Is this MAV? Clueless and need help

Hello everyone! I’m new to the forum but have already read a lot and your issues seem to be similar to mine. :slight_smile:

I’m 31, from Poland been living in India for the past 6 years. I’ve always been the worrying type but as I get older, it seems to only be getting worse. I have been diagnosed with GAD by 2 psychiatrists and tried Cipralex, Zoloft and Clonazepam. Clonazepam seem to be the only effective med for me but it’s highly addictive and I keep it as an SOS drug, not taking it daily. I quit Cipralex some time back and Zoloft 11 days ago. I was on 25 mg of Zoloft. I take 0.25 of clonazepam when needed. My Mom was depressed and suffered from migraines (this probably matters).

I have visited so many doctors, from psychiatrists to neurologists and ENTs. The ENT performed tests and there doesn’t seem to be any issue with my ear. Neurologists prescribed Topamax, 25 mg once daily, saying I suffer from MAV. I took it for 2 months and recently quit (11 days ago) as I wanted to be off hardcore meds and my hair started to fall.

Feeling lost, I checked my blood for any deficiencies. I have iron deficiency disorder and been taking supplements for the past 5 weeks. I have more energy now, vertigo started subsiding but it’s back now, out of nowhere! :frowning: I was so happy thinking I have found the culprit but maybe it’s not the iron if vertigo is back again.

I wanted to ask what all tests you had done before blaming MAV. I can’t stop worrying that I have a serious illness and blaming anxiety/migraines. I had an MRI done 2 years ago, nothing. I regularly check my thyroid, vit D, calcium, magnesium, iron and vit B12. Currently, I only take supplements and no other meds but after quitting Topamax, I have already experience bad headaches.

Let me list all the symptoms I have:
-vertigo/dizziness (varies daily, it can be gone for a few days and then boom, comes back unexpectedly) There’s a bit of swaying, feeling off-balance. It’s not severe but I can feel it and it annoys me. Sometimes this feeling is with me the whole day, sometimes these are dizzy spells. This feeling intensifies when I move my head/eyes fast. Been like this for the past 5 months.

-ringing in one ear a few times a week

-neck and shoulders get stiff when I become anxious

-sensitive to light when I experience headaches. There’s also a bit of eye pain and nausea

-I get headaches a few times a month, not sure if they are migraines to be honest. Only once in my life I have experienced a migraine with aura. It was a horrible feeling, my hands got numb, I could not speak properly and was super dizzy afterwards.

-Brain fog and lack of focus (with iron supplements this has improved but I still seem to be a bit off)

-I sleep a lot, like 9hrs doesn’t seem to be enough

I have changed my lifestyle quite a bit - cut down on caffeine, alcohol, I eat more veggies and fruit, exercise 6-7 hrs a week, do yoga. I’m getting so fed up with these symptoms and don’t know what to do next. If you can relate to this or share some advice, please do. :slight_smile:

Agata

Agata, the problem is the tests ENT have dont seem to be sensitive enough to pick up the subtle problems in the ear that in my view cause MAV. I’m of the opinion that MAV is actually Secondary Hydrops: over pressure in the ear. It causes all the symptoms listed in MAV. Call it what you like but the outcome is the same. It’s something that is often temporary but can take years to settle down. I doubt you have anxiety, that is just a knock on symptom of ear trouble.

Yes, avoid the Benzo family of medicines. Have you tried Amitriptyline or Noritriptyline? They are also much kinder on you that SSRI’s

Thanks for the quick reply! :slight_smile: I have not tried these medications. Yes, I have a feeling the ENT’s work won’t help me much. What kind of tests should I go for? Could you suggest? I live in India, it’s tough to find good doctors to be honest. They’re all from private hospitals and money oriented.

I used to have panic attacks, always been super sensitive and easily disturbed. Migraine-like headaches started only 12-15 months back, never had major problems with this in the past.

I just wrote to my psychiatrist and told her what’s happening. She told me to get back on 25 mg of Topamax and recommended to see a neurologist. The two I have visited so far did not impress me, to say the least…

Topamax has its fans on this board. See how you go with that. Work your way through Dr Hains drug flowchart at bottom of link until you find something that’s the best compromise for you.

http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html

You will probably find the ear heals itself but it can take ages because of it being a fluid pressurised chamber.

