Is this MAV? Clueless and need help

Hmm…I don’t really get any fluid sensation in my ears, no pain or pressure, just the ringing occasionally.

So when I play tennis for example and I bend to pick up the balls, then get up…I get lightheaded and weak. Would that fall under secondary hydrops symptom?

Possibly. Best you get a couple of opinions.

Hello everyone! Sorry, been a bit busy. I wanted to share about my visit at the doctor. I liked his approach, he took time to listen to me and asked follow-up questions. He did not rush through things as many docs do. As I was kind of expecting, he did say I have ‘vestibular migraines’. He told me to continue Topamax and increase it to 50 mg and stay on it for 1-2 months. I was also asked to keep track of my symptoms. I have attached 2 files form the visit.
He did not say to repeat the MRI. He based his diagnosis on the following:

-I have experienced migraine-like headaches and a migraine with aura
-I have responded to a migraine medication
-There is a history of migraines in the family
-Same symptoms recurring over the past 3 years with an MRI not showing anything

If any other symptoms start or things get complicated, he said we will reevaluate the diagnosis.

So, I’ve been on 37.5 mg of Topamax, don’t have the courage to go from 25 to 50 at one go. I’m very sensitive to meds. Starting on 25mg, I felt amazing after a few days. After taking the first dose of 37.5, I got more dizzy and experienced brain fog. This started slowly subsiding until today. All of a sudden I’m kind of back to square one…more dizzy and a bit off. How do these meds work? I was expecting things to gradually get better. Should I instead expect ‘good days’ and ‘bad days’? Or does this mean my body is better on 25 mg? Overall, I think I’m doing fine on Topamax. A bit of nausea is there, but manageable. I stopped craving alcohol, eat a bit less. Just the moment I started thinking that I’m getting my life back, the dizziness came back in full swing. Is it still the adjustment period?

Hello Aggie. I stopped at 25mg topiramate/topomax in two split doses because it worked immediately for me so I saw no point in increasing it even though doc had suggested upping it to 50mg. When I saw him he said he was happy I had such success with 25mg and to stay on that if it worked for me. So maybe 25mg is all you need too. There is no point in taking more than you need, personally I think that is counterproductive and much more likely to cause side effects. As my symptoms were so bad my neurologist has told me to stay on my meds for a minimum of two years and possibly for life, so I am happy to keep the dose as low as possible. I hope this helps you be brave enough to trust yourself too.

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Thanks a lot for sharing your experience! :slight_smile: I have actually not come across (on forums) many people who stay on 25 mg. I also wondered why everyone is upped to higher doses, even if they feel ok. Same thing happened to me on SSRIs. The feeling of dizziness stopped after 3 days of starting Topamax at 25 mg. After increasing the dose, I was expecting just maybe 3-4 days of feeling a bit worse and everything coming back to normal. Instead of this, am feeling slightly worse today and it’s been already 5 times I’ve taken Topamax at a higher dose. :grimacing: Just to add, I have not changed anything about my diet, exercising or daily routine this week. Everything has been same. Maybe I’ll e-mail my doctor or wait a few more days?

If you were doing well on 25mg why not go back down to that and see how you feel? It won’t do you any harm to do that unless you are on a mega dose in which case you would need to reduce it slowly, otherwise just go back and see what happens. I can see no point in waiting a few more days if 25mg was doing the trick. Sometimes we have to trust ourselves, the doctors afterall can only guide us but they don’t know how we actually feel so we have to take some responsibility for ourselves. Be brave, you have nothing to lose except feeling lousy!!:blush:

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Hahah I love the last sentence! :wink: I took 25mg + a tiny bit more last night, feeling slightly better. Getting back to just 25 tonight. Ohh do you or anyone else has this weird off feeling in the morning and gets better as the day progresses? My dizziness and brain fog are the worst in the first half of the day. I get much better in the afternoon and can do calculus in the evening. :stuck_out_tongue:

Oops, I also forgot to mention that I was told by the neurologist to do the Brandt-Daroff exercise 3 times a day. Let’s see! :wink:

Have a great weekend! :slight_smile:

I hope by Monday you are all singing and dancing! Good luck☺

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Hhahaha thanks a ton! :slight_smile: I’ll be posting regularly here, I love the fact that I have found a community of people who understand my symptoms. It’s sometimes difficult to explain these things to your loved ones or colleagues.

