Three years into diagnosis maze

[Heatherrr]

Hello - well, how to sum up 3.5 years of searching and suffering? I’ll make it as brief as I can: August 2015, started feeling off balance, and generally unwell. The room didn’t spin, but it felt like the ground was moving, or walls I was leaning on were falling backwards. Two weeks after symptoms started, I started hearing my heartbeat in my ear. I went to doctor assuming I had an ear infection. Ear looked fine.

Symptoms got progressively worse, kept going back to the doctor. The heartbeat in ear stopped after one month. Had a CT scan. Normal.

Symptoms never eased, and started being referred to various specialists. Have had two MRIs, cardiology tests, you name it. Have seen two ENT, and three neurologists. One doctor wrote down possible neuritis, but never discussed it with me. I found out through family doctor.

Also suffer migraines frequently, and chronic severe fatigue. I own my own business, and things have become so unbearable that I am planning to sell it. I also have two young boys, and it’s been so difficult to be there for them like I want to be.

Triptans do help, but only with the migraines.

A physiotherapist recently diagnosed me with unilateral vestibular loss and gave me exercises to start.

I’m on a wait list for vestibular testing, but at this point am looking at a year’s wait list.

One neurologist said I’m a “migrainor”, and my symptoms are not uncommon. Suggested 400mg of magnesium a day, and botox. I’ve tried both. No real change.

Many of the specialists I’ve seen have suggested “chronic subjective dizziness” and asked if I’d seen a psychologist.

The other day my right ear, the one that originally had the heartbeat sound, started fluttering, I suspect all along it’s been something to do with my ear, possibly a nerve affected by my worsening TMJ.

Am definitely depressed and could use a community of people that “get it.”

Thanks for listening.
Heather

[dizzy3]

Heather, welcome and we do understand you. My MAV started 4 monts postpartum, so I know very well what is to take care of somebody and feel terrible. I think since you have been symptomatic for so long, and it seems to be migraine, maybe you need to start some preventive med. I dont know where you are, but you can look for a headache or a neurotologist specialist. My own experience has been with effexor, it has helped with all the crazy symptoms
and definitively with my depression/ anxiety. There are many other antidepressants that are used for this, effexor is on the first line.
Stay around here so we can cheer you up while you start the process of feeling better. Magnesium and migraine diet plus good sleep and exercise are good places to start while you start meds.

[ander454]

Hi Heather, I also have a young one to take care of. I made some life changes and it has helped me get a better handle on things, so I think selling your business might make some sense to reduce your responsibilities for a while and let your body relax a bit more. I can definitely relate to pushing onward with normal life and getting quite depressed and exhausted.

I have rocking sensations and walking on sponges, but never had the spins.

Did the neurologist have any more suggestions besides botox and magnesium??! My Neurologist has a seemingly endless supply of different meds and techniques to try. Thankfully the first one he prescribed (Verapamil) seems to be working pretty well at reducing my daily headaches, severe migraines, and overall dizziness. It’s a slow process to get on a drug and stay on it for 3 months to see if it works, but it seems that is part of the standard recovery process for this condition.

Anyways, welcome! We are here for you, your life will get better!

Erik

[Onandon03]

Hi, and welcome’

@Heatherrr

and could use a community of people that “get it.”

Well, look no further! We’ve all been there, and more.

@Heatherrr

on a wait list for vestibular testing, but at this point am looking at a year’s wait list.

I was misdiagnosed for 12 years (Believe it, it’s true). by local doctors who knew nothing about MAV, and even less about balance problems generally. Shaking off that misdiagnosis which stuck like a lable on my forehead it seemed, even ENT consultants tried to twist my symptoms to fit, proved difficult. So, do be careful.

To make true progress, you need a diagnosis. MAV has no definite diagnosis, it’s diagnosis of exclusion (hence the vestibular testing). Other conditions are quite different. If you suspect ear trouble, pursue it hard. You don’t want to kick the traces for a year.

