First acute balance issues : January 9, 2018
Any suspicious physical event/trauma leading up to dizziness : Nope, tried to get out of bed and couldn’t.
Start of chronic phase : seems as if it were chronic from the beginning but in retrospect it was acute / debilitating vertigo for a month, then leveled off to a constant nightmare thereafter.
Age at chronic onset : 47
Started medication : Dec 4, 2018
Stopped medication : NA
Number & type of consultants seen to date:
GP: day of onset and about once per month thereafter seeking help.
ENT: 2 1/2 months after onset and about 5 times thereafter seeking help. ophthalmologist once.
Physical (vestibular) Therapist 3 months, twice a week.
otolaryngologist: finally a real diagnosis!
Diagnoses received (one I’m “running with” first):
Medications used successfully for MAV: Amitriptyline and Nortriptyline
Failed medications for MAV: NA
Non-pharmalogical treatment tried which helped :
Magnesium citrate 400mg,
vitamin B2 400mg,
Non-pharmalogical treatment tried which didn’t seem to help :
Apple cider vinegar
Inner Ear Plus
Dietary triggers identified :Caffeine, MSG
Any hearing loss in either ear : No
Persistent or intermittent tinnitus and character :
Screaming tinnitus… absolute screaming. Now gone.
Other chronic conditions I’m suffering from :
All of the above are now diminished with Amitriptyline.
Medication I’m taking for other conditions :None.
Any personal history of migraines : Have had “bad headaches” for years.
Any family history of migraines : Father, grandmother and grandfather.
Any history of ear problems : Oh yes! I grew up with cotton balls in my ears. So much ear trouble as a child.
How did friends, family, and doctors react to your symptoms? They were supportive but couldn’t possibly comprehend why I was not getting better when everyone with BPPV “does the epely and gets better”. Had very difficult times with my husband who was frustrated by not being able to help. My mother thought I had PTSD from an horrible explosion at my work that killed 4 people 7 months prior. Drs (until my most recent) always seemed just baffled…not that they didn’t want to help, just didn’t know how I suppose.
January 9th was the day that everything in life changed for me. I woke and simply tried to get out of bed like every other day… I couldn’t even begin to explain how my world spun. It took me about four tries to be able to sit up. I was certain I was having a stroke. Got to my Dr right away and she did all kinds of tests, even an EKG to rule out stroke. Diagnosis was BPPV, go home and do epleys. I couldn’t decipher which side had been affected, so I did both sides for the next month straight several times a day. During this time, I had my first ever panic attack… now, mind you… I had never had a panic attack and being the “strong one” in the family, I never thought I would. Boy was I wrong. Panic settled over me into a constant for months. Several trips back to my GP yielded the same results (BPPV). Went to ENT next, had MRI with contrast, blood work, VNG testing and Caloric Testing. Results there was: labyrinthitis. Dr said “it’s like Bell’s palsy of the inner ear and will go away”. It never went away. Ophthalmologist next and he was the first Dr to say the word “migraine” and RXd Amitriptyline. I didn’t take it… I was too scared. Vestibular rehabilitation began in August and was so hard! Made me feel much worse at times but I was determined to kick this! Went twice a week for 3 months with no help. In the meantime, I was trying every supplement I could reference remotely to inner ear problems. Nothing helped. Every single day living in constant fear of everything! Moving, laying down, closing my eyes, opening my eyes, room spinning, me spinning, staircases, bending over, showering, elevators, driving, street signs, headlights, television, sunlight, darkness, mirrors, reflections… seems every single thing was torture! Cancelled all vacations we had planned, desperately cancelled all appts with customers. I was frozen in pain and fear. Finally, I got a letter in the mail from Dr Goebel whom my GP contacted on my behalf. The letter had a questionnaire and if applicable I would get an appt offer. I got an appt offer within a week! Dr Goebel is the Director of the Dizzy and Balance Center at Barnes Hospital. I was elated and so excited (and a little apprehensive) about seeing him! I worried that he wouldn’t find out what was really wrong