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Diana's MAV diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: early 2016
Number & duration of acute phase(s): sporadic/only when staying still after a busy day/lasted for 2 months
Any suspicious physical event/trauma leading up to dizziness: none
Start of chronic phase: December 2018
Age at chronic onset: 30
Started medication:Effexor XR nortriptyline, zonegran
Stopped medication: nortriptyline, zonegran (started Nort after stopping it as well)
Number & type of consultants seen to date: PCP, ENT, Neurologist, Neuro-otologist
Diagnoses received (one I’m “running with” first): MAV, Menieres variation
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear: none
Persistent or intermittent tinnitus and character: persistent ringing both ears, intermittent pulsating mostly on left
Other chronic conditions I’m suffering from: PCOS, Endometriosis
Medication I’m taking for other conditions:
Any personal history of migraines: onset migraines 2014
Any family history of migraines: mother, father
Any history of ear problems: once was told I have Eustachian tube dysfunction
How did friends, family, and doctors react to your symptoms?: some are supportive, others not so much

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: swaying, rocking, migraine headaches
My Worse Day Now: rocking gets violent, I get too anxious

Rough History

-i was diagnosed with migraines with no aura in 2014, they are the typical “pain on one side of head that get better with imitrex” type of migraines and usually only get them during or right before my period.
-early 2016 I started having this weird swaying feeling only when I stayed too still, went to the dr, all test came back normal and by the time my dr thought of sending me to a specialist the feeling has gone away so nothing wa done.
-August 2017 started having ringing in my ears sometimes accompanied with clogged feeling, was prescribed nasal allergy spray but that didn’t do much
-December 2017 the swaying, rocking feeling came back and was sent to the ent, as soon as I said I had migraines she got fixed on the fact that it was my migraines causing it and told me to find a neurologist, in the mean time sent me to vestibular rehabilitation which helped and the swaying feeling went away
-February 2018 stablished care with a neurologist who ordered MRI which came back clear of any abnormalities, he didn’t seem too concerned about my migraines since they seemed to be hormonal but still started me on prevention medicine (trokendi) …it gave me bad acid reflux so I stopped it
-rest of 2018 went normal when it came to migraines and balance problems but was diagnosed with severe endometriosis after emergency surgery (telling this cause is kinda relevant) and in July 2018 I got the mirena iud, after the mirena I started getting more migraines but they assured me it was my body getting used to it and since it started working so well for the endometriosis issues I’ve stuck with it.
-December 2018 the swaying rocking sensation comes back, this time it’s not only when I stay still, I can feel constantly through the day no matter what I’m doing and the only thing that seems to help is driving (weird) …I go back to the ent and she order a VNG, hearing test and more vestibular therapy.
The hearing test showed no loss, The VNG results were very confusing or at least the way that she explained them to me was, she said I showed problems in two variations (I swear this is how she explained it) and that one of them was mostly because of my migraines and the other variation was because of inner ear problems, my mistake was getting scared and not asking for clarification.

Start of Journal

July 13, 2019
I decided to start my personal diary to have a single post where to post whenever something happens instead of having multiple posts all over the site
I decided to go with my gut feeling and started nortriptyline for a second time (July 10th 2019), last night was my 3rd dose and I’m having a hard time, I was already going through a rough flare up but Nort definitely increases everything way more. im trying not to panic more than I already am and stick to it but it’s just so hard

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Our medical history is really similar. Don’t worry about variances on VNG. We all have them to some extent and they are rarely diagnostic. Get the migraine under control and the ear and trigeminal issues usually calm down too. The trick is finding a neurologist who doesn’t just treat the headaches. Most of them don’t understand vestibular issues.

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Thank you for your write up. Hope the nort works out for you. I had no side effects or effects whatsoever on small dosage and still don’t at 70 mg- maybe you having side effects at a low dosage means you’ll find it having positive effects soon too and you won’t need so high. To keep side effects limited move up very slowly - my neurologist said 10 mg every four weeks or so

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I am also thankful for your write-up. We all all different, but when i tried a medication a second time it just the opposite of the first time which was successful. Nortriplymine was working and stopped. I wish you much success.

Today marks a week since going back on nort …besides increased dizziness I’ve experienced insomnia with it so last night I decided to take it at 5pm to see how that would go …something very strange happened and I’m not sure if it’s the pill or not, I know some here seem to think that 10mg is too low of a dosage to feel that much increased in symptoms but I do think it is possible. I’ve definitely become more sensitive to medications, for example imitrex that didn’t give me any weird side effects for the past 4 years now gives me horrible ones.

Anyway I went to bed at 10pm but didn’t feel sleepy at all so i Just tossed and tossed, I got up to the bathroom and that’s when I realized how dizzy I was, it’s like my eyes and brain were working in slow motion, came back to bed and as soon as I closed my eyes to try to sleep the room started spinning and my eyes would go crazy, moving like trying to catch up with the spinning, scariest thing so far, it would go away as soon as I opened my eyes, I eventually felt asleep but kept waking up to the sensation of bed moving in waves. I’m still in bed because I’m so scared to get up, the feeling of my eyes and head still working in slow motion is still there

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Oh dear. That sounds like you’ve just discovered true rotary vertigo. Horrid sensation. Know it only too well. Sorry to hear that. Do take care negotiating the bathroom etc. Helen

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My biggest fear!!! Is it common to experience it only with eyes closed? I mean I’m not complaining, Thats better than experiencing the other way around (knocking on wood) …I finally got out of bed and I’m baseline ok aka I think I can function at least for the bare minimum …feeling disequilibrium a little more than usual though

