New and scared ...Menieres or MAV?

New here, let me introduce myself šŸ¤
1

Hi everybody, my name is Diana, Iā€™m 30, from the US, have 2 kids (which makes this even harder) and Iā€™m now part of this rocky ship.

Hereā€™s the background:
-i was diagnosed with migraines with no aura in 2014, they are the typical ā€œpain on one side of head that get better with imitrexā€ type of migraines and usually only get them during or right before my period.
-early 2016 I started having this weird swaying feeling only when I stayed too still, went to the dr, all test came back normal and by the time my dr thought of sending me to a specialist the feeling has gone away so nothing wa done.
-August 2017 started having ringing in my ears sometimes accompanied with clogged feeling, was prescribed nasal allergy spray but that didnā€™t do much
-December 2017 the swaying, rocking feeling came back and was sent to the ent, as soon as I said I had migraines she got fixed on the fact that it was my migraines causing it and told me to find a neurologist, in the mean time sent me to vestibular rehabilitation which helped and the swaying feeling went away
-February 2018 stablished care with a neurologist who ordered MRI which came back clear of any abnormalities, he didnā€™t seem too concerned about my migraines since they seemed to be hormonal but still started me on prevention medicine (trokendi) ā€¦it gave me bad acid reflux so I stopped it
-rest of 2018 went normal when it came to migraines and balance problems but was diagnosed with severe endometriosis after emergency surgery (telling this cause is kinda relevant) and in July 2018 I got the mirena iud, after the mirena I started getting more migraines but they assured me it was my body getting used to it and since it started working so well for the endometriosis issues Iā€™ve stuck with it.
-December 2018 the swaying rocking sensation comes back, this time itā€™s not only when I stay still, I can feel constantly through the day no matter what Iā€™m doing and the only thing that seems to help is driving (weird) ā€¦I go back to the ent and she order a VNG, hearing test and more vestibular therapy.
Thw hearing test showed no loss, The VNG results were very confusing or at least the way that she explained them to me was, she said I showed problems in two variations (I swear this is how she explained it) and that one of them was mostly because of my migraines and the other variation was because of inner ear problems, my mistake was getting scared and not scaring for clarification.

So hereā€™s the current problem, the migraines are only getting worse to the point of going to the ER 5 times back in February-March because of the unmanageable pain, I had a ct scan done, blood work and even a spinal tap and everything came back normal, my neurologist started me on aimovig injection but itā€™s only being 3 weeks so I cant tell yet if itā€™s going to work, I have an appt at the end of April with my Gyno and Iā€™m gonna ask her to get the mirena out, BUT the balance problem hasnā€™t resolved since December, Iā€™m always swaying and rocking, sometimes it feels worse than others but the feeling is ALWAYS there. Last week I went back to the see the ENT cause now Iā€™m having ringing in my ears again and since those bad migraine episodes in March Iā€™ve been feeling pressure in my ears and she told me it could be a variation of Menieres and again told me about the variations that the VNG showed but didnā€™t go into detail, told me to start Valtrex to see if that helped but only gave me 20 pills and for what Iā€™ve seen here I would need way more than that.

Iā€™m more confused than ever after that last visit, I did some research since I donā€™t feel like sheā€™s the dr for me and now I have an appt at the Tampa bay hearing and balance center which has really good reviews but as of right now Iā€™m just so scared, my mom hasnā€™t Menieres and Iā€™ve seen her suffer, Iā€™m always so anxious waiting for the bad vertigo attacks like the ones she gets but to be honest the only time I was spinning was when I had the VNG done and they put the hot air in my ears (I knock on wood and hope to never be as dizzy as that thing made me) ā€¦

I lost track of everything I wrote . I donā€™t even know what my question is, but what do you guys think, with your experience does this sound like a ā€œvariation of Menieresā€ like she said or does this sound more like MAV.

