First, thanks everyone for this group and your input! I’ve been lurking here since November, when my (2nd of 3) ENT first said I had a “classic” case of either Meniere’s or chronic vestibular migraine (which we’ve now narrowed to most likely vestibular migraine). I’ve been thrilled with the amount of helpful information I’ve seen here!!
I first started having issues in early 2010, a week after I got over a lousy head cold. They lasted for 4 months, were never accurately diagnosed and eventually got blamed on allergies and corticosteroid use, as a month after I stopped the meds, the problem gradually seemed to go away. Then last February (it’s been a long year), I rolled over in bed one morning and the world began to spin. Things haven’t been the same since… I had issues (the same as in 2010) on and off (mostly on) until June. Then everything got worse and became chronic. I have constant low-grade vertigo (not spinning, thankfully, just “weird” head - vision and balance issues. I have had ear pressure (1 ear) and ringing (both) since February. And, like many of you, a whole host of other issues, which at first glance appear unrelated (fatigue, occasional tingling in the feet, IBS, fuzzy thinking, seeing spots, light sensitivity, sound sensitivity, etc. etc…) And, of course, it’s worse with lack of sleep, stress, hormonal changes – I’m 42, so that’s a big one I think, and food – not eating the right amount or the right ratio of carbs to proteins, especially in the morning. So far, in addition to a zillion blood tests for various things, I’ve had a CT scan, an MRI, MRA, and hearing tests, and everything’s come back normal. My neurologist put me on 240 mg of Verapamil about a month ago, I’ve been trying the Buccholtz diet since the week before Thanksgiving (made for a fun couple of holidays…), and am lined up for vestibular testing on the 6th of Feb.
So, my questions are: (Hopefully you’re not hating me, given the length already…
How bad is vestibular testing, really? (I admit, I’m paranoid. I spend every day trying to avoid making things worse – being single, out of leave time, and someone with a house payment, I do have to go to work – and I’m worried they’re really going to mess up my head so I can’t drive again.)
About the Verapamil… I was feeling a smidge better (until the hormones kicked in last week) and was going to ask my neurologist if I could up the dosage and switch to the extended release, but I’m having issues with my feet getting hot and red (and sometimes getting swollen ankles). Is that likely to pass, or no? (It’s at the point where, aside from being rather annoying, it’s causing serious sleep issues, as it’s worse at night in bed for some reason…) I hate to give up the V completely as it’s fixed the IBS issue and my (unrelated) arrhythmia (had it for years – “harmless” PVCs according to the cardiologist) and it did seem to be working some for the vertigo and fuzzy head (just not enough at this dosage).
And, as for the dietary stuff… for the life of me, I can’t figure out what’s making things worse and what’s not. I’ve tried keeping up with what I eat when, but still don’t see a pattern. Plus, there are so many potential triggers that are on other folks’ lists that aren’t on the Buccholz list I’m having a hard time trying to figure out what to eat and what not to. And since this all began I’ve had a really hard time with feeling hypo(er?)glycemic (even though my blood sugar tests at normal) and having my head completely fuzz over if I don’t eat the right ratio at the right time of the right foods. But after trying to figure it out since June, I still don’t know the magic solution in terms of what I can safely eat without feeling worse… What do you all recommend in terms of food/eating/finding triggers? (I’m so frustrated with trying to figure out the dietary mystery, I’m about ready to chuck the whole diet! Though it could be because someone here just heated up some bacon…
Hi erika
Can relate so well to your symptoms and journey in getting a diagnosis. Mine began in Nov 2010 after a short (6 wk) eipisode the previous year. All the symptoms you mention are relevant with MAV. Vestibular testing can be challenging but didn’t make me any worse than I already was and worth knowing that ears were OK.
Don’t stress too much about the diet thing - have you read Scott’s MAV Survival guide - there is a list there of foods to avoid which is useful and worth sticking to. Plus foods you may have already found don’t agree with you (wheat, dairy, sugar are mine). It’s a bugger to give up all those foods I love -chocolate, cheese, nuts etc. etc. Once you are on the right track you can try small amounts & see whether it affects you. CAFFEINE seems to be no 1 trigger for me so I have sworn off that.
Other than that eat fresh food and a low GI diet and concentrate on getting the right meds which I found are the key component to making life worth living again!
You’re the first person I’ve seen mention the burning feet which started for me when I began a low dose of Nori. Like you, worse at night & had trouble getting to sleep. Changed from Nori to Prothiaden but burning feet still same. Have had all the neuro tests - diabetes, nerve reactions and a raft of blood tests which all came back negative. The specialist doesn’t think it caused by meds but is not sure what is causing it! I started to get Psoriasis on the soles of my feet at the same time but, again, my dermatologist says it’s not a usual reaction to Psoriasis. So I have my routine of soaking my feet before bed in cool water. Also put a cool pack in bed for feet to rest on! We are having 40 degree heat at the moment so it’s quite a good way to cool down! I take 1/2 ativan (lorazepam) to get to sleep and with my Prothiaden up to 100mg migraines are a lot less frequent and my balance is better. Can’t ask for more? If your neuro has an answer I’d love to know!
Welcome to the forum - the best support & info to help you on your way to getting better.
Barb
Re the vestibular testing - I presume you mean the stuff they do with your ears to check the problem isn’t coming from there? I , too, am paranoid (more than you it would seem as I am always terrified of new drugs - I’m cutting a 40mg verapemil tablet in half :P), but the vestibular tests are easy peasy.
I was worried about the caloric test thingo, where they put warm water into your ear and it induces dizziness, but trust me, it feel like "normal’ dizziness, as in the type you would ahve felt as a kid when spinning around, as opposed to MAV “i feel like I’m dying” dizziness.