While you are sorting that, if you think there’s a possibility it’s MAV might be worth trying the Migraine Diet and lifestyle adjustments you’ll find full details of which through the Welcome and Wiki section on here. You’ll also find alot about ‘ears’ and ‘TMJ’ using the Search facility. Some people find a mouth guard overnight helpful, However, if I were you, I’d want a much firmer idea of the cause of your imbalance before embarking on migraine preventatives because trialling those often proves no walk in the park and to do so possibly unnecessarily would seem ridiculous. Push for some much more prompt answers, Helen

[Janb]

@Heatherrr

The other day my right ear, the one that originally had the heartbeat sound, started fluttering, I suspect all along it’s been something to do with my ear, possibly a nerve affected by my worsening TMJ.

Hi Heather and welcome.
I initially got pulsating tinnitus too alongside the vertigo, dizziness, unbalancedness , eye and head throbbing , vomiting etc, but now on a bad day I mainly have ear and head pressure with tinnitus. The tinnitus varies in pitch and volume - it gets louder if I have done too much. Like you I also get ear fluttering mainly in my left ear - I used to get that before I was diagnosed with MVBD and like you thought it was an ear problem. My Neuro-otologist however has said my ears are fine (apart from a perforated ear drum in my left ears which I have had for years) and it is the MVBD causing the ear issues. I am hoping that the tinnitus and ears pressure will eventually go as have the dizziness and vertigo. It is very depressing, especially if you can’t get a diagnoses or find a drug that suits you. If you are in the UK see if you can get an appointment with Dr Surenthiran - he is the neuro-otologist I saw and he has seen some others on this forum.
It must be very hard running your own business with this and with young children to care for too- no wonder you are depressed. We definitely get it in this community. Jan

[Heatherrr]

Thanks everyone who weighed in. It definitely makes me feel less like a freak to find this tribe. I look forward to hearing everyone’s wisdom.

Heather

[Heatherrr]

So far the neurologists I’ve seen have been utterly useless. I feel like no one is listening. I’d try any drug for however long it took, but no one is even entertaining the idea that I need a prescription. They keep going back to the “have you considered seeing a counsellor for anxiety?” route. I get that anxiety plays a role, but it’s not anxiety!

I agree selling my business may be the best idea. It’s just so hard because it’s a labour of love, and has become part of my identity. It will be tough to walk away.

[ander454]

I started with an older Neurologist at a small clinic and he basically said I was fine too. My advice is to find a younger Neurologist at a bigger, well known hospital (mine had a 6 week waiting list).

Agree those life changes are hard. I was an early employee at a start-up and left a lot of stock on the table. In hindsight though, it was the right decision. I don’t regret it at all and I’m planning new endeavors as I recover. Imagine the possibilities when you are no longer dizzy!

[dizzy3]

hi @Heatherrr, I also struggle with the labor part, my work is research, a lot of thinking, analysis in the computer, reading… I was one day mourning all the things I feel I have lost because of this, and a big one was being a good researcher because it is what I love the most. So I decided not to give up, just take a pause. Right now I do as much as I can, but take a lot of time for me and then for my son, who is only 1 year old. So maybe is a matter of slowing down. If doctors are saying you have anxiety, find a doctor that is willing to try the meds recommended for MAV, some of them are for anxiety. You will find them on the wiki. But agree, find a younger neurologist or neuro-otologist who are more familiar with this or willing to learn from you.

[lsengara]

Heather,
Just chiming in with good wishes and commiseration. I understand completely about losing one’s identity b/c of how debilitating this illness is. But you are still you in the fundamental ways. (This is what I tell myself after loss of job, health, most social life, once-good figure, and beloved activities. Telling myself they may come back if/when treatment works.) Still the same person inside.

I hope you are successful in finding a good neurologist. I too have headaches as well as the horrible vestibular symptoms. Neurologist quickly diagnosed chronic migraine for me and your pattern sounds similar. I was told that despite it being tricky to treat, there are “literally hundreds of treatment options” and as this site can attest, there are indeed many ways to approach it, and many have found success/relief. I’ll leave it at that for now. Reaching a diagnosis was for me a relief but also a mixed blessing, since it’s a tricky condition to treat. But at least knowing what you are dealing with helps, so I hope you find a specialist who can help you reach a diagnosis that makes sense for you soon.