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Well, things have not turned out to be great…for some reason Sunday and Monday were pretty dizzy for me - mild dizziness but constant. I was expecting my body to love me for getting back to 25 mg of topamax then why is it rebelling? Today morning I was dizzy again at my tennis practice. It all made me feel pretty anxious…I took my SOS med (0.25 of clonotril) to calm myself down a bit. Once I get very anxious, the dizziness seems to get worse. oh my oh my…now what???

But of course, sadly anxiety will raise ear pressure, putting greater pressure on nerves and increase focus in the brain on this sensory mis-information. Double whammy. Which is why getting anxiety and stress under control is paramount.

Fluctuations in symptoms will happen. Just try to discipline yourself to accept and ride it. It will improve over time!

I agree with James but would also like to add that it is very early days for you and tennis is an incredibly balance demanding sport! I would have fallen over within two minutes. You have to allow the medication time to work and your poor brain time to heal and compensate before attempting something so exhausting and challenging as tennis. Walk before you run is the best way forward. Great as topiramate is for helping us you still need to respect the condition and remember to help your brain reboot gently. That is my take on the situation and how I got back to nearly normal, although I still would not attempt tennis!

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I do agree with you…I think I want to get better soon and it’s not going to happen. So I had been on topamax, 25 mg for around 2 months and things were great. I stopped it at some point thinking that it was my anemia causing these symptoms. This was before I was diagnosed with MAV. That’s why I thought I would not have major issues getting back on it again.

I just started learning playing tennis and I don’t push myself too much. The practice is not hard on my body but I do see how the head movement can make it worse. But then even same dizzy spells happen when I sit and work at my computer. You never know the time and place.

Yes, but there’s no harm in taking the fight to the condition :slight_smile: So long as you don’t injure yourself (which is a genuine risk admittedly). Have to agree, though, tennis is a big ask! :slight_smile:

Avoidance also has its psychological risks and constant physical activity aids compensation.

This is what I was wondering about…the fluctuations, the good and bad days. When I have a bad day after a few good days I start panicking. :frowning:

Try not to panic Aggie, it is the nature of the beast and you will learn to accept it without getting worried once you come to terms with that. Once topiramate kicks in again those dizzies will become a thing of the past so long as you don’t expect too much too soon.

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Yeah, once you’ve had two dozen ups and downs you begin to see the limits of the bad days and realise this thing ain’t gonna kill you so you begin to take it more on the chin. Your present anxiety is totally normal and understandable, we’ve been there, but this should improve significantly over time. I have not had any significant anxiety for months now. That’s in part psychological only, but also that my symptoms have very slowly improved. If ever I have a bad day now I tend to roll my eyes with boredom :smiley:

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Thanks for encouraging words guys! :slight_smile: Feels better! I’m calmer today and feeling better. It’s all about getting the attitude right and never fall into the anxiety trap. Once you’re there, everything flares up. I’ll keep you posted how things are going. :slight_smile: Have a great day!

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Hi everyone! :slight_smile: I hope you’re all doing fine. I’m not that great unfortunately…I was great for a month and after some travelling, weather changes and tiring trips, dizziness is back again. On top of it I had something like a panic attack with my heart pounding. I got echo done but my heart seems fine. Really not sure why all of this is back as Topamax was doing wonders to me. Have you experienced your medicine to just stop working or this might be my quite intensive lifestyle lately?

Oh no! Sorry to hear that Agata. Never got to the point of ‘stopped working’ but I did have a very bad relapse last year after being fairly good for 6 months. At that point I became sure my condition was not caused by migraine as despite the meds I had a vicious vestibular attack, one of the biggest I ever had.

I am soooo much better these days despite that attack though so always know you can get better again. In fact I’m the best I’ve been since this started.

Don’t worry you will climb back up!

I have a feeling this thing stabilises over a very long period, but you can surely have some big bumps in the road along the way.