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Newly "self" diagnosed, trying to plot a course of action

Hi all, I had a 2 month bout of “labyrinthitis” in early 2016, mostly remitted w/ prednisone. (Has anyone had labyrinthitis that triggered onset of MAV?) Recurrence in Jan 2018, no prednisone, hasn’t remitted 1.5 years later. Every day I have some combination of disequilibrium, tinnitus, and eye discomfort/stinging, fatigue/malaise/fog. Saw ENT, neurotologist/neuropthalmologist. Clear MRI, normal V-ENG. Most helpful was a Dr. of Physical Therapist, who specialized in vestibular disorders. Some improvement in disequilibrium from vestibular PT. She was very sympathetic and knowledgable, and helped me consider Vestibular Migraine.Only other possibility is Persistent Postural Perceptual Dizziness. Have a lifelong history of migraines that went away at menopause (Ha!) Lately have had all-day or two-day intensification episodes that have been pretty debilitating. Listening to lecture by Dr. Michael Teixido today made me more confident of this diagnosis, and brought me to this forum. Saw my Primary Care Physician today, who is starting me on 10 mg Nortriptyline (sp). Am also trying to think about what dietary trigger changes to consider first. Probably cheese and pepperoni! Looking forward to learning what has helped others, and trying to get some emotional support. No one “gets” how hard it is to function (or not) with this invisible illness you have to work against every freaking hour of every day! Support and ideas welcome. Jenny R.

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Welcome Jenny! Sorry to hear your dizzy history, but glad you found us here. Nortriptyline and Amitriptyline are great first line treatment options. I’m a big fan of parallel treatment options though, so in addition to Amitriptyline I use a Cefaly device and CBD oil. Life’s too short and MAV’s too long to put all effort into drugs alone (-:

I would definitely look into a migraine specific diet and ditching the pepperoni. I continue to eat mostly a migraine diet. How are you doing as far as anxiety/depression? That is a common problem with this condition. Anyways, welcome again, I hope you get some relief with the Nort soon!

Erik

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You’re not alone! I was diagnosed just this week and finding this forum has been a life saver. Welcome to your people!

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Hi, and welcome. Sounds like you have hit the right spot at last.

According to what I‘ve read both on here and elsewhere You and about 50% of the others or more. Either that or some other trauma like childbirth, whiplash, concussion, hitting menopause etc, etc. Seems to happen all the time.

Big trigger. It seems very hormone related. I’ve studied this over the last few years and various patterns emerge. This is one. I personally fall into another. I had childhood sick headaches which then disappeared totally throughout my fertile years only to return as vertigo at menopause.

Sounds like you are on the right track with Nori. Do try the diet as @ander454 suggests. You’ll get emotional support here. We understand. We live with it too. Good Luck with your journey. Helen

I am truly touched and gratified by the fast welcome & kind responses. It has been a lonely and isolating journey, though husband is supportive. Lately on bad days I am tearful and depressed. Not sure if this is a symptom, reaction, or both. Feel so trapped because symptoms are always present, just vary in intemsity. I have occasionally had “almost normal” days but those are the exception. I am fortunate that the disequilibrium has not caused falls or bed ridden, though functioning through it on bad days is such a struggle. Does anybody use HRT (hormone replacement therapy), as I do, and has it helped you to stop (or start) it? It was helpful for me in general for several.years til this started, so am,thinking it may be more stabilizing than disruptive.

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Erik,would also like to hear about your, & others, migraine specific diet. Not sure where to start & dont want to change everything unnecessarily, and may not have enough discipline! Will ditch pepperoni, that’s easy.Thinking of eliminating a few most likely triggers at a time., ust read in a 2019 migraine food guide that chocolate is likely NOT a trigger! Best news in years!

Hi Jenny! This is just how I’m feeling as well …although little by little I’m learning to not get as panicky as I was at the beginning (April and May were my worst months when it came to the anxiety that comes with this condition, it all started in March) but I’m still very much a crying baby about this, I think for me and for a lot of us here it’s more of the fear of the unknown, not knowing when and if this is going to get better and the what if it gets worse part.

I don’t have much advise since I’m fairly new to this but just wanted to validate that what your feeling is just part of this stupid condition

Welcome, look at the welcome page here, there is info from symptoms to diet, and links to different doctor’s opinions about treatment. Hormones are for sure a trigger, I got this postpartum, others here too. And others in menopause. It is a balancing act. I would suggest diet and magnesium as a first step. I read that depression and migraine share some genetic components, so, is common to have depression along side migraine. Try to boost your serotonine, with exercise for example. For a lot of us, a preventive has been a life saver to control symptoms. Try to not fall in despair, depression and anxiety, sometimes we can control those feelings, sometimes we can’t, but try your best. I watched all Downtown Abbey on my worst moments, and was a joyful activity that let me pass the days easier.
Hope you start feeling better soon!

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Like Laura wrote, look at the welcome page, you will find the Heal Your Headache book. That’s generally what I follow.