We all want to search for answers though. I’ve done a mountain of reading of scientific papers but the best moment came when I met my surgeon in London who spoke my language. I could finally discuss all the technical things I’d learnt and was not fobbed off by the fanciful nonsense most ear doctors talk. It took me 1 year to find him.

Conservative treatment is the best (meds and time) as nearly all surgery for the ear is destructive and that which isn’t is unreliable.

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Thank you so much! I heard a lot of good about Topamax but the hair fall is so scary… :frowning:

What tests should I take to rule out other illnesses? Am I just panicking? As I said, I can’t stop worrying that it might be some nasty thing and I can’t diagnose it.

Hearing tests are worthwhile because surgery might be considered if hearing is deteriorating fast. If not leave well alone!! For most your hearing will not deteriorate. Mine got slightly worse but some of that may be reversible once you’ve healed.

Don’t anyone tell you you have an anxiety disorder. That’s just ignorant.

It takes a while to accept you have an ear problem and not to panic about it. Panic is quite understandable in meantime.

Consultations in India these days can even take as little time as 15 mins and they’re mostly focused on prescribing meds and expensive tests. The corporate world has entered medicine here.

I don’t have any hearing problems, just ringing in the ear once in a while. Other than that, nothing. Am more sensitive to light and patterns that noise/sounds.

Sensitivity to light and sound is indicative of an audiovestibular upset. Tinnitus is very likely to come from higher pressure. Be glad this is just occasional for you. I have tinnitus in bad ear 24/7!! (But there are periods it calms down to a minimal, ignorable hiss)

Some ‘do the diet’ which keeps ear pressure down. I just avoid alcohol and too much caffeine.

@Aggie My doctors did an MRI of the brain when I first started exhibiting symptoms. They weren’t expecting to find anything but they wanted to rule out anything serious like a tumor. I recently got another one done as I’ve had varying degrees of symptoms for 6 years now and they wanted to make sure nothing had changed in my brain. And all was still the same. :smile: You keep asking for tests. There are no actual tests to determine whether you have MAV, but the MRI will rule out any other life threatening conditions and perhaps put you more at ease.

I agree with James, don’t let the doctors “bully” you into thinking you have an anxiety disorder. It’s perfectly normal to be anxious with all of our bizarre symptoms. However I am seeing the importance of having some type of medicine to help with the anxiety the symptoms cause, and am battling my way to hopefully someday find the right one.

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Good point about MRI, Jess. I’d almost forgotten about that fairground ride!. But acoustic neuroma are extremely extremely rare so consider this test but don’t worry about it. It’s just that if you did have one its better to know about it sooner as it could save your life. Sounds dramatic but it’s just being practical.

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Thank you for the reply! :slight_smile: I got one MRI done 2 years ago and everything was fine. After a series of lab tests too, the neurologist said ‘migraines’. Then all was perfectly fine until about 5-6 months back. How often should an MRI be done for people displaying symptoms like ours? I don’t want to overdo on the tests front too much as unfortunately I have to pay for all of them here in India.

So what do the docs tell you? :slight_smile:

My psychiatrist recommended one neurologist (3rd one I’m going to see in the past 6 months) that I’m going to see this Friday. Let’s see what this one tells me.

I took 25mg Topamax last night, after a break. OMG, I almost fainted during my tennis practice this morning…felt weaker and more dizzy than before. How is it with MAV and physical exercising? I noticed I do ok during my yoga class but more cardio workout like tennis gives makes me lightheaded. It improves after I get some rest.

This is a mixed bag.

(forgive me from now on i’m going to assume I have both MAV and a fistula as I’m convinced MAV is just Secondary Hydrops which often accompanies a healing fistula).

I have managed to run 3 times a week for 5km almost my entire illness except when the migraines got really bad (which were subsequently quickly brought under control by Amitriptyline)

However, once I was certain I had a fistula I became much more careful with physical stance, avoiding bending down below waist (or at least with head held as high as possible when picking something up for example), washing hair in bath rather than over it and ensuring I never held in a sneeze. I sleep on a double pillow and try to avoid head falling over the side of it onto the bed when turning.

This seems to have paid off, but suspect there was some inevitable healing in any case, as no matter my strategy, the fluid sensation has decreased slowly over time, the whole time I’ve had this.

If you feel any fluid in your ears at any time I would not do anything which gives you head pressure. That would probably rule out Yoga. If you don’t have this sensation you might be fine.

