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Renee’s MAV journey

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.
Optometrist once.
Physical (vestibular) Therapist 3 months, twice a week.
otolaryngologist: finally a real diagnosis!
Diagnoses received (one I’m “running with” first):
Vestibular migraine
Medications used successfully for MAV: Amitriptyline
Failed medications for MAV: NA
Non-pharmalogical treatment tried which helped :
Magnesium citrate 400mg,
vitamin B2 400mg,
CoQ10 300mg.
Non-pharmalogical treatment tried which didn’t seem to help :
Ginkgo biloba
Apple cider vinegar
Calcium
Nasacort
Nasalcrom
Sudafed
Triphala
Inner Ear Plus
Sinusala
meclizine
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 :
TMJ,
PCOS,
IBS.
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 :heart:
Renee’

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.

9/13/2019
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.

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What an inspirational story. So much strength and perseverance. You’ve been through a hell of a year, but how wonderful to read you’re starting to feel better. Wish you a good further journey of recovery. :heartbeat:

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Can I confirm you are on migraine diet, and caffeine restriction?

You really have done well to get sorted in a year. I’m sure prompt treatment really aids recovery. And not being hyper med sensitive and being able to tolerate Ami, one of the more established treatments for MAV must surely have helped too. Helen

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Hi Helen, my diet has changed considerably as I am simply using the chart my Dr gave me which is not nearly as inclusive I’m sure as the Johns Hopkins or others that help MAV. I have eliminated caffeine and not an easy task to rewire my brain which has been on a high caffeine diet for decades! I think caffeine and MSG are big ones for me. Funny that I’ve tolorated Ami so well considering I have always been a lightweight when medications or even alcohol are involved. Luckily, I don’t like alcohol so elimating that one was no issue. Ami has treated me well… don’t get me wrong, there were days that I had side affects, but none any worse than my typical horrible day. I do also think the B2 and Magnesium Citrate have helped tremendously.

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Thank you so much Lucy! Hardest thing I’ve ever gone through no doubt and so many days, weeks, months I didn’t know how I would survive. I literally cried every single day for months… that’s not me!
:sparkling_heart:The emotional side of healing may be the single most important to recovery for me. :sparkling_heart:

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@Onandon03 , here is the handout from my Dr which is what I follow. I’m sure nothing much different than others that have been uploaded. Miss cheese, peanut butter, pickles and olives the most!

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Yep, I echo the wondering how to survive, the crying. For me it’s pretty much survival mode every day but determined to get through this if only for my little boy’s sake.

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I love the vodka suggestion :rofl:

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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.

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And is Dr Goebel expecting your symptoms to continue to reduce at the 50mg Ami level. And the Ami to control the daily headaches eventually. Or didn’t he say. Helen

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So pleased for your Renee. Have read your descriptions of how unwell and how desperate you felt when it was bad (this is how I still feel most of the time!) so it’s so good to read you’re starting to feel better.

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Hi Helen, he does hope the Ami will continue to conquer some of the lingering issues… he does makes it clear that not all of them will go completely away, thus the “migraine brain” comment.
He said “being a migraineur”, I will always be sensitive to various things. He said I probably won’t want to see a 3D movie with virtual reality goggles anytime soon :joy: and I wholeheartedly agree with that comment!

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Lucy, I am so blessed to have the support of you and so many here! Thank you! Don’t ever stop searching for your cure… I firmly believe there is one for each of us, we just have to find it. While I am not cured, I have come so far that I can live this way and am grateful to be a well as I am. :sparkling_heart: Thank you Lucy! :sparkling_heart:

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Me neither. That’s one thing I’ll most probably avoid for ever. It would be my idea of torture. I doubt I’ll ever go sailing in a Force Seven Gale ever again either but then Life should be about what you,can do, not what you can’t!

Interesting though that he’s not expecting a complete ‘cure’ though. Helen

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Blimey and has giving up all that helped?!

The problem I have with migraine diets is that it’s fairly clear MAV <> regular migraine.

I think the 6C’s is worth trying for relief rather than banning all this? Especially when you are on medication in any case?

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Hi Helen! Maybe too early for him to commit to a cure, he might just be hedging so he and I will be pleasantly surprised if / when a cure comes :wink: I have faith that I will be cured one day, I’ve climbed this far… I can keep on climbing! :mountain:

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Hi James! I have followed this handout religiously… hard to say for sure if it has helped since I started taking Ami at the same time. I have messed and eaten a freshly baked yeast roll once :joy: I didn’t die, I didn’t get a migraine… although once I remembered I shouldn’t have eaten it, I did panic a little! I’m not planning on reintroducing any of it, I’ve learned how to do without these things and don’t want to take any risks. Now, I just have to curb this God awful weight gain and cut out sugar :cry:

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Wow, the discipline!!! I’m impressed! (but yeah, cut sugar and it should lower tinnitus too).

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Thanks James! Sugar is my biggest weakness and the Ami ramped that up about 10 notches! :woman_facepalming:t3:

Hi everyone,
Thought I would give an update since it’s been a bit. This week will mark 5 months on Amitriptyline at the recommended dose of 50mg. I am doing great! :raised_hands:t3:

Most days I function at 80%-90% of what was my “pre-MAV” normal. I am driving 80 miles each way to work and not having to sit for 10 minutes in the car and wait for my brain to catch up. I can walk with a pep in my step , while the entire previous year I “shuffled” to stay “grounded”. I do no have tinnitus any longer at all and the head pressure is minimized greatly.

I still battle headaches and don’t know what to expect for the future with them but an aspirin and Tylenol knock them out pretty well. My ever-present-pre-MAV-neck-ache comes and goes now. I can have a neck-ache on my less than stellar days but for the most part it has much subsided. I still have a few visual issues that creep in with visual snow or shooting stars but those are minimized too.

I stopped keeping a symptom diary since it reminded me to write down the “bad news” along with the “good news”. I try and focus 100% of my energy to the good news! My anxiety is non-existent until I have a “bad day” which would be about 75% of “pre-MAV normal” and I get scared. Rocking sensation is also rare but still happens occasionally. Any vertigo that I experience now is quite rare and incredibly brief. It’s a split second and I’m back to baseline.

I’d say that for me, Amitriptyline has been a God~send… other than the weight gain which is the only “downer” on this medication.
Still maintaining at my new voluptuous one size up from “pre-MAV” size :rofl:

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