2 Likes
2

Hey Welcome Diana! Sorry to hear of all the trouble you are having, several of us also have kids on here. I have a 3 year old. It sounds more like MAV because of your migraine past and the fact that you donā€™t have fluctuating hearing loss or any vertigo. But criteria many times overlaps with other conditions, itā€™s hard to know. My grandma and my mom have had classic meneirs, but based on my symptoms I think Iā€™m closer to MAV. The good thing is that MAV/meiners treatments are similar, both require proper diet and removal of caffeine.

I think you will find the migraine survival guide very helpful:
https://www.mvertigo.org/t/vestibular-migraine-survival-guide-2014/2244/4

During my worst I always found driving was the best activity too! And yes, I would sway and rock around all the time, and yes it was always worse when I was standing still or slowly walking. Many of us on here are ā€œrockersā€ with no vertigo. I have a little bit left, but its mostly gone. I also went to the ER once, but it was probably more panic-related than headache.

The biggest helpers overall for me (in no particular order):

  1. Lifestyle change (work less + walk/meditate/family more) and migraine-specific diet.
  2. Counseling/Psych help
  3. Amitriptyline
  4. CBD oil
  5. Cefaly device in preventative mode 20min per day. But for you it might actually help as an acute treatment as well.

I really think it took all of the above consistently to get better. I didnā€™t get much better with VRT, but sometimes I felt it was helpful. Oh and sleep was a big problem for me, so I got enrolled in a CBT-I course to help with that. Do you have any sleep issues?

Anyways I hope the Aimovig starts helping you soon! But I would consider trying something like Amitriptyline too if you donā€™t see much results from Aimovig in the next few weeks. Amitriptyline + CBD oil has really calmed my anxiety, and treating anxiety with MAV is about as important as treating the migraines.

3 Likes
3

Not being medical professionals here, we canā€™t diagnose you but one thing i know is that for a meniereā€™s diagnosis you need some degree of hearing loss (intimitant or constant) and spinning vertigo, not the rocking dizziness you describe (that i also have). I have 24/7 symptoms so itā€™s never been considered meniereā€™s for me but meniereā€™s needs to come in attacks. Since you have a history of migraine iā€™d be more inclined to believe its mav but iā€™m not a doctor. How often do you have attacks?

Good luck with your appointment. If it doesnā€™t bring answers, definitely see a neurologist or even better, a neuro-otologist. You may need to see one to treat MAV anyway. ENTs donā€™t usually know how to treat it.

4 Likes
4

Hi Diana and welcome. Sorry to hear about your suffering. Youā€™ll find lots of helpful information on this website, and lots of support. Iā€™ve found it a lifeline during this difficult time.
Like you Iā€™m a ā€œrockerā€: no spinning vertigo but 24/7 instability and rocking inside, which Iā€™ve had for ten months. Like you, I feel better while driving (and cycling and swimming; I love the feeling of freedom it gives me). I have pressure headaches as well. I have a 4 year old and am a single mum as my marriage broke down 6 months into this illness. I can relate to how hard being dizzy is while looking after active children.
One thing Iā€™ve learned from reading this website is that a migraine preventative med can be helpful. Amitriptyline seems to be mentioned often; Iā€™m on nortriptyline, similar med. the important thing is to build up dosage slowly and persevere for a long time as it takes time for the meds to have an effect.
Wishing you a good recovery. Hang in there :slight_smile:

3 Likes
5

I agree with everything @MissMigraine writes. We arenā€™t doctors so cannot offer diagnosis Iā€™m afraid. It is possible to have Menieres and MAV and of course no doubt itā€™s possible for Menieres sufferers to jusy happen to be migraineurs also, so it can all muddy the waters when it comes to getting a diagnosis. Menieres is much less common than MAV in the general population. VM/MAV/MIgraine tend to run in families. I suspect Menieres does too. As youā€™ve now got an appointment booked with a specialist clinic I shouldnā€™t worry about previous medical appointments, go with what they say and make sure you ask the questions that are bothering you. Good luck. Thought the attached may help you. Helen

https://www.ean.org/fileadmin/user_upload/Tarnutzer_vm_vs_MD_ean_2018_v1.pdf

3 Likes
6

Diana welcome to the forum. A lot of us have gone through exactly the same uncertainty. Unfortunately itā€™s part of the condition to some extent. Sorry you are going through that too.

