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jeng132's diary - A life of suffering...


First acute balance issues : March 2016
Number & duration of acute phase(s) : 3x (2016, 2019, 2020) roughly 3-6 month each
Any suspicious physical event/trauma leading up to dizziness : none
Start of chronic phase : March 2016
Age at chronic onset : mid-30s
Started medication : verapamil 240mg, magnesium 500mg, b2 400mg
Stopped medication : verapamil 180mg (dose increased)
Number & type of consultants seen to date: 5 (primary care physician, ophthalmologist, physical therapy, otolaryngologist x2)
Diagnoses received (one I’m “running with” first): virus, stress induced dizziness, vestibular migraine (current diagnosis)
Medications used successfully for MAV: unknown, just started meds
Failed medications for MAV: unknown, just started meds
Non-pharmacological treatment tried which helped : unknown, just started supplements
Non-pharmacological treatment tried which didn’t seem to help : unknown, just started supplements
Dietary triggers identified : None identified yet, weaning from caffeine and removing alcohol.
Any hearing loss in either ear : none
Persistent or intermittent tinnitus and character : intermittent tinnitus, unilateral
Other chronic conditions I’m suffering from : cluster headaches
Medication I’m taking for other conditions : ibuprofen, naproxen
Any personal history of migraines : yes
Any family history of migraines : unsure
Any history of ear problems : none
How did friends, family, and doctors react to your symptoms? : Only my spouse, best friend and supervisor know this is happening, they are all supportive.

Symptom summary

What’s Gone: Nothing is gone yet, I’m just getting started on this journey
What’s Ongoing: I have intermittent dizziness every single day, some worse than others. On “good” days, the dizziness is minimal and I can function at work and home.
My Worse Day Now: On my worse days, I can hardly move from bed or the sofa and work is impossible.

A life of suffering…

  • I have suffered from headaches, cluster headaches, and migraines my entire life - from as young as I can remember. I always thought it was an “adult” problem, so I was never treated for them. I’m also an empath, so I am super sensitive to loud noises, strong scents, etc. My spouse is my complete opposite, so thrives in what I see as chaos. I am usually able to work through these busy situations, but during these dizzy episodes I can’t.
  • March 2016 - The first dizziness episode I had. I saw my primary care physician and an ophthalmologist (I thought I had nystagmus). PCP referred to ENT.
  • April 2016 - ENT performed audiometry and eye movement tracking test, determined to be viral infection of inner ear, referred to PT.
  • May-July 2016 - PT gave me the following exercises: compensatory strategies corrective saccades, rhomberg, gaze stabilization. By end of July, symptoms resolved.
  • June 2019 - The dizziness has returned, this was a very stressful time in my life. Revisited PT to refresh my memory on the exercises. These worked to clear this episode after a few months of at home exercises.
  • June 2019 - The dizziness returned again in June 2020, another very stressful time in my life compounded by COVID.

Start of Journal

Oct 26, 2020 Today I… saw a new ENT provider and was given a new diagnosis of vestibular migraine, which made total sense due to my history. I was given a prescription of verapamil 180mg and told to start magnesium 500mg at night and b2 400mg in the morning. An MRI will be scheduled to rule out potential tumor. I was instructed to watch “the big 5” - hydration, caffeine intake, sleep hygiene, alcohol intake and stress levels. I generally sleep well each night and don’t imbibe often so I feel like those will be pretty easy. I struggle with staying hydrated due to work and life distractions, but am trying to be more conscious of this every day. I will start half-caf coffee tomorrow. Managing stress will be a struggle. Life in general is always stressful for me, but (like everyone else) it is even more so because of COVID. I am bad about taking time for myself and know that this will be what will help me to feel better. Goal to be at 50-80% improvement. Once I get to that point, I will journal the prior 24 hours from start of symptoms to find triggers. First dose of verapamil and magnesium today.

Oct 27, 2020 Today I… made my morning coffee as half-caf with the hopes to being straight decaf by Saturday morning - I am worried about exacerbating my headache symptoms by removing caffeine altogether. I had trouble finding b2 at local stores, so ordered online and it is expected to deliver by Nov 6th.

Oct 29, 2020 Today I… was having a ton of trouble focusing at work. Cluster headache pain 5-6 as soon as I arrived to work. Thankfully medication (I am fortunate that 4 ibuprofen and 2 extra strength acetaminophen help get me to a manageable place) helped and I was able to continue working. I had a very stressful event in the evening which I didn’t think was bad, my head told me otherwise. Another early night.

Oct 31, 2020 Today I… had my first cup of decaf coffee. Like others I have a long time habit of daily coffee.

Nov 1, 2020 Today I… continued to have an episode of cluster headache. Today was one of the worse ones. I was terribly dizzy and nauseous.

Nov 3, 2020 Today I… started my b2 supplement. I am optimistic that it will help.

Nov 7, 2020 Today I… tried having 1 glass of wine with dinner. I was never a heavy drinker, but instead only drank when going out to dinner and in social events. By 1900 the room was spinning and my headache pain raised from a constant 3-4 these last few weeks to an 8. Needless to say I went to bed early and hoped for a better tomorrow.

Dec 16, 2020 Today I… realized how long it had been since I’ve been on this site. Work has been busy and the “work on eliminating stress and make sure you get enough sleep” orders by the doctor – out the window. Early on during this pandemic we are in, the husband and I thought, “you know, now is a great time to get a puppy!” We were put on the wait list, moved to another wait list, shifted to a third wait list, and finally fourth times the charm. We brought home our baby girl the weekend before Thanksgiving. Needless to say, there is spotty sleep going on and though it is “good stress” it is still nonetheless. I saw the ENT doctor in follow up yesterday and my dose of verapamil was increased. She’d like me to get down to 50-80% reduction in dizziness and cluster headaches, and I’m still dizzy and have a slight headache most days of the week. Though, there has been an improvement in both the dizziness and headaches so far and I am optimistic that things will continue looking good for me. I still have occasional bad days, last night being one of them, where I am in bed far earlier than I like to be.


@jeng132 great that you are keeping a journal. :+1:

However, I wouldn’t recommend your dates go backward because sooner or later you will hit the Topic size limit and will have to create a new Post which necessarily will go in opposite direction.

Also if someone wants to discuss your diary with you it will definitely make less sense to post in the OP (like just now :wink: ) as people will look for the bottom of the Topic and find me not your updates.

So going forward I’d recommend creating a new Post for a new entry.

The Wiki system is mainly intended to allow you to edit the summary fields as and when eg your overall condition changes.

Keep on trucking!