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Neurologist says Every Doctor/Neuro is Wrong & it's not VM

#1

Basically wondering if I should abandon efforts of my previous neurologists (which is in line with Dr. Hain and other main dizzy and migraine doctors it seems) and go with new neurologist’s plans which also seem in line but a little outside of the box as well.

My new neurologist is Dr. Ansari the head headache doctor at UCSD neurology and he said my dizziness is not VM since I don’t have vertigo (the room isn’t spinning) but that I’m just dizzy and that I also have migraine and chronic daily headache (as I’m sensitive to light/smells/sound and get headaches daily). He thinks my dizziness is due to something else and is finishing up bloodwork to rule out an auto-immune disorder as I also have other symptoms like:

-chronic fatigue

-cacosmia

-polydipsia (along with excessive urination at night; I had a UTI at 28 and the urologist labeled it a random occurrence with no known cause but my neurologist finds that strange)

-tunnel vision (though I realized later that means I can’t see periphery at all so I just messaged my new neurologist to clarify that my periphery is just quite blurry and I see a small area in front of me and prism glasses open that vision up).

My new neurologist is splitting up the 200mg lamictal I normally take into 100mg in AM and PM (which is making me dizzier but I’m able to push through it and just deal) and the plan is to maybe try to increase that to 400mg and extended release or something. He said if my bloodwork (C3-4, IGEand such antibodies) is negative and I’m unable to deal with or respond to the lamictal changes, then we can try (assuming they get approved for me) injection of bilateral occipital nerve or frovatriptan (though he said it’s quite pricey) as I believe he said his clinic has found success with these two things with dizzy patients.

My previous neurologist had me continuing to take Aimovig (as I’ve been on it since June with no changes) while I try Botox as I’ve tried many types of preventatives and Dr. Hain and my previous neurologist see that as a next step. Though Dr. Hain’s chart seems to indicate to try either Botox or CGRP but he also seemed to say that he thinks CGRP does the same as Botox but that it hasn’t been proven.

My new neurologist said to stop both Botox and Aimovig since if Aimovig didn’t work in three months then it won’t work even if combined with Botox and that Botox hasn’t been proven other than a study founded by the Botox company and even if I tried it I would have to try it three times so nine months total so 6 more months for me). I feel bad giving up on botox as I already had a shot of it in mid december and my old neuroligst said to try another one in mid-march and then, three months after that, if there are still no changes then I can give up on Botox and Aimovig. Aimovig is free for me and Botox is only $193 for me but I guess I understand my new neurologist that Aimovig’s not worth the effort since I’ve been on it for 8 months with no results (and to get it out of my system in case I want to try other things), and that Botox hasn’t been proven outside of the one company-sponsored study.

I guess 8 years of neurologists/doctors thinking I had VM hasn’t worked so might as well go with the new neurologist’s ideas (given I believe they also have been proven to work with migraine from what I’ve read). My main problem is dizziness as I can deal with the migraine but the dizziness is just so tiring/annoying. I’ve had dizziness badly since 2011 a couple months after my PhD started, and the dizziness first started a couple months after I started undergrad in 2005 around the time I got a parasite I believe). I also tried SUMATRIPTAN SUCCINATE and IMITREX (6 MG/0.5ML) in 2012 with no results.

#2

mmhh interesting, I think several of us here do not experience true spinning. Could you describe your dizziness for us?
I am not sure what to tell you, seems that each doctor has its own protocol, so if you are going with this new one, you just have to stick to it. What made you look for another neuro?

#3

Go to 12 doctors, get 12 different diagnoses.

Personally, I think ruling out autoimmune causes are a good idea since you’ve failed some treatments and you have some very different additional symptoms. I would also perhaps ask about ruling out metabolic disorders.

As far as having to have vertigo in order for migraine to be causing your dizziness, that is up to the personal opinion of the doctors. I’ve had Dr’s who don’t believe in MAV at all, some who think all forms of dizziness can be caused from migraine, some who think the dizziness must be episodic to be migraine, etc, etc. I’ve been given the following diagnoses for my recurrent dizziness/tinnitus by different doctors: allergies, fibromyalgia, perimenopause, migraine, Menieres, trigeminal neuralgia, cluster headache variant, TMJD, anxiety, PPPD, depression, and cerviogenic dizziness/headache.

I think it’s good he’s looking for other things- I mean, that’s why we go to someone else- for a fresh set of eyes. Hopefully they find something, treat it, and we’re cured! No harm in second or tenth opinions. Just don’t take too far to heart these absolutes that the Dr’s tell you about dizziness and migraine because they are all basically THEORY-based, not fact-based. You know what they say about opinions…

I hope you find a treatable cause for your issues.

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#4

Assuming you sought out another consultant because of lack of progress after 8 years of trialling preventatives with the previous ones, perhaps you should be pleased with his different approach and new diagnosis. For you, This Might Just Be ‘It’. Your way forwards. Would seem daft not to run with it although, to really embrace it, you do need to be able to find it meaningful. I’d ssy it’s great he’s willing to try to find a root cause. That’s positive. I’d say it’s more than probable if he finds it it may be easier to sort than many chronic cases of MAV. Gook luck on your journey.