since no one so far seemed to know. My visit with him was Dec 4th 2018 and a day I will never forget. After a hearing test, I spent about 30 minutes with him and was diagnosed with Vestibular Migraine. He reviewed all of the previous test results I brought with me, said he was 100 confident in his diagnosis and explained how easily it is to misdiagnose while all my other physicians had good intentions they were off base. He prescribed 50mg of Amitriptyline. I will see him again on March 5th to follow up. Today (January 11th) I am on day 17 of 50mg Ami and cannot tell you what a life changer this has been! I am now on an average day no less than 50% better and many days 70-80% better… already! My tinnitus is gone, headaches diminished, TMJ not noticeable, IBS gone, balance improved so much, light sensitivity diminished and sleep so well. Prior, I would sleep for a couple of hours, wake in terror, sleep a couple hours, wake in terror… for 11 months. I have been getting on the treadmill for 20 minutes a day for the past week to increase my stamina and help with my balance. I have flown to California and to New York and survived! I am one of the lucky ones no doubt. I have a long way to go, but honestly could not ask for more than where I am based on where I’ve been. Very blessed lady right here
March 12th 2019 Update:
Hi everyone! Thought I would update my diary with my 3 month follow up with Dr Goebel today. I have now been on Ami for 11 weeks at the 50mg dosage. He seems happy with the progress I have made so far and I am happy too. All of my symptoms have lessened in severity with the exception of the tinnitus which has completely disappeared!
Headaches are still daily, but not as severe
Balance improved dramatically
Visual issues (photophobia, visual snow etc) have improved dramatically
On average, I would say my days are in the range of 70-80% of what was “normal” before VM struck. My “bad days” are somewhere in the 60% “normal” range. I’d say that’s pretty good comparatively! Bad days are very balance challenged and usually involve a whopper of a headache. Dr G will see me again in September to re-evaluate my progress but for now, I keep doing what I am doing. I am very pleased with today and happy to have such a wonderful Dr who actually “gets it”. I spent so many months in agony with Drs who looked at me like I was crazy… not Dr G, he can finish my sentences when I describe something only us MAVers usually understand.
Hi everyone, Just an update since my diary has not been updated in a while.
12 weeks ago I just couldn’t handle the weight gain on Ami so we switched over to Nort. It was a smooth transition equal mg to mg conversion. Nort is also knows for weight gain per my Dr, but a lesser degree than Ami. I have done very well on Nort with nearly the same support that I had with Ami. Nort has helped quite a bit more with my actual headache pain but have had slightly more dizzy moments. I visited with Dr Goebel on Tuesday this week for my 6 month follow up and he thinks it’s a good idea to increase to 75mg Nort. I am now on day 3 of 75mg and have done well so far. Day one was pretty rough but otherwise doing well.
I asked him a question that we all want to know: “Will I ever return to 100% normal again”. He was very gracious and honest in telling me “100% may be a bit of an overreach”. He said his goal is to get me to the point where I call one day and say “hey doc, I am managing my new normal just fine and don’t need you anymore”. You see, we will adapt to a new normal eventually… it’s human nature. I am fine (understatement) being a revised version of myself and think that if we place too many expectations on an unknown future, we may hinder our healing. I’m more than fine living this post-MAV life of mine… I am more grateful than I have ever been. Two year update and thoughts in retrospect
Two year update 1/12/2020
Hi everyone, it was two years ago that I woke one day and my world changed forever as you can read about in my diary above.
My current status after 2 years of onset and 1 year of medication:
I am averaging 85-95% better! There actually are days that go by that I only think of the MAV once or twice, mainly when I go to bed and when I wake up. There are rarer days that I don’t feel great, but still none near how I felt a year ago. I can do everything I could do before, although some things I wouldn’t want to Like going on a cruise or roller coaster ride!
