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
(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
-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