I had labyrinthitis when I was 7 months pregnant ( weeks of absolute hell) and six months later developed MAV symptoms (diagnosed as Menieres for many years) it was also a very traumatic birth and my child did have some “deficits”, so a very stressful time. Who knows if the symptoms were triggered by the labs, postpartum hormones or the stress (probably a combo). I had had migraines for a few years in my twenties following meningitis and motion sickness as a child so I guess the seeds were always there.

The How to Heal your Headache book mentioned above has a diet in it but it is quite restrictive. It includes restricting some veg and also high Tyramine foods as well as the usual culprits such as cheese and red wine. It is a great book for explaining about the “threshold” needed to tip us over into migraine and has a run down of the preventative meds.

My specialist recommends a much more simplified diet called the Six C’s diet. No caffeine (tea, coffee etc). No Cheeses (or other dairy except goats cheese products) No Chinese food (basically MSG and fermented foods), No Chianti (no alcohol), No Citrus (but a squeeze of lime or lemon in food is okay) No Chocolate. Freshly baked bread and eggs can also be a trigger but packaged bread is fine. The diet also advises regular sleep hours, regular meal times, avoiding stress (ha! ha!) and no undue exertion or exercise.

I’ve read recently (like you) that chocolate doesn’t trigger migraine, it is more that the body is craving sweet food as part of the prodrome (although I usually crave salty dry carbs like plain crisps). I think you just have to work out what your own triggers are. The diets are just lists of the most common ones that patients have reported. Most doctors seem to agree that caffeine is a big trigger.

I would talk to your doctor about HRT as estrogen levels seem to be a big factor in hormonal headaches. It’s great that you’ve started on Nori and can work towards getting some relief.

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oh I so wish!. It triggers me still. Just the smell can do it. But I’ve read that too. Then of course triggers are cumulative so variable anyway.

Hormones certainly huge factor. Unfortunately the jury is still out on whether HRT makes MAV better or worse. You’ll find info on it if you Use the Search facility. Since new and recent research in UK at least HRT is not being used more than five years past menopause any longer according to what I’ve been reading. Helen

Thank you Sputnik and all for your thoughts and diet ideas! Sorry to hear about your difficult pregnancy and birth, what a combo to have to deal with! My wonderful vestibular PT was saying that PPPD is often diagnosed when someone has a set of circumstances like you describe, possibly an inner ear problem at same time as a traumatic emotional issue that somehow results in ongoing dizziness. I think the knowledge base about these interrelated neurological issues (emotion, balance, inner ear, migraine) is so slim, they just don’t know what to call what some of us have and it may all be related! I came to the site straight through the forum and will do as people have suggested and read the welcome posts. Hard to know where to start to identify possible dietary (and other) triggers. Doubt I have the discipline to eliminate many foods at once, but will get the Heal your Headache book

Thanks Diana, nice to know others sympathize. I am finding it difficult to plan social occasions and figure out if I can keep working, or do household tasks I want to, because it’s sort of 2 days pretty good, 2 days very bad, several days mediocre. It is just so wearing. I feel too young to be this debilitated when I don’t have other health problems. Hard to deal because invisible to others too.

Hello and welcome to the MAV club Jenny.
I have had this for a year now and my GP initially diagnosed Labyrinthitus , but when it didn’t improve I took things into my own hands and arranged to see Neuro-otologist Dr Surenthiran in London. He diagnosed Migraine Variant Balance Disorder - another name for MAV , so I am not sure if I ever had labyrinthitus. Now that I know more about it I had lots of signs and symptoms that all was not well - probably had been building up for years - but my main trigger was a Power Hoop session at the Gym. Boy do I regret doing that! Never again.

One year down the line and I am 96% improved - I take Pizotifen and do Dr S 6 C.s diet

  1. Cheese ( + dairy products)
  2. Caffeine (Now on decaff only)
  3. Chinese food (MSG – Soups, crisps, processed meats)
  4. Citrus Fruit and Drinks (+ Pineapple and Banana)
  5. Chianti + Red Wine
  6. Chocolate

Yeast: Marmite and fresh bread

Regular Sleep
Regular meals
No Undue Exertion
AVOID STRESS

Absolutely - that’s why this forum is such a big help - everyone gets it!

Jan

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Hi - somebody may have already said it but there’s a good chance the labyrinthitis was not labyrinthitis - steroids also can prevent migraines.
Many people, me included, are misdiagnosed at first. I had about 4 wrong diagnoses before getting to the right one.
See my Pizotifen Diaries thread on this site if you are interested.

I’m very much better now, 2 years on.

Hope that helps!

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+1

Agree with @gidlabu
I was diagnosed with Vestibular Neuritis and i was put on Prednisone and i felt 100%. It all came back slowly after i stopped the steroids. It took me a great while to find the right med combo. 3 years in and managing the condition with meds.

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Thanks for your response Diana, I’m sorry you are having such a hard time too. We need to look for small ways of improving and getting through the day!

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