If you are feeling more dizzy after an activity I’m not sure its doing you much good, stick to ones where you at least stay the same. More dizzy might mean you are exacerbating any leak: I had this many times when going onto haunches to take photos, I would get much dizzier for up to 24 hours. What I believe was happening was head pressure was pushing a volume of fluid out of my ear which would need to ‘fill up’ again before I felt back to average (I’m avoiding saying ‘back to normal’ as that suggests recovery). In tennis you would be doing a lot of bending down to pick up the ball. If you were to have a fistula I’d say that’s a big no no. You may well not have one, but its a risk. And no-one really knows what causes MAV, but my bet is its on a simple physical trauma that many aren’t aware of because it might even happen with a particularly bad cough or cold.

But in any case one thing is for sure: keeping active and not avoiding normal life is really good for you psychologically so please carry on getting out and being active!

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Thanks for sharing so much! :slight_smile: So on a ‘good day’, I can play tennis/do yoga and all seems great. However, on a ‘bad day’, I don’t seem to be focused, a bit lightheaded and getting tired quicker.
Fistula is a new thing for me in this department, the list of potential causes is getting longer. :slight_smile: I also suspect it may have something to do with blood circulation or blood pressure? As of now, I’m just really confused and tired of all the symptoms. It’s scary to wake up thinking that you have another ‘drunk’ day ‘on a boat’ ahead of you. :scream:

And yes, I do want to be active. I have put on some weight after zoloft plus I feel good after a physical activity.

@Aggie You’re welcome. Just a regular brain MRI to rule out anything dangerous. You already got that done so you should be good. Unless your doctor suspects something else to look for, especially in the head, i.e. blood flow and how the arteries get blood to the brain, you shouldn’t need any more MRIs. I’ve had a lot of neck pain, for example, which seems to make my dizziness worse. I know it’s the STM (a long neck muscle going from below the ear I believe into the collar bone-ish area, would have to look it up again) that gets all tight and can cause dizziness, not to mention mimics ear pain since it starts right up under the ear. Anyway my neurologist made me get a neck MRI too but my vertebrae were all straight & normal, as I suspected it’s muscular.

@turnitaround Thanks, I figured since an MRI was one of the first things the very first neurologist wanted to do for me it was important to mention. :slight_smile:

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No I don’t think its blood pressure, well its not blood pressure’s fault anyway. What happens with a fistula is the ear reacts to the leak by raising the pressure in the ear. Fistula’s tend to heal, so what happens is the pressure goes up. Eventually the pressure is so high the fluid is rammed right up against the blood supply so you start to hear whooshy pulsations that are the same rhythm as your heart. Your ear at this point can feel ‘full’, though not everyone gets that sensation. Some just feel a bit of ear pain or pressure. This causes me 24/7 tinnitus but normally its very forgettable. For me it was a very confusing set of significant symptoms. Some of the symptoms are caused by the leak, like the vertigo spinning and some of the imbalance, the rest, like light headedness are caused by the ear pressure. This ear pressure is known as secondary hydrops (not to be confused with menieres)

The reason I’m so suspicious about the underlying pathology of MAV is that the symptom set is exactly the same as for secondary hydrops. The treatment … is … .exactly the same. The triggers are … exactly the same … see a pattern? :smiley:

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As for testing, I underwent vestibular testing which eliminated the likelihood for menieres and vestibular neuritis. I feel your pain as your symptoms are very similar to mine, with a few exceptions. I have not yet tried any medications but hope to soon. It’s likely just MAV as you have had a visual aura migraine once (same) and now you seem to get migraine like headaches. Be weary of your neck as well. For me, I am unsure of my food triggers but I recognize stress/anxiety and hormone changes to be undeniable triggers. We are going to beat this thing! Keep the faith.

This may not even exist! A short bout of vestibular upset should now be called ‘acute vestibulopathy’ apparently. This omits the assumption of a cause In addition vestibular neuritis would have to be acute as you don’t have chronic viral attacks.

Hello and thank you for your reply. :slight_smile: I’m also unsure of the food triggers but definitely strong coffee contributes to the dizziness. I’m full of anxiety and that makes my muscles tight and I clench my teeth. How do you cope with everyday life? I’m tired of waking up everyday and thinking is it a good or a bad day for me? I often have to cancel plans last-minute because of the sudden dizzy spells.
Yes, I do hope we will beat this nasty thing! :stuck_out_tongue:

I feel so much more prepared and knowledgeable to see the neurologist tomorrow! :slight_smile:

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