Here are things that were torture for the first year + some months into medication & how I currently handle each.
Ceiling fans. I don’t even notice them anymore
Repetitive patterns on walls, ceilings. Annoying on “bad days” but 90% of the time I don’t notice them anymore.
LED, florescent, halogen lighting. Annoying but not debilitating
Driving: fog, rain, stoplights with cross traffic, windshield wipers. Really no issues at all anymore… I have an incredibly long commute to work and am completely fine now
Showering. No issues at all. Washing my hair was a real horrible experience and I was super dizzy the whole time. No issues at all now
Brushing teeth. No issues at all
Sleeping: wedge pillow, regular pillow, neck pillow around head, sleep on back only. Rolling over or neck strain triggers me. I still sleep with one small 4” wedge pillow and my regular pillow on top. I still sleep on my back for fear of rolling over. Could I without getting dizzy? My Dr thinks so but I’m not trying it I’m comfortable and can sleep though the night so no reason to take the risk
Mopping, sweeping. No problem at all now
Stirring pots of steaming food. No problem, never crosses my mind now
Water: bathtub, standing on the Hudson at water level was awful, even water swirling in the sink. No problem at all now
Scents: candles, perfume. This one can still be a trigger for me. My coworkers are thoughtful with scented candles or air fresheners. I wish I could get that one lady at church to let up on the horrible perfume though It’s so strange to me in retrospect since I had a side gig making highly scented soap, shampoo, body spray, lotion etc for the 10 years prior to MAV
Weather changes: This is also one thing that still lingers. Not much to do about it I suppose but maybe it will lessen over time
Also neckache and constant sinus pressure are nearly gone also.
Actual headaches are still fairly common for me. I’ve had headaches my whole life so it’s nothing new but I can say they are not as horrible as they once were, so that’s progress!
I can also wear heels again which is quite the feat in my book!
2 1/2 Years into VM
Hi everyone! It’s been a bit since I’ve given an update.
Here we are mid-way through 2020 already and what an eventful (ugly) year it’s been! I have found small joys along the way and I hope you have too!
So, as you know my Dr switched me over to Nort from Ami and I have done so well on 75mg Nort. Still have small “spin events” and daily head pressure and headaches. Again, I’ve had headaches as long as I can remember (decades) so, I really don’t know life without them.
Anyway, I had my first “virtual visit” (due to CoVid) with my new Neurologist on Tuesday this past week. I was apprehensive since I loved my previous Dr and I’ve heard so many Drs don’t “get VM”. I was on video conference with him for nearly an hour and he was wonderful! He specializes in migraine and took so much time to explain science, theories and treatments. He wanted to know so much of my journey for these past 2 1/2 years… it was very refreshing.
We started Topomax in addition to Nort to try and get the headaches under control. He was very concerned with those and assured me the that I shouldn’t have to live with them! He believes with Topomax we can get them under control as well as the balance of the vertigo, visual issues and eventually ween off of Nort. Also, Topomax will help me potentially lose the weight that Ami gifted me but I can seem to budge. I know many of you have gasped when you read Topomax… I was very scared by the potential side affects also. I just had to try. So, began Tuesday eve and here we are on Sunday as I write this. The first two days were tough.
Horrible headache, heavy head, incredibly tiered. Third day slightly better and by evening I felt good. Yesterday I felt good! Probably better than I have in a VERY long time! I’ve woken the last two days without a headache and feel very optimistic that we may be onto something great here! I will keep you all updated as I get further along into the titrations etc. As of now, I am on 25mg and will go up to 50mg in 2 weeks, then up to 75mg in 2 weeks, then to the optimal dose of 100mg if needed.
I feel good knowing my Dr wants updates, he wants communications and feedback and wants to be my partner in this journey. Hang in there everyone and find a good Dr… if you aren’t 100% confident in your care… keep searching! I believe a good Dr and HOPE are the most vital components to healing