Exercise, diet and sleep patterns

Hello everyone. My name is Greg,

I have just been diagnosed with MAV in October 2010. I am 31 and have had the constant imbalance, motion sensativity and the feeling of objects moving when they’re not. The motion sensitivity is there 24/7. The constant imbalance is there about 85% of the time. Some days are better than others, but the feeling never goes away. I’ve never had spinning vertigo or migraine headaches. I went to the ER at the University of Michigan hospital in October (that’s where they gave me the diagnosis). I was there for 3 days and passed every balance test they gave me. But my vision was off, almost like I was cross-eyed and I was really off balance even though I passed the tests. Every other test I took including the MRIs and CAT scans were fine. They started me on Nortriptyline and I was on it for while but I still had the symptoms so I got off it. I was on it for about 8 weeks with no luck. I was at 25 mg and went up to 50 mg but it didn’t seem to matter. Now that I’m drug free at the moment, I wanna try and beat this thing through diet and exercise. Is it possible? Has anyone ever achieved success from that? I know there are loads of other ways I can go, but I’d rather not be on any meds. I don’t think any foods trigger this for me because no matter what I eat or drink my symptoms don’t get any worse or better. But if I eat healthy foods and do cardio will it eventually subside? Right now I eat junk food on a daily basis. I know I shouldn’t but I do. It’s much easier for me right now. But I’m wondering if better health overall will kick this thing right out.

Thanks for reading my post. Any suggestions are certainly welcome.

Hi Greg,

Welcome to the forum. Eating well and being healthy through the use of daily aerobic exercise is usually crucial for people to help knock this on the head. Even if you were taking nortriptyline and it was effective in reducing symptoms for you, it may not have been something you registered because the experts will tell you that if you don’t clear out the triggers, a drug may be rendered completely ineffective. For example, the use of caffeine can keep you in a chronic state.

Check out the MAV Survival Guide and follow those tips in order. If this is migraine, you may very well be able to stop the symptoms via lifestyle changes alone. Burd has had success with this. For some 40% of people it is enough. For the others a med is required if symptoms do not resolve. And usually the med is a supplement to the migraine lifestyle and not a substitute.

Good luck … Scott 8)

I thought that I would add that a strict sleep routine helps as well. This includes keeping your weekday sleep schedule during the weekend.

What’s your thinking about sleeping pills, Brian? I tend to take them if I’ve got to be decently slept for something important in the morning, but otherwise I try to avoid them; and I do not reliably have a regular sleep pattern without the pill. I have no idea whether they’re considered anathema, like analgesics, but if not, I might overcome my reluctance to rely on them.

David,

I can’t take most sleeping pills because any med with any type of drowsiness as a side effect will put me to sleep. I’ll put it this way, meclazine works as a 12 to 36 hour sleep aid. I do take valium from time to time if I am not sleepy at bedtime. I’ve read about other people using benadril to help maintain sleep cycle.

I take naps most days, and sometimes the nap may get a little long and keep me up that night. I’ve found that my balance is a mess the next day if I don’t do something to help me get to sleep at a near normal time. I don’t know what the doctors take on taking medication of any type to help with sleep regarding MAV and migraines. I do know that lack of sleep, or an erratic sleep cycle is considered a form of stress on the body.

I figured out how important a consistent sleep schedule is for me thanks to daylight savings. I have always struggled with adjusting to it for about a month afterwards, both spring and fall. Then I found out that it is common for people with problems with migraines in general to have problems adjusting their sleep cycle in general.

Thanks a lot Scott and Brian. I didn’t know that about the caffeine. I drink coke on a daily basis and I sleep in on Saturday’s and Sunday’s. I will be putting together a healthy diet with exercise starting after Christmas. I will probably use the same diet and exercise plan I was on just before my son was born 3 years ago. 3 months before he was born I quit drinking alcohol on the weekends, dumped the junkfood and went to the gym 6 days a week. Mostly cardio. I love jogging. The reason I plan on using the same program is because at that point in my life, during those 3 months, I felt incredibly healthy and confident, never had a spell of dizziness in my whole life then. I would love to get back to that feeling again. Now that I hear from you guys that there may be some hope in doing that with exercise, diet and sleep pattern, that gives me great motivation on starting that back up again. I’m getting ready in my mind for the big change. I will keep this post updated during my try. Thanks again.

Greg

I know caffeine is a real problem for most folks with migraine. We haven’t made the kid give it up yet, though. His neurologist wanted a regular sleep cycle to be the first lifestyle change – and you can only make so many changes at the same time and make them stick.

