. (3 very short trips that don’t really count) And have been living with my parents (I own my own house, but having it all to yourself and not being able to leave just adds to the anxiety of all of this.)

After a week of the therapy, I couldn’t really say my vestibular system had improved any (maybe a hair?), but the quality of my life is better than before I started. More and more and more of my days were decent and I had less and less struggle. She spent a lot of time with me and answered a lot of questions and I think put my mind at ease about a lot of things so I’m sure the lower anxiety helped as much as anything. There was still enough struggle that I’ve taken imitrex 6 times in the 2 weeks since seeing the doctor. I really can’t say that it’s helped or done anything, unless it’s been keeping a mega attack away (which I haven’t had in 16 days at this point knock on wood). I’ve had a few mini ones (where I felt real crummy for like 4 hours) but didn’t wake up feeling any worse for the wear the next day. I didn’t have any ocular stuff but had a terrible headache one day so I took one and it didn’t do anything. I went for a walk in the woods the other day and it was vestibularly draining with all the stimuli but I did feel like I could see the trees for the trees as opposed to the trees for a vibrating bunch of trees I had seen 3 weeks ago if that makes sense…so that felt positive but like I said when I got home I was like next time i’m walking shorter (this was like 2 miles in the woods).

Lucky for me I work from home on the computer…and the first few days of the week I really pushed a little too hard and kinda made my symptoms worse I think and I even stopped doing my vestibular exercise after 15 seconds one night because i’m like woah i’m too dizzy…I’ve also been doing verticle head movement exercise which seems to be more sensitive than horizontal.

I don’t have the constant motion feeling it seems like a lot of people on here have. I did have it after the cruise for a bit like I said. I haven’t had the rotational vertigo since that first week or so and a litttttle little bit that 2nd attack time. Most of the times my days go like this: I wake up, half sit up in bed for a minute or two taking it all in (my brain isn’t processing it well yet) everything is kinda like it’s bouncing and it takes longer than normal to gain focus on things. I’ll then get up and move around and within probably 15 minutes feel the baseline of this which I would say is kinda crummy but manageable. I can function on a relatively normal level but I get stressed out easier and I’m half faking it a lot of the time…this fluctuates throughout the day and some days are complete without any real complainable symptoms (yet still am not ‘normal’) and others are tougher and crummy.

I’ve been taking 2mg valium 3x per day most days (sometimes 4-5mg total). I often cut the 2mg pills in half and take them 30 min apart as I’m not a huge fan of that valium surge feeling and this seems to smooth it out.

The doctor wants to try verapamil next if I’m not doing better with the VRT and imitrex. I feel like I’m maybe a bit better than I was 2 weeks ago but maybe not as much as I would have thought/hoped…maybe I just expect things to get better faster? Obviously the VRT makes me dizzy but like she said 15 minutes later I’m usually no worse from it.

I heard verapamil takes a week or two to show positive effect and I’m a little nervous with the side effects so I’ve kind of been trying to avoid that if I can get better without it.

I see so many people have this for years and that makes me a little nervous as to what’s ahead of me…but of course those on here are likely the more afflicted sample as people who get over things often aren’t going to spend as much time on the internet talking about it.

I’m just open to thoughts and suggestions from people. Is my rehab going at about the pace one would expect from somebody with what I’ve described? It sounds like most people with MAV do worse from VRT but I don’t feel like I’m getting worse…? Should I try the Verapamil? I hear a lot about topomax, too.

Thanks so much,
Brian

/edit I forgot to mention that I’ve been on a strict migraine diet for about 3 weeks (from that heal your migraine book by rauch). Kinda funny because my meniere’s diet was filled with migraine triggers…nuts, fruits, yogurt etc. Haha. My mom says I’m being too strict on it. I went 6 weeks w/o caffeine (after 15 years of 100mg or so per day). The whole time I’ve been on the diet i’ve had more headaches than normal oddly. I decided to try a littttle caffeine 4 days ago and have been having 20-40mg per day or so and I’ve had less headache…and I know he says that causes rebound headaches but I’m not seeing it. Other than that I haven’t had a hint of anything else on his list …and still getting symptoms…just a weird thing.

Brian, welcome. Your story is very interesting. Sounds like your cold or your fall could have caused havoc on your vestibular system. Or it could be MAV. I’ve read that a fall can aggravate migraines in someone prone to them. I fell and hit my head quite hard one month before my vertigo started, I think there may be some connection there. Sometimes it takes a while and many doctor visits to get an accurate diagnosis.

The valium that you are taking several times a week could be masking what may really be going on inside your head. Valium has a long half life so even taking it every other day may be helping you feel better on the days you are not taking it.

As far as VRT - it’s been discussed a lot here and the general consensus is that it doesn’t help until you have the MAV under control. Others are more knowledgable than I am about this and will undoubtedly pop in but I think you need to be off the valium for the VRT to work. You say you feel it’s not making you any worse but again, that may be the valium masking what is really going on up there. My doctor suggested I do this but I feel motion sick 24/7 and really don’t want to aggravate that any more.

There was a post just a day or two ago about Imitrix - this has been found to not be of much help for MAVer’s.

Not everyone who gets MAV is afflicted for life so don’t worry about that yet, it’s just that forums such as these seem to attract those who are worse off (ditto for any medical forum). Those who have gotten better tend to leave the forum.

HI Brian
I got a lot of great answers from the book Heal Your Headache, and also a website by a doctor in Chicago, Dr. Timothy Hain. dizziness-and-balance.com/di … index.html. Many people hae gone to see him. If you check out his website you will find a lot of good information about meds etc…Keeping in mind that he is one doctor with his opinions, and there are others with theirs.
Good luck and I hope you get over this in a timely fashion. It’s no picnic!!
Kelley