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Aero`s Vertigo Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: May 2010
Number & duration of acute phase(s): May 2010 (6 weeks), Dec 2013 - 2017/18, Oct 2019 (ongoing)
Any suspicious physical event/trauma leading up to dizziness: Syncope/Vertigo Attack May 2010 (hit my head)
Start of chronic phase: Dec 2013
Age at chronic onset: 33
Started medication: no medication
Stopped medication:
Number & type of consultants seen to date: Ents, Neurologists (many over the years)
Diagnoses received: Bppv and chronic vestibular Migraine
Medications used successfully for MAV: I received cortison infusions to treat status migraine / acut vestibulare Migraine
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: Magnesium and Vit B2 supplements
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: I try to avoid histamin rich foods
Any hearing loss in either ear: Yes, hearing loss (high frequences) in my left ear
Persistent or intermittent tinnitus and character: Yes, high-pitched (melodic) tinnitus every day, which turns into a loud roaring sound, when things get worse
Other chronic conditions I’m suffering from: Allergies
Medication I’m taking for other conditions: Levocetirizin (5mg) resp. Cetirizin (10 mg)
Any personal history of migraines: Yes, 20 years of Migraine Headaches with nausea etc.
Any family history of migraines: Yes, sister, mother and grandmother
Any history of ear problems: otis media (as a child), tubal catarrh most winters due to my allergies
How did friends, family, and doctors react to your symptoms?: Most doctors weren`t very helpful. Up until this year most of them dismissed my symptoms as psychosomatic.

Symptom summary

(Your current state) Not so good, i try to survive every day

What’s Gone: (what symptoms you had but no longer get) Most Aura-Symptoms: Tactil and body hallucinations (feeling my hands spin; feeling my tongue spin; feeling like a mosaic, that breaks into pieces etc.), Numbness of my legs and arms; Extreme vertigo attacks with shaking, lightheadedness and trouble breathing; Extreme spinning sensation and feeling like being a combat jet test pilot, clogged ears, the feeling of fluid in my ears etc.
What’s Ongoing: (what symptoms you still get) Bppv (spinning room etc.), pulling and rocking sensation 24/7, Nausea (almost everyday), sleeplessness, extreme vertigo with racing heart and hot flushes lying down and turning over in bed, trampoline floor, Ear Pain, Face Pain etc.
My Worse Day Now: (description of the worst day you get now)
My worst days: Status migraine this year; I woke up from my sleep every night and felt like i was dying

Rough History

(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)

  • It all began when …i went to a yoga-class in oct 2019 and had a bppv attack afterwards. The doctors i went to weren`t very understanding, i was told i had a psychosomatic disorder, and my symptoms worsend every week until i was bed-bound. In February 2020 i spent a week in hospital and finally got my diagnosis. I was prescribed Amitriptylin, but i never tried it (mostly because it interferes with my allergy medication)

Start of Journal

Today I …

2 Likes

Welcome and thanks for starting a Diary. I’ve made this a Wiki so you can edit the first Post summary at any time (but new diary entries should generally be a new Post).

Sorry you are still experiencing such strong symptoms after such a long time. Hang in there, “trauma” MAVers tend to recover eventually …

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Welcome Aero. You’ve definitely got it rough. I’m sorry it took so long to get a real diagnosis. I too have a long term case. Have you considered trying meds? I’m sure there are many that will not worsen your allergies.

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Hi and welcome. Years of misdiagnosis or no diagnosis at all are a common occurrence with MAV. Seems to happen all the time. As @flutters has already suggested give meds a try. MAV is a tough beast to get under control and meds are the best option. Of course we know nothing of your allergies as yet but many MAVers have allergies. We tend to be hypersensitive to meds as well. Goes with the terrain. If it’s any help to know there are preventatives that have antihistamine properties too. And doctors love nothing better than to treat two conditions with one medication. Then again sometimes there are strong links between allergies and migraine. Histamine is one worth researching. So don’t look on the allergies as preventating treatment but more as an intro into finding the right treatment for you.

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Botox and the CGRP drugs are allergy neutral as well as many of the pills.

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