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Ah didn’t notice that when I replied as my broadband is really playing up and I typed my reply four times and it wouldn’t upload, froze so log out and back in etc, so missed that bit. Strange far more usual for it to occur on opening eyes rather than closing them. I always found it would stop if I lay perfectly still with my eyes closed. In fact I sat through many vertigo attacks only opening my eyes if I needed to stand up. However, we’ve had other people on here who say they experience vertigo only when they try to sleep and feel the bed is moving in waves so I doubt it’s uncommon. We are all different it seems. As it all just brain confusion I don’t suppose it matters which way really it happens. Of course you will have increased balance symptoms because the vertigo occurring is an indication that something has further interrupted your vestibular system. Helen

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So sorry to hear that too…i can remember feeling just rotton on Nort & Ami…i couldnt tolerate them at all even at 10 mg. I hope you have more stamina than me!!! Let us know how you get on
Jo x

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One of the worst feelings ever! I had it bad like this too. I would look forward all day to the time that I could lay down and rest, but fear laying down and resting for the vertigo would come. As Helen mentioned, I had the true rotary vertigo while lying in bed but also times that the bed would literally feel like it was bucking underneath me. Most commonly through the past 6 months of being treated with meds though is the bed rocking sensation. It can feel like it’s rocking side to side or it can feel like it’s rocking head to toe! All horrible but the rotary vertigo is the most terrifying.
Do you use only one pillow or many? During my worst times I used 2 pillows plus a wedge pillow, basically I was nearly a 90 degree angle in bed which helped tremendously. How or why… I could not tell you!

I do only use 1 pillow, hateeee sleeping with more than 1, sometimes even sleep without pillows at all lol. But I’ll try to use more, if that helps so be it!!! Thank you

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Hang in there, Babe.

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Honest, it was the one thing that I did for about 14 months straight. After a few months into medication I removed one pillow and the neck pillow, which I also used to hold me completely still. Now just one VERY lofty / supportive pillow and one wedge.

Here’s the wedge I use: it’s 6 1/2” high and then a pillow on top. I think I remember James @turnitaround saying he used multiple pillows also. I’ll never go back now. Try it out, can’t hurt anything! Hope tonight is so much better!

https://www.amazon.com/gp/product/B00EN6KKZW/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

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LMy mom also has to use multiple pillows. If she doesn’t sleep at an angle (as mentioned by @Naejohn) she also gets rocking/dizzy/rotational vertigo. We had to cancel a spine/neck MRI recently because she couldn’t lie down flat. The angle in which she sleeps at is maybe like 40-45 degrees? But it helps her as well. You may want to try it?

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:kissing_heart: hope this week is going better for you

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@Naejohn @Bebop I’ll definitely try it… my aunt’s husband suffers from vertigo (not sure what are the causes) but now that you mentioned it I remember her telling me that’s the only way he could sleep as well so I guess it’s a common issue between vestibular sufferers

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Thanks. This week has been a MAV disaster. Sometimes they just are. :upside_down_face: I keep on keeping on. And I come get strength from my MAV family. Thanks for your love. It is very much reciprocated. :sparkling_heart:

Again, we are all different, but i use the “my pillow”. It has changed shape over the years and after being washed, but it is the only thing that supports my neck. Keeps my neck and head up and the spins away.

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Diana,
I was definitively diagnosed with Meniere’s Disease at the end of last year, by an ENT & Neuro-otologist. I believe my attacks were brought on by a few years of high stress. Triggers identified are: stress, caffeine, large amounts of salt, ‘blue light’ (I have TheraSpecs for this), and bright light.
I want to make three points here:
Firstly, regarding your PCOS &Endometriosis: Low-to-no carb diets have helped thousands of women. (various names to Google: LCHF, Carnivore, Keto) You will find that a low carb diet will help with your other symptoms as well.
Secondly, re. migraines, look up Dr Angela A Stanton, & her book “Fighting the Migraine Epidemic” - she does advocate a fair amount of salt, but I just spread mine out over the day.

Thirdly, re MD treatments: I take 6 x 16mg Betahistine & 35 mg Amitriptyline, but have tried Anti-viral (Aciclovir) because of the link to the Herpes virus (Google it), and diuretics - both were not helpful, however, other sufferers have good results. When an attack occurs (not recently) or I feel it might occur (again, not recently) I take Diazepam (Valium), and Stemitil. What I have recently (4 weeks ago) had an Intratympanic Steroid Injection, which, after two weeks, started to make me feel almost ‘normal’ again - I will be having at least one more soon. This is a much safer injection than Gentamicin, as the Gentamicin ‘deadens’ the inner ear, and is considered a “last resort”: I actually had a small increase in my hearing ( I am only affected in my right ear), and the tinnitus is lower.
You will need to find a good ENT for discussion over this treatment. I was lucky enough to see an amazing ENT, who is also a pioneering Cochlear Implant surgeon - he did the final exam ( an ECOG), which diagnosed Meniere’s.
Good luck Diana, and don’t give up, keep digging!
Cheers
Naomi (in Australia)
p.s I tried putting links in this message - for steroid and Gentamicin injections, but it’s not allowed.

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Thank you, Naomi!

Diana - let me echo Naomi here. You know I’m in that same PCOS/endometriosis boat. Ketosis or other low carb is pretty much a must. It helps my MAV, too. :slight_smile:

And, the Angela Stanton book is thick, hard to read and worth your time. I recommend it.

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