On Board Ship - Maybe Migraine Related?

[cristiana]

Like a lot of celiacs I have suffered from migraines in the past.   From having bad painful  headaches they then turned into the aura type, (without pain, hooray!) when I had my first child, and in more recent years I have the type that temporarily affect the peripheral vision with blind spots.  Since going gluten free, I have developed a new symptom and this is the feeling of being on board ship when I walk, and also on occasion when I am sitting.  A sensation of swaying, moving back and forth.  It is not with me 24/7.  It hits usually an hour or so after I wake up.   And then comes and goes throughout the day.   Particularly bad when I get stressed.  

 

My doctor does not think I have ataxia - however, while I wait to see some sort of consultant about these symptoms I have been trying to find out what might be behind it all and quite by chance last night I found this very interesting website talking about 'rocking vertigo' and how it often affects migraine sufferers.  It so perfectly describes how I feel and I wondered if there was anyone out there who has ever had anything similar which was later attributed to migraines?  And did you get better? Any coping strategies etc.

 

And also just to say I have followed the advice of ridding my diet of not just gluten but dairy products and soy, in case they might be affecting things.  So far I haven't really found a difference but maybe early days?

 

Open Original Shared Link

 

Thank you.

[dilettantesteph]

I also get the aura without pain migraine symptom, also peripheral vision and blind spots.  It pretty  much went away gluten-free, but does come back if I get a long period of cross contamination issues.  I probably get that rocking thing too, but hadn't really paid much attention to it.  How long have you been gluten-free?  How good are you are avoiding cc?  I think that you might just need to give it more time.  

[cristiana]

I also get the aura without pain migraine symptom, also peripheral vision and blind spots.  It pretty  much went away gluten-free, but does come back if I get a long period of cross contamination issues.  I probably get that rocking thing too, but hadn't really paid much attention to it.  How long have you been gluten-free?  How good are you are avoiding cc?  I think that you might just need to give it more time.  

Hi dilettantesteph.  Thanks so much for your swift reply.  Glad to hear your migraines are so much better.

 

I gave up gluten back in the spring, so about six months now, although strictly speaking there has been accidental glutening about once a month since then, the last one an accidental teaspoon of sauce about six weeks ago.

 

On another post, someone else mentioned it might have been the Green & Black 85% chocolate I was consuming until recently thinking it was gluten-free - it is in the Coeliac UK directory as OK (C.UK. subsequently confirmed it is at levels less than 20ppm), but it does say on the packet it might contain cereals so perhaps even the tiny amounts in that have been enough to cause symptoms...   Suffice to say I no longer eat it!  

 

I just find the whole thing so odd as the 'being on boad ship' was not a symptom until about July, three months after going gluten free. I wonder if life changes can affect the nature of a migraine - I mean, I never had auras until I was expecting my first child.  So perhaps if I do have a new type it was caused by going gluten free?  I hope its temporary....

[dilettantesteph]

I hope it goes away too.  It doesn't sound like much fun.

[Kamma]

Migraine Associated Vertigo.

 

I was diagnosed with it around the same time I was diagnosed with gluten ataxia.  The rocking is horrible isn't it?

 

There's a whole forum dedicated to it at the name mentioned above and you can access some good reading and research there.  Basically, there's two ways of treating it and neither are 100%.  Some choose the medication method, others choose avoiding the designated food triggers (caffeine, salt, yeast, msg, citrus fruits, nitrates, etc.) and others choose a combination of both.

 

For myself, I eschewed the medication part of it and solely avoid the food triggers.

 

The feeling behind it (and there's not much there as it's a relatively new diagnose) is that your brain has been overloaded and can't react to certain triggers any longer. This is the best hypothesis that they are able to come up with.

 

It shares some of the same symptoms as Meneire's Disease and can often be confused with it.  However, Meneire's Disease has the additional symptom of hearing loss of which is missing in MAV.

[cristiana]

Kamma - thank you so much for this info, including the list of trigger foods. It is good to find a fellow sufferer - but my commiserations to you for being a fellow sufferer, it is grim, you are right.  

 

The evening I googled the symptoms and came back with "rocking vertigo" my sister happened also to be on line and found some info on mal de debarquement, which seems similar?  I have a pretty shrewd idea it is one or other - but probably MAV, because although I have done a lot of sailing this year the feeling didn't come after a ferry ride (although I wonder if being in a busy hotel pool full of children counts - it was pretty wavy! It started soon after thinking about it....).  Anyway the thought of more scary tests does not fill me with glee but I feel so much more relaxed now as I really do think the chances of it being anything else is so slim, I fit the symptoms to a tee.  

 

One thing I have noticed, and I don't know if this is true of MAV, is that when I am having a bad day I feel OK driving. Housework is a nightmare those days.  In fact, I should take up taxi driving for a living and get someone else to do the housework paid for with the money I earn!

 

Tell me, when you have an attack, does it make you feel a bit spacey or unreal either during the attack or afterwards?  It isn't light headedness as such but it is a feeling I am sure I got with my auras.   

[Kamma]

I was diagnosed with a couple of labels and went through a year of testing with different specialists before they decided on MAV.  I don't have migraines so when they came up with that, I was like, waaaahhhht??? But they explained to me that you can have migraines without feeling them which seems ass backward to me.  I also have tulio's syndrome which is noise induced vertigo.   

