The Vestibular Migraine Community

Neurologist appointment was a diappointment....need advice please!


#21

Hi - I am currently on 30 mg. Luckily I have found relief with a very low dosage. I am hoping it will continue to improve so that I don’t have to increase, and can eventually try to come off of it. I hope your topamax reduction is successful!


#22

I think I should also add that I have figured out what my triggers are, and I try to avoid them when I am feeling a bit off, as well as I have been taking a multi-vitamin that has the supplements recommended for migraine (magnesium, B2, COQ10).


#23

Thanks for the recommendation! how long have you been on nortriptyline?


#24

Since June of last year. Be warned, it takes about six to eight weeks to really see the true effects, and up until that time you might see a worsening of symptoms. It never caused me to have a full on vertigo attack, but I did seem to have a few worse days of feeling “off” and some really horrible headaches. Had it not been for this forum, and people recommending to stick it out for six to eight weeks, I might have given up too soon.


#25

Also the drug doesn’t cure the underlying condition it’s lessening the experience of symptoms. You will still get sneak through symptoms on the drug but you should feel much better generally.


#26

Thank you Tinner!!! You have no idea what a relief this is for me to see this morning! I have done everything this week that the psycho neurologist suggested…tapered off the topirimate and the symptoms of course were way worse again, s I went right back up gradually of course. Better instantly!!! I’ve been doing VRT every day at home…no changes! It’s terrifying not having a doctor who can explain to you what you are experiencing is actually MAV and not something more serious, because it’s certainly not just vertigo. I have maybe a couple functional hours in a day which are still not what I consider clear headed, and then complete exhaustion sets in mental and physical. I’m so emotionally tired of being tired, and it’s scary!!! Is this what you all experience??? How long does this last? I’m going on two months :frowning:


#27

Thank you Dizzy!!! Your post has me in tears…between you and Tinner this morning I feel like there is hope. This week has had me feeling like this is going to be my life, and I can’t handle it!!! :frowning:


#28

You can handle it, believe me!! We are all stronger than we think. Just take it one day at a time and try to believe that tomorrow will be better than to-day…


#29

Sorry…I’m having weak moments lately. Just tired! Thank you …I will handle it. I have to for my family and for myself of course. My goal is to make myself stronger and healthier because of this. It will not take me down! I will never let stress get in my way again!!! Looking forward to better days :slight_smile:


#30

Don’t be sorry - we’ve all been there! Here’s to better days ahead!!:slight_smile:


#31

For me the condition has got lots better but I still have bad days but usually I just shrug ‘sheesh!’ and get on with things.

The most annoying thing about this condition is the medics STILL can’t explain what is really happening to you. They simply don’t know for sure what causes a vertigo attack and what is actually happening during one. Sheesh!


#32

Hang in there sweetheartsok! It will eventually get better (though as all of us know, it will never completely disappear unless they actually find the cause and a cure). Just remember that there are good days, and the bad days will pass. Also, don’t hesitate to be your own advocate, and do what you can to find and schedule an appointment with a physician that knows about this condition.


#33

Count me out. I will get better. So might you!

All MAV is is a symptom cluster. There could be a number of causes and many people may find symptoms resolve spontaneously over time.

I don’t believe migraine is the cause (24/7 fluctuations in tinnitus, ear pressure, pain and dizziness is a migraine?! Yeah right and I’m Abraham Lincoln!). I’m sure for many the cause is physical and migraine is one of the outcomes.

As I’m sure you’ve noticed ENT technology is a bit limited. They have only just developed a test for the presence of perilymph fluid in the middle ear (but this is only in pilot in Japan at the moment). They dont know yet what is happening during a vertigo attack (I’ll tell you: it’s fluid leaking into the middle ear causing movement of fluid in the labyrinth and associated sensations). They dont know what causes ‘fullness’ ( I’ll tell you: it’s perilymph fluid getting stuck in your eustachian tube because it’s blocked with ‘gunk’ probably dried blood)

I’m CERTAIN my ‘MAV’ is actually a fistula in combination with secondary hydrops and I’ve seen both huge improvements since day one (I’m currently on holiday) and exacerbations (like yesterday I got on my haunches to take a photo and immediately felt dizzier on standing back up (and remain so the morning after) - I’d just split it open again!). It all started with minor trauma to my ear. Yet I’ve been diagnosed with ‘MAV’. Go figure.

Don’t lose hope.

I have every belief that my condition will eventually heal but having a fistula heal is quite tricky due to the pressures involved, the complication of raised inner ear pressure and disturbance from day to day normal activity. It could easily take years.

And the reason why MAV may come back for some is that a fistula once present may represent an ongoing weakness that may breach again especially if ear pressure is elevated (as a result of the bodies reaction to the injury)

Here’s a ‘MAV’ recovery story to give you hope (it’s clear from described symptoms it’s ‘MAV’ as chronic labyrinthitis does not exist):

http://www.labyrinthitis.org.uk/isla.htm

PS I don’t believe surgery for fistula makes sense because it’s too easy for it to split open again so you are best to ride it out and let nature take its course


#34

I sure hope you are right, because I have had this on an off since a young age (14), and my daughter at the age of 10 has already had some similar symptoms (my grandmother had similar issues, and father does, too). I would love to know that someday it will resolve and not come back (I have had years where I have had absolutely no symptoms, but since hitting my 40s, it has been a regular battle).


#35

gosh that’s quite a family trend. That probably rules out disease. You can imagine some people having weaker membranes than others … have you noticed any exacerbation after physical activity of any kind and/or heavy sneazing/coughing?


#36

To answer your question, no, it doesn’t seem to be brought on by activity, in fact when I am less active it seems to get the better of me (I exercise several days a week - intense workouts, as well as spend time with my daughter and husband outside being active). It’s funny, until this last year, I would go years between episodes of vertigo (would have other symptoms that I now know can be attributed to ‘silent’ migraines), and when they did hit it was sometimes very sudden - generally when in a lying or head tilted position, or they would come on gradually over a few days waking me every night until a major episode hit. Each time they would say it was BPPV or a virus, and that I just needed to “wait it out”. That was until the last one which didn’t want to stop. Yes, given the family history, there is no way it is a passing disease, virus, or injury. I am just hoping that by the time my daughter is a bit older they will have made some progress toward understanding the cause and finding a solution.


#37

Absolutely. Glaucoma is treated very easily. Same should be the case with ear pressure.

Has your hearing remained largely stable over time?

I have a theory that ‘vertigo’, however unpleasant, is nature’s pressure valve in action and in most people helps avoid more damage.


#38

My hearing is fine, but I do occasionally have issues with pressure in my ears, pain, ringing and sometimes something weird happens that makes it sound like I am underwater, or I hear a weird whooshing sound. When I am really struggling with an episode, my head tends to feel full of pressure (sinus, ears, etc.) From what I have read on this forum and other sites that seems to be common for people diagnosed with MAV. Again, I agree with you that it should be treatable with something other than meds to suppress the symptoms (though that is basically what they do with migraines in general).


#39

Yes. Those are all classic MAV symptoms for sure. I get similar.


#40

Hi Sweetheartsok,

Mine first hit in 2010 and I received a MAV diagnosis in 2014. I manage with medication and lifestyle changes. I still struggle to accept it but know the signs and symptoms and when to give in or it will escalate. It’s a chronic thing unfortunately but there are good days and you learn to make adjustments for it. Sleep is crucial for me, loud noise and crowds are to be avoided. I keep a consistent routine and eat well as exercising regularly. I stopped feeling guilty about the need to rest some days and take that nap when my body tells me too.
I wish you well and hope you get some answers and relief soon.