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Camille’s Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
Start of chronic phase:
Age at chronic onset:
Started medication:
Stopped medication:
Number & type of consultants seen to date:
Diagnoses received (one I’m “running with” first):
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:
Persistent or intermittent tinnitus and character:
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines:
Any family history of migraines:
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get)
My Worse Day Now: (description of the worst day you get now)

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 …
  • The first thing I did …

Start of Journal

Today I …

Hi All,

Unfortunately, I am not new here, but I do feel like I am starting from square one. Long story short, I developed symptoms in the Fall of 2015, finally started medication in the summer of 2017, came off of medication in 2018 and was doing well for a while with just lifestyle and supplements. For most of 2019, I did not have a strict routine and I was not on medication. Slowly over the course of 2020, I feel that I have regressed to a point that I don’t even remember having in the beginning. For example, I feel like I feel worse than I did when this started, if that is even possible. Here is what I am currently doing/experiencing:

Supplements:

-Vitamin D, B-Complex, SAM-e, and iron
-Exercise or walks a few times a week
-I try to eat at regular times with meals but not always
-Mostly regular sleep/wake schedule

Symptoms:

-Tinnitus (it is a mild electricity sound that I developed almost two weeks ago and has not gone away)
-My right ear feels weird (I wouldn’t describe it as “full” exactly, but it feels off)
-Constant sense of motion (I notice this feels worse towards the end of the month after my period. The motion can also vary. Sometimes I feel really dizzy and other times I barely notice it.)

This past week has been pretty hard. It feels hard for me to walk around and even drive. I feel like my ear and my brain are in a battle and it is throwing me off.

I really don’t know what to do at this point. In the past, I have had an MRI, MRA, hearing tests, balance test, etc. I also want to mention that I have recently lost about 40 pounds, which took me a long time to do. I feel like I may have to go back on medication for a bit but I am terrified because I really don’t want to gain weight.

Can anyone please help me and talk to me? I think it would be really helpful to talk to someone and get some ideas of a plan of where to go from here. I know there are many people struggling outside of myself, but I really need someone right now. Thank you so much for taking the time to read this.

I’m so sorry to hear that MAV came back around. My neuro-otologist said in his experience some are able to go off prophylactic medication and some are not. You can only really tell by going off the meds and seeing what happens. But it is reassuring you had a period of doing quite well. You might consider returning to the med that initially helped you but I totally understand the weight gain side effect can feel really defeating. Have you had any other big life changes or stressors?

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Hi Naya,

Thank you so much for getting back to me. I think I partially messed myself up by not taking care of myself in 2019. Maybe if I had stuck with the lifestyle and supplements changes, I wouldn’t be in this place. Do you think I should do any further testing? Sometimes I really question the diagnosis I got of VM/PPPD. As far as life, I did get laid off in March, and then got re-hired by the same company in May. That was a stressful period. I also know I need to take care of my mind because I have certain thoughts that are not helpful for me. I tend to think that maybe I am sick because God is punishing me because I am not living an authentic life. I also have anxiety that my boyfriend is somehow causing my symptoms because they started around the time we got together. The problem with that is that he is a wonderful partner. So along with the physical aspect, I struggle with my thoughts and mental health as well.

There are so many unknowns with migraine and especially with MAV. The further testing for me was mostly for peace of mind, which is worth a lot depending on your situation. The same neuro-otologist also told me about 10% of MAV patients have an underlying ear pathology in his experience. The brain can essentially hyper-respond to ear issues in those prone to migraine. And there could be other underlying contributers. The important part is to find a doctor who is at least somewhat familiar with MAV so they don’t send you on a wild goose chase.

To my understanding, you can make progress by trying to find and address the driving force (hormones, diet, sleep, stress, vitamin deficiency, medical issue, etc) but you can also make progress by directly addressing the migraine through migraine prophylactic medications, lifestyle changes, and decreasing triggers. Or do both. A good place to start is to decrease any caffeine consumption - MAVers are particularly sensitive.

Also, I highly recommend the Curable app. It has helped me immensely with coping - which is half the battle - and it also helps address the pain/overly sensitized cycle our brains can get stuck in. They usually have a half-off deal going. For me it has been well worth it and I am not an “app person” normally at all.

3 Likes

Can I ask what tests you have had done? Thankfully, I do have a good neuro-otologist who I am thinking of going back too.
Yea, I think long term I definitely want to get to the root of the problem, but I feel like right now I might need some medication to get out of this really hard part that I am in. I also don’t drink caffeine or alcohol right now so I am a little upset that I am struggling so much.
Thank you for letting me know about the app and I am glad it is working well for you. When I got well last time, I still dealt with emotional problems from all of this so I know I need to work on that too.

1 Like

It will depend on your personal case but with my history of concussion and whiplash the most relevant tests I had done were brain MRI, neck MRI, and a CT angiogram. With your period of recovery/few symptoms (?) that would provide a good “clue” for your doctor, I think, as to what might be appropriate next.

Thank you, Naya. This is a really hard period right now so I really appreciate you talking to me.

Hey Camille, sorry things have been rubbish. It’s a long long road.

This is now a Personal Diary. The first post is a Wiki you can fill in the details of. Be wary of Markdown formatting. Try not to delete the formatting. Hit the Edit button in the first post to amend. Would you mind completing? At your leisure of course.

These are exactly my ear symptoms that persist to this day. My left ear doesn’t feel full exactly but most definitely “off” as you say!!

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It’s amazing what interesting titbits come out in general conversation sometimes. @turnitaround and I have often discussed this poss/probability. One would really have expected such to be picked up during testing however apparently some things are only discovered on post mortem.

Hello,

My right ear has had periods of feeling off over the years of ke dealing with this, but has seemed better when I get better. The thing that worries me is the tinnitus type sound now. My doctor thinks it will go away in time. Anything I can do about this? It really depresses me. I also feel like I developed this symptom because my dizziness is worse and hopefully once I get that under control, the other symptoms will fade.

I am medicated and do not have persistent tinnitus. I do however notice it in one ear when my balance is struggling. Is it because of increased sensitivity or just noticing it more because when unwell we are hyper alert to symptoms and even notice a symptom the brain may usually block out? Tinnitus is not dangerous just irritating, bothersome and/or disruptive depending on severity. Some people use white noise machines as a diversion to block it out. Walking I suppose music on head phones would do the same. The quieter it is the more obvious tinnitus becomes. Theory is the less attention we pay to it the less we should hear it.

Recently on a thread on here Ginkgo Biloba or lemon Lindberg bioflavonoid was suggested but no further details given. Might be worth investigating.

That’s a good question. It is hard to say. What medication are you on and how are you feeling?