We started out having him be in bed by a quarter before 12, and up at 8:30. That was giving him 8 1/2 hours of sleep a night – but now that he’s getting that regularly, it’s clear that it’s not enough. Dh had a medical appointment on Thursday morning, so wasn’t here to wake the kid at 8:30 – he didn’t wake up on his own until 11! So now that he’s had that catch-up, we’re moving his bedtime back by an hour, keeping the wakeup time the same.

And, yeah, that’s 7 days a week. No sleeping in on the weekend. No staying up late for social things.

Once we’ve got this in place, I’m not sure what the next lifestyle management thing will be.

Is anyone taking B vitamins as part of their care regimen? How much difference do you see?

Mamabear

I take B2 200 to 400 mg a day. Also added in a time-release B complex for the nervous system. I think it helps… I’ve noticed the biggest difference on the B2. Yes, the caffeine can be huge, Mamabear. And, I think one of more aggravating components may be the chemicals in the diet coke, not just the caffeine. The large daily intake of caffeine continues the cycle of constant nervous system/brain over-stimulation which is really detrimental to MAV or migraine much less inner ear disorders, high blood pressure, etc. Also take in consideration that the caffeine can cause spikes in blood sugar that can also set off or continue MAV as well. It’s all so complicated to pinpoint exactly what triggers are the worst. Might try interspersing decaf diet coke for awhile since abruptly going cold turkey on the caffeine will be as unpleasant as whatever he’s been struggling with. Nice job of approaching one workable challenge at a time - the sleep-wake cycle is huge!
Gail

The neurologist did tell him no artificial sweeteners, at the very first appointment. Which wasn’t a change, because we’ve never done artificial sweeteners anyway. But that means diet Coke isn’t an option for him.

Her philosophy is like ours – there’s only so much a kid can take on at one time. So, sleep was first. And the vestibular rehabilitation therapy – he has to do those exercises twice a day. They don’t seem to be making a difference with the MAV, but they do seem to be giving him more confidence in his ability to stand and walk, so that’s good. Even if he does walk like a drunken sailor most of the time!

If the neuro tells him to cut out the caffeine, we will give him the choice of slowly switching over to caffeine-free Coke, or slowly giving up Coke completely. But, yeah, we won’t have him do it cold turkey – unless that’s what he wants to do. We try to give him as much control with this as we can, because so much feels so out of control for him.

I’ll put B2/B complex on the list of questions for the appointment on Tuesday.

Thanks!
Mamabear

You are so right about the control issue. It’s horrible knowing that you are not in control of your body. Glad he’s drinking regular Coke and not the diet junk if you need to choose between them. Good he to the MRI out of the way as well. It’s always good to have done that and know the results and not have to wonder. Your neuro sounds great. Every step is progress.
Gail

Migraine can cause all kinds of symptoms, with or without headaches, and if with headaches, that can be all kinds of sensations and levels of pain affecting one side or both. Some don’t get any headaches at all. When it affects the inner ear, our center of balance, it can often cause dizziness, vertigo attacks (freakin’ hell on earth), tinnitus (constant noises in the ear, 24/7), ear fullness and pressure, and some hearing loss. Sometimes hearing and/or vision can become extremely sensitive. It can be different each time depending on what is tripping it. Most people think migraine means that one-sided nasty headache. That is only one very tiny slice of the pie called migraine.

It can produce imbalance, unsteadiness on my feet, a kind of delayed or accelerated response to personal movement, the feeling of the continuation of movement once I stop moving, as if I am standing in a boat. When bad, I may walk like a drunk or worse, be forced to crawl or hold onto things to get where I need to go. Attacks can last seconds, minutes, hours, days and even months depending on the amount of triggers activated.

And mine is triggered by so many things… fragrances of all kinds (personal care items, perfumed anything, room deodorizers, scented fabric softeners, etc), chemical smells and mists of all kinds (cleaners, fresh gas fumes, woodworking products, paints, oil-based and solvent-based products, etc), new materials that are outgassing odors (such as new leather, vinyl, and plastics, building materials, electronics, etc), dust, dustmites, animal dander and fur, smoke of any kind, pollens, pretty much anything that is in the air that isn’t air. And it isn’t just odors either, but outgassing from items that may not have an odor at all (formaldehyde products, welding gasses on husband’s clothing, etc) Bright or strobing lights can set if off, or repetitive patterns of movement, like watching a train pass in front of me or a string of traffic or windshield wipers or moving glare of headlights.

Your descriptions sounds like classic migraine activity. Foods have not been my significant triggers as my worst triggers are the ones listed above. There are a few food items I must avoid (dairy is one), some I can have in smaller measures when I am feeling better, the worst offenders for me are food additives (nitritres, nitrates, sulfur/sulphur, sulfites, msg and its relatives…check this link out… truthinlabeling.org/hiddensources.html

I am always having to be aware of my surroundings and atmosphere, my home must be clean and free of offenders, and I can read any food label in about 5 seconds flat. The pay off is that I got well and have successfully managed my migraine symptoms to where most of the time I feel fairly normal, without using any medication. I have set backs and rough spells and sometimes low grade symptoms for even a couple of months or more, but it is minimal for the most part.