Be very interesting to know what criteria brought him to thus conclusion. I’ve often thought a migraine history/family connection could muddy the waters with MAV and wondered how differently one would be treated without it.

The neuro-otologist Who diagnosed me as having MAV was really top of his tree in his field so I felt what he said counted. He Said ‘migraine causes vertigo’ and went to great lengths to establish what type of dizziness I had. He even went so far as to say as He found I had three different types that each could well be indicative of different things, so your new consultant’s words make perfect sense to me. Helen

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#5

I don’t have spinning vertigo, it’s an up and down feeling like being on a boat in a very bad storm. I have been diagnosed with VM (or mav, it’s tge same thing) by 3 different neurologists. It doesn’t have to be spinning vertigo. In fact, it’s very common for it not to be spinning vertigo. There is lots of info available online stating that, the neuro who dismissed is basically misinformed. Chronic daily headache is an umbrella term for any type of chronic headache. It applies to migraine, cluster headaches etc. It isn’t a seperate diagnosis. It’s just a term applied to any headache you get daily.

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#6

I don’t know much about medication etc and Botox but what about the other migraine preventatives on Dr Hains flow chart, before Botox, I assume you’ve tried them and didn’t find they worked? The flow chart does suggest to re-evaluate the diagnosis if they don’t, maybe that’s what your neurologist is doing?

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#7

Wishing you well with all of those tests. I also think it’s well worth while to rule out other things.

Just for the record, I don’t have the spinning that many do have. It’s more like a computer screen scrolling over and over. But the diagnosis was still vestibular migraine. It seems that there is some variation between doctors about what our symptoms mean. I hope that they can get some clarity about what is making you unwell and get some relief soon.

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#8

Agreed. But, and appreciate how different people describe things differently, vertigo is ‘illusion of movement’ ?

which sounds like an illusion of movement to me. Helen

#9

I found it really hard to describe the dizziness /vertigo at the time - I just knew that everything was moving - wasn’t sure if it was me or the room. Walking was impossible as I couldn’t go in a straight line as my eyes were not sending the right messages to my brain. That’s when the vomiting started. Jan

#10

Moved to a new city and my dizziness is being drunk on a boat constantly. Head feels full and full of pressure including ears. it sucks haha

#11

I think you’re right and yes I tried many migraine preventatives. It seem Hain recommends botox &/or cgrp before reassessment but I guess since I tried a cgrp for 8 months that may be enough for a reassessment (especially since this current neurologist I’m seeing isn’t big on botox).

#12

similar to my symptoms… well, follow your new neuro protocol, and keep us posted. :slight_smile:

#13

Hey I’m new here just got an appointment with my neurologist moved up and I want to make sure to include the right symptoms as not to confuse him. Is feeling exhausted just from keeping your head upright related to inner ear/ vestibular?

Thanks
Scott Hinton

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#14

Hi Scott and welcome. An appointment with a neurologist is a good step if you are seeking answers to MAV. I wouldn’t worry too much about confusing him. Most neurologists have quite awesome mental capacities. He’s unlikely to get confused. Good idea to make a list of symptoms you associate with the condition and let him sort it out. As MAV is a diagnosis of exclusion it’s likely he will ask loads of questions and make copious notes which is a good sign. If he leaves you time to think about it it will probably be you that gets confused at the relevance of some of the questions. That doesn’t matter as long as he reaches a conclusion and puts a treatment plan in place. I found seeing my first neurologist an interesting experience. What a brain. He questioned, he recorded, he tested, he eliminated one condition totally and diagnosed me with MAV and suggested preventatives first and only time he ever saw me. As my Other Half said he did more for me in 45 minutes than all the previous doctors and consultants had done in over twelve years. So I hope you’ll be as lucky,

I’d say so and the resultant permanently stiff neck that usually goes with it. Helen

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#15

Hi @Scott_Hinton, welcome to Mvertigo. Yes, absolutely a common symptom is trouble with the neck / head. I actually got tremors along with it… like my muscles were not strong enough to hold my head upright and my head felt like it weighed 20lbs.
I assumed it was due to muplitle car accidents but now in retrospect understand it’s common in MAVers. Since being on Ami for 5 months, I no longer have those issues and tremor is gone too!

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#16

Hi there. Exhaustion is very common with MAV. Jot down everything else you can think of. The neurologist should ask you a lot of questions, but anything you can bring in will be helpful. They are used to dealing with a whole lot of information - sort of like panning for gold.

Wishing you well with your appointment.

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#17

Problem is I’ve only gotten to see my nuero 1 time in Jan, 3 months post taking a baby seat to the ear from a rear end collision. I have so many things she picked the top three at the time and scheduled an nuero/ENT for jun10!!! There’s 3 nueros in the state and 1 ENT for my problem. I lost 78% function in my left hemisphere. How do I prioritize or just jive her this page of problems again that’s lead to not being able to work or function for more that 2 hrs at a time lol on a good day!