So, my explanation of what I’ve been dealing with can be found in my previous posts from July 13-14. It’s been about a month on the Topamax and I’m currently at 75mg. I’ve taken the dosage increases a little more slowly than 25mg/week as the side effects were a bit too intense for me, but in a day, I’ll be increasing to the max 100mg dosage that the doctor wanted me to get to. Some days at work, I feel less dizzy when I’m running around a lot, but today just felt completely awful. I still notice the extreme dizziness when I stop moving after moving around a lot at a quick pace. The vertigo doesn’t come in waves suddenly, it’s just there from the moment I start exerting myself until I sleep it off whenever I get the chance. It gets better, it seems, as I wake up more and my body starts to get used to the day, but I notice that it’s worse closer to my menstrual cycle (which is about a week late now). I’m not on birth control and have never had a very regular cycle. I’m not currently sexually active, nor do I engage in sex with men so there is no chance of pregnancy. I’m almost wondering if this is maybe some kind of hormonal imbalance that strikes during ovulation and close to menstruation? I just can’t help but notice the differences between my symptoms and most other people’s who have vertigo of any sort. I know vertigo comes in all different shapes and sizes, but I’m starting to wonder if I’m pumping my body with meds that I don’t need for something that I never had to begin with. Again, my vertigo is most intense, not while I’m moving around a lot or staying still randomly, but when I have been physically exerting myself and moving around at my job (serving, food running, making coffee, etc.) and then come to a complete stop. It’s when I stop that everything seems to keep moving and I feel as though I am going to pass out or need to slightly brace/ground myself and focus my vision.
P.S. For those who haven’t read previous posts, I have been to ENT Doctor and had all of the tests run and they have confirmed that my inner ears and hearing are perfectly normal. No balance problems or hearing loss.
I’m a sceptic when it comes to this diagnosis. I believe I have variable BPPV with migraine and possibly some hydrops. I think this must be very common. Once you have the migraine under control with meds and/or supplements you are left with the BPPV (and maybe in my case the dreaded hydrops). I take Amitriptyline which is a vestibular suppressant so can make you feel less dizzy, but doesnt resolve the BPPV, only time will do that (or if you are lucky some special exercises like the Epley, but not everyone’s BPPV is so straightforward)
That’s the thing is that the doctors have ruled out BPPV in my case. I just don’t understand, since it seems movement related
I had had one headache style migraine in my life until my ear started playing up. BPPV is the most common form of vertigo and it makes sense. Many now believe that hydrops and even Ménière’s are related complications of it. That makes sense to me too. Let’s face it, loose stones in the ear are easy to get and they can cause chaos. I do not believe its at all viral in my case. Others may have other things going on but I believe what I have may be quite common.
I just don’t understand why I can’t seem to find anyone who has had a similar experience on these forums in which their vertigo seems to strike every time they are moving around a lot and then cease movement rather than the random “episodes” people with vertigo of any sort or source are plagued with. It’s weird really it’s like my body can’t figure out that it has stopped moving when it has or something.
I think the really frustrating thing is the amount of dogma in the medical community and the lack of truly definitive tests. Do you get discrete ‘attacks’?
I would say so, in the sense that I’m able at this point to beat through it, have never fallen over or lost balance, and have never gotten physically ill from it. That’s why it’s so confusing to me too I suppose.
I don’t have hearing loss - I do have balance problems (my nerve is damaged in my right ear). But I am similar to you in that I get dizzier when movement stops. If I’m in a car - the more it stops, the dizzier I get. When walking on a treadmill, I’m ok, until they stop the treadmill and I go to get off. I’m dizzy every day to some degree.
I’m backwards from “most people” according to my physical therapist - I’m not as dizzy in the morning, but the longer I am awake, the dizzier I become. They always used to schedule my appointments in the afternoon b/c most patients are better in the afternoon, but I couldn’t do that much before getting “too” dizzy. Then they were booked one afternoon and scheduled me in the morning and couldn’t believe the difference when I walked in that morning (even though they had looked at my logs and had seen that I wasn’t as dizzy in the mornings - I guess it takes seeing it to believe). After that - they scheduled all my appointments in the morning b/c they could do more exercises with me.
When I stop after walking or moving - I try to make sure I’m by a wall, table, person (that I know, not a stranger) so that I can touch something to make sure I don’t fall over - just another point of input for my body. I always when walking or standing have just gotten in the habit of reaching out and touching my husband just as another for of input.
I can’t tell you about the hormone thing, as I experience dizziness every day to some degree and I had a hysterectomy 12 years ago… I could go back and check my logs to see if some weeks are worse than others and see if there was a trigger that corresponded - sound is a huge trigger for me, but when I was keeping a journal, I tried to make note… but my dishwasher makes me dizzy and that gets run every day…
The past week has not been good as far as brain fog/dizziness, so if this is a little scatterbrained, sorry 