2 Likes
7

Welcome to the forum, Diana. I hope that you get some clarity soon about what causes your symptoms. I have a friend with meniereā€™s; I know by observation that it is nasty. :frowning:

I hope that we can be a good support for you.

2 Likes
8

Fellow rocker and mom of a toddler here. I suscribe what others have said, I would add to ask about the mirena and see if that helps spacing the migraines. Youā€™ll get better.

3 Likes
9

I think youā€™re going to be in good hands at the Tampa Bay Hearing & Balance Center. I had looked at their website when I was researching doctors (Iā€™m south of Tampa).

2 Likes
10

@Manatee I hope so, Thursday canā€™t come quick enough.

Iā€™ll be sure to update as soon as I get out of the appt

1 Like
11

Hi Diana,
I was diagnosed with MAV, and after several days of spinning, it settled into months of rocking with a relapse. I also feel relief with driving and fast movement. To get chores done, I would pace side to side quickly with a rigid posture to avoid the rocking sensation. Propranolol and topiramate gave me quite a bit of relief, but what has really made all the difference is the Botox. I now only get brief dizzy spells and I use to suffer intensely from ear pressure and tinnitus, but the Botox really provided an immense relief. I also use to have the classic migraine before this. I had many ear symptoms, but my VNG test came up negative, as well as the MRI.
I wish you the best of luck, and I hope you can find a neurologist willing to try the Botox with you. My first treatment did provoke a migraine that lasted three weeks, but I would do it again, it was worth it. The meds never addressed my discomfort with my ears.

12

Hi Redcello. Rather interrupting on anitherā€™s thread here but glad to hear of your Botox success and wondering if you could make time to write up your diary ā€˜for the recordā€™. Botox for MAV seems pretty new and it could help others thinking on those lines. Helen

2 Likes
13

Hi @Redcello thanks for the info, I know my neurologist does Botox at his place but hasnā€™t mentioned it to me yet, wait he mentioned once a nerve blocker shot, is that what he meant? Lol

14

Update kinda, today I saw my gynecologist for my annual pap but as soon as I mentioned her whatā€™s been happening she agreed on taking a break from the mirena iud to see if thatā€™s contributing to everything and took it out right on the spot ā€¦she said sheā€™ll only give me 6 weeks without hormones since I have endometriosis that tends to grow pretty quick and that weā€™ll talk about more options then.

Hoping that this helps me even a little. Headaches have been horrible for the past 7 days and now Iā€™m having ear pain as well sometimes

16

I feel for you. Weve all been i that situation and alot of us still are. But be strong. Try not to wait for the episode to happen. Try and keep moving. I know its hard to and thats when you feel the symptoms but you have to get strength and try to train the brain to deal with the ear effected.
Did you say you mum has or had menieres? Have you had any head trauma previously ? X

17

Botox and Nerve Blocks are two different things. Both possible alternatives to treat MAV but different. To the layman, like me, they seem as if they must work in a similar fashion but they are different. I have no personal experience of either but there are people in here who do and if you use the Search facility you can pick up all relevant posts which may help. People now seem to be getting some good results with Botox from what Iā€™ve read on here. Helen

18

I tried the nerve block. It consists of an injection into the two bumps at back of the scalp near the neck. Itā€™s called an Occipital nerve block. Lots of info on it online. The NHS headache clinic I went to tries this first and only authorises Botox if 3 meds have failed.

Good luck

1 Like
19

Hi Diana,
A nerve blocker is different. My neurologist also offered that to me, but I only wanted to try one thing at a time. I also was considering the nerve block when I first had the Botox and it triggered a painful migraine that lasted for three weeks.