 

The process to healing started for me in going absolutely grain free as I was diagnosed with gluten ataxia and was reacting to minute amounts of gluten.  As my balance and gait started to steady and the seizures started lessening, I tackled the other food triggers to see if it helped with the vertigo and it did.  I'm very strict on it and don't cheat.  I notice that other people on the MAV boards are not as strict and don't have as much of a success.  Adhering to the diet and lifestyle changes is so important and I was so desperate to get better that it gave me great motivation.  

 

Being in motion is actually a lot better than being still with MAV so driving and feeling okay makes sense.

 

My attacks would last for weeks.  It was maddening.  I don't have the spaced out aura but other people on the MAV forum do.  

 

Do you sometimes have pain in the ear and/or ringing with the attacks?

[Kamma]

Here's a list of the food triggers.  Some affect people while others don't.  You have to do an elimination rotation and introduce them back one at a time to see if they are a trigger for you.

 

Cheeses that are aged or ripened (such as Blue cheeses, Cheddar, Gouda, Brie, 

 Parmesan, Romano, Gruyere) 

Alcohol, especially red wine or beer 

Chocolate, cocoa, or carob 

Milk products – sour cream, yogurt, cheesecake, buttermilk 

Asian foods such as miso, tempeh, and foods prepared with soy sauce or 

Monosodium Glutamate (MSG) 

Smoked, processed or cured meats (such as hot dogs, bacon, sausage, bologna, 

salami, ham) 

Pickled foods (such as pickles, sauerkraut, herring, olives) 

Nuts and peanut butter 

Baked items with yeast (yeast doughnuts, raised cakes and hot breads) 

Certain fruits (citrus fruits, bananas, pineapple, avocados, figs) 

Caffeine from coffee, tea or cola drinks

[cristiana]

Kamma, thanks again - all really helpful, thank you too for that detailed list.

 

In answer to your question, I have had ringing ears since a child to a greater or lesser degree.  I remember having flu when I was about eight, lying in bed and being frightened because in the silence the ringing was really loud - we lived in the countryside, v. quiet, no traffic sounds etc. Mercifully I had only just bought a comic with my pocket money  - Mickey Mouse - and in it Pluto and Mickey go camping and they are in the centre of a forest and one of them says, "The silence is so loud it's hurting my ears."  So I stopped being frightened, concluding, that ringing must be what silence sounds like!  

 

I am aware of it more just at the moment but I am not sure if this is because I have become a hypochondriac, I don't know how people avoid becoming one with all the issues we celiacs have had to deal with!  Anyway,  it is both ears.  What I have noticed is when I have my neck massaged by the physio my ears feel very full, actually, it hits me at other times too, although I am not sure I could say what triggers it, but it wears off agian.  I don't know if I have actually lost any hearing - I don't think I have.

 

The other thing I wanted clarification on is when people say they eat no grains, does that include rice?    I am not sure what people mean by grains...   Sorry - guess I'm asking for another list.

 

Anyway you have no idea how encouraged I am to read your story, it gives me a lot of hope.  Thank you!

[Kamma]

That's the beauty of reading of others shared experiences:  you are encouraged that there is a light at the end of the tunnel or it gives you ideas to try. I'm a little shy of saying to people, you have this or that as it could be totally off base but it helps to figure out a possible path to pursue medically.  Check out the symptoms for meneire's disease as well as tinnitus (ear ringing) is a predominant symptom in that while it occurs sporadically in MAV.  If you're able to afford it or have coverage, get a hearing test done.  You can also get vestibular testing done which is pretty straightforward.

 

Interestingly enough, there was a study on people with Meneire's in which they were put on a gluten free diet and 30% of those in the study had a reduction in their symptoms.  

 

Grain free for me means all the grains (gluten containing ones of course but also others such as Teff, Sorghum, Corn, Soy and so on.  Technically they do not contain the gluten protein but are often contaminated in the production process with gluten grains.  There was a recent analysis by the Gluten Free Watchdog on both certified gluten free non-gluten flours and uncertified non-gluten flours.  You can find it here:  Open Original Shared Link

 

Rice is considered a pseudo cereal along with quinoa, amaranth and buckwheat (there are a few other pseudo cereals in that group but I can't think of them at the top of my head.  I eat rice occasionally and it's always from a brand that assured me that they don't use wheat in the rice-wheat rotation planting.  Other people use nut flours like coconut, almond flour and so on but I'm in the place where I"m just happy to eat my veggies, fruit and fish and don't need or want the complex carbohydrates from substitute non-gluten flours.

 

Hope this helps!

[cristiana]

Certainly, a great help.  Thank you.

 

It seems whichever way I look at it I am heading for some more tests!  I should set up camp at the surgery.  I have an unusual surname which I always had to spell when I rang the surgery, now no spelling necessary, in fact, I think they probably would recognize my voice without my needing to give a name!

 

I think this website is marvelous, it has helped so much to learn of people encountering similar problems. Thank you for taking the time to help me, I do appreciate it.  Hopefully it won't be long now before I find out what's behind all of this and I hope it will be nothing scary!