None of the other tests are anything to worry about, seriously. They did tell me not to drive afterwards as I may feel dizzy, but I didn’t at all. Mind you, that was 2 years ago when I still had weeks at a time of feeling ok.
So basically, it’s absoultely nothing to fear, no pins or drugs or needles or scary equipment at all. Just organise to have someone take you home afterwards in case you are dizzy.
Barb – Thanks for the reassurance about the vestibular testing - I know I’ll be glad I did it, in the long run. As for the diet, who knows… I’m so frustrated, I’ve been blowing it left and right this week. Guess I need to get back on track. I think I’ll try Scott’s list you mentioned, as it’s a bit more do-able than the Buccholz one. (The biggest problem is that I’m a processed food junkie - hot dogs, canned soup, frozen breaded chicken fingers, turkey deli meat sandwiches, that kind of thing - because they’re easy to fix for one person without having a ton of leftovers. Guess I’ll have to just deal with it and somehow find the time, energy, and creativity to cook real food… 10 weeks into the MAV diet and I’d kill to eat “normal” foods.) About the feet thing, I was having some tingling on and off when this all started (both times), but that’s been gone since I started the Verapamil. And even though the neurologist didn’t think the hot/red/swollen feet is because of the v, if you Google “verapamil” and “erythermalgia” together you’ll find there is a connection between them. Oh, and I like the cool pack in bed idea, but the problem is, usually when I go to bed, my feet are like ice. Then I wake up a couple hours later and they’re on fire. I don’t doubt that it’s partly hormonal, but it’s really ramped up since starting the verapamil. I have now compromised by flipping up the covers at the foot of the bed. Pull my feet up when they’re cold, stick ‘em out when they’re hot.
Jemma – I totally agree about the drug paranoia. Fortunately my neurologist is, too. When he first prescribed the Verapamil last month, he said that for my size I should be on 240 mg a day, but that he liked to start small and work up, so he had me cut the pills in half for the first week. Honestly I felt fewer side-effects after I kicked it up to the full dosage. Except for the weird feet thing. And I normally have lousy side-effects from anything I take. (Can’t even take meclizine – makes the vertigo worse – or diazepam – makes me jittery and keeps me awake at night…) Thanks, also, for the testing reassurances. I really was worried about the “I feel like I’m dying” dizzies – was actually thinking about canceling the appointment. Guess I’ll suck it up and go. They did say to have someone who can drive me home – that’s what was really flipping me out. Took me about 30 minutes to get back to my usual level of yuckiness after 40 minutes of laying down flat with my head tipped slightly back for my MRI a few weeks ago – was practically grabbing the walls on the way out. And that test doesn’t intentionally make your vertigo worse. Hopefully this won’t leave me in any worse shape than the MRI.
Re the testing. I’ll tell you straight that it can go either way. Some walk out afterwards and have dinner with friends while others (like me) are trashed by it for days. Now, when I had it done I was in a really acute stage of this and just sneezing made me feel worse. I had no meds going on, was an anxious wreck and so I was totally naked going into that caloric test. What I would suggest is to make sure you can chill afterwards and definitely have some valium on hand. If I had only known that in 2003 it would have been an easier test to ride out. It might also be good to have a friend meet you afterwards for support and even a laugh.
Note that inducing vertigo by way of the caloric can trigger a migraine headache or migraine symptoms (as seen in the science literature). So that’s also a possibility and you may need a pain killer if that happens to be an issue for you. Of course you may just walk out and be fine.
Re foods. I find the B diet a bit OTT to be honest. If I were you I’d start with eliminating the big main triggers as outlined in the Guide. So no caffeine, chocolate, nuts, deli foods, pre-mixed sauces or powdered ones which are full of either MSG, sulphites or nitrites, and no alcohol. It’s a depressing list I know but it’s a start and may help you work it out. Be aware that it may be a combination of items too – e.g. bad sleep, one beer and a chunk of dark chocolate the next day. BOOM.
Not sure about the weird Verapamil symptoms but I’m sure others here will no more about that than me as I only lasted about a week on it.
David – sounds delish! (Though I’m a mayo addict, myself…)
Scott – thanks for all the insight! I may bring the valium, though last time I tried it, it didn’t seem to help at all, and just gave me the jitters - made my heart race and kept me up all night. (Apparently it works like Benadryl and makes some folks sleepy and some get hyped up.) Willing to give it a try again if I get desperate, though! As for the headaches, I don’t get the killer ones – just “low-grade” which would be livable, and preferable to messing up the vertigo any more than it already is. Oi.
So, as much as I thought the dietary stuff wasn’t really much of an issue, I have to say, I felt halfway decent on Saturday, binged on decaf coffee and Cheetos (not at the same time all weekend and found I felt horrible on Monday. Oops. Guess the foods are having more of an issue than I realized. Great. Anyhow, back to my usually yucky level now. S’pose I’ll be passing on the bacon a while longer… Going to harass the neurologist for a new (not sure which one yet) med next week after the testing. Would really like to fix the weird head stuff, and the Verapamil’s not helping that part of the issue, it seems.
oh the vestibular testing… i agree with Scott that it can go either way. It didn’t bother me too much untill they started blowing air in my ears. But I was back to norm after an hour or two of sitting in the waiting room, and fully recovered by the end of the day (I went straight back to work from that).
Tanya - thanks for sharing… I’m starting to flip out about the test. I’m sooo worried it’s going to make me a ton worse. (I’m barely making it to work as it is, these days…)
Oh sorry! But the person who gave me the test said I was the only one who ever had to “sit it out” in the end. And I only had to do that because of nausea, not due to dizziness. There are very good chances that it won’t bother you at all!
If your neuro has an answer I’d love to know!