I highly recommend these books…
Heal Your Headache, by David Buchholz
The Migraine Brain, by Carolyn Bernstein

They explain what migraine really does and how to manage on your own and when to know to seek out help or prescriptions.

Thank you very much Burd. I hope I can have the success you have.

Hi Burd

How did you go about working out all your triggers? As my dizziness is pretty constant at the moment, I find it really difficult to identify what my triggers could be, particularly if it’s linked to the environment I’m in or smells etc rather than foods I’ve eaten. So far I know tiredness is a trigger for me and I’m planning to start a migraine diary to look for other. I was just intrigued about how you managed to narrow your list of triggers down to such a precise list. Any advice you or others have would be great.

Jennifer

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Hi Burd

How did you go about working out all your triggers? As my dizziness is pretty constant at the moment, I find it really difficult to identify what my triggers could be, particularly if it’s linked to the environment I’m in or smells etc rather than foods I’ve eaten. So far I know tiredness is a trigger for me and I’m planning to start a migraine diary to look for other. I was just intrigued about how you managed to narrow your list of triggers down to such a precise list. Any advice you or others have would be great.

Jennifer

— End quote

Hi Jennifer.
It took time. I had already had a bad migraine experience in my 20’s which set the pattern for future recognition of symptoms. My doctor at that time told me to abstain from all dairy foods and components and within a month the symptoms went away. I was good for another 15+ years, then the symptoms came on again. Two years of dizziness before the tinnitus, pressure, hearing loss and vertigo. I thought it was a food thing again. My experiments didn’t prove anything there. But I began to notice patterns. Symptoms flared when exposed to dust (like when mowing the lawn or cleaning out the garage or someone’s dusty storage), when exposed to strong fragrances like perfumes, incense, room deodorizers or sitting in a friend’s new car, smoke, a building with new carpet or paint or construction, or someone’s dusty home, things like that. I always felt worse at night, smothered in my bedding. I am a very clean person but learned about dustmites, which would explain why I felt worse at night. Read about dustmites, It is quite an education.

I had to get radical, because I was getting desperately sicker and sicker, it was horrible. I eventually went deaf in my right ear, with transient symptoms in the left, besides being so sick all the time. So I dustmite-proofed the bedroom (labor intensive), eliminated fragrances and chemical smells from my home and laundry, we pulled up all our carpets and put down laminate floors, got rid of fabric furniture and got leather, and I maintain it all constantly. I started to get better. Once that happened, it was progressive and over the years I have been able to identify and pinpoint triggers to extreme specifics, always from being very observant. The reactions can be different for the triggers too. My understanding of food issues and food additives came a few years later when my body became increasingly intolerant to things I once could have. After that revelation, and taking care of those issues, then I began to do really well, better than ever. I am 6 years into this, and still learning. Our bodies are always changing.

Keeping it brief as my story is elsewhere on the forum. Just wanted to second what some others have said. I was diagnosed with MAV after suffering a long list of classic symptoms that left me so unable to function normally that I was almost housebound. Eventually with help from a neurologist I’m now fully functioning most of the time on a low dose of amitriptyline and a very rigid sleeping pattern - meaning in bed by 9pm, asleep by 10pm and thanks to the Ami, sleeping through to 6.30am. Every time I change from this pattern, by having more sleep or less sleep or even just a different sleeping ‘time slot’, my symptoms start to come back straight away the following day. Weird but true. I’ve also been eating a diet based on fresh unprocessed food - fruit, veg, fish, pulses type stuff. I have no idea if this also helps as I’ve been eating this way since seeing the neurologist and haven’t deviated from it, but diet could be a contributing factor to my wellness; there seems to be a fair amount of anecdotal evidence for it. A few months ago I started to incorporate some brisk walking into each day - half an hour/an hour a day - after a couple of weeks I noticed that brisk and brief worked really well in keeping ‘the head fog’ at bay in the evening. When I upped the walking to a more physical jogging level, I felt as though I was getting fitter but it gave me headaches. Haven’t a clue why, it could just be that I’m not very fit and was overdoing it? Anyway, good luck with finding your way through all this MAV stuff; as if life isn’t difficult enough!!

When you say, “low dose of amitriptyline” how much is the low dose?

Christine

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When you say, “low dose of amitriptyline” how much is the low dose?

Christine

— End quote

25 mg each evening.