24/7 symptoms and to-and-fro vertigo, who else? Need feedback

Hi all,

I’m new here. I’ve been diagnosed with Vestibular Migraine… but the neurologist who diagnosed me doesn’t believe it has become chronic, because I’ve only experienced ROTARY (spinning) vertigo about 3-4 times now, months apart. Because the frequency of THIS presentation is too low, he refuses to put me on prophylaxis medication. :disappointed:

However, about 1-3 times per week I have quite severe TO-AND-FRO vertigo. This on top of my 24/7 sense of imbalance/disequillibrium (slight rocking sensation). The to-and-fro vertigo mostly develops after working on a computer under fluorescent lighting for some time… but also being in a room with bright artificial lights has triggered it, as well as the cinema (large moving images with loud noise).

With the to-and-fro vertigo often comes a heavy head feeling, occipital headache or neck pain (or everything at once!), head motion induced dizziness, tinnitus and sometimes nausea. I have episodes of “head pressure” on most days (not real headache, but like my head’s in a vice), and also photophobia and phonophobia.
About once a week I seem to have aura (objects in my periferal vision seem to vibrate). Sometimes my memory is affected and I have trouble thinking. Currently I also experience a moderate one-sided headache about twice a month (migraine headache?).

My life is totally controlled (ruined) by these symptoms. I know from medical research that about 35% of people with MAV experience to-and-fro vertigo, not (always) spinning vertigo… but the neurologist held on to his belief that a MAV-attack MUST mean “spinning vertigo”. End of story. :expressionless:

He seemed to suggest that my current symptoms (lasting months after two spinning vertigo attacks a few months ago) are due to Chronic Subjective Dizziness. I disagree, because suboccipital pain, frequent head pressure, tinnitus and aura are not symptoms of CSD, nor is severe to-and-fro vertigo that is triggered by fluorescent light!

I definately want to go on preventative medication… I know it’s the only way for me to sufficiently raise my trigger threshold and finally end this non-stop migraineous state my brain is currently in.
So, I’m going to look for a neurologist who is open to other information/knowlegde than his own. *wish me luck! *

It would help to hear from people who also experience 24/7 symptoms/ frequent to-and-fro vertigo… and who were helped by medication.

I know I’m not alone in this, so please share your experience!

Many thanks in advance! :kissing_heart:

Lisa

Lisa,

Two things in common here:

  1. My neurologist placed the bar for medicine in a similar place … difference for me was I was actually getting full-on MAV attacks/migraines every two three days for a period of about a month … so I went on meds at this point (this was about 6 months into my full on ‘MAV’ chronic phase)

  2. I agree with you that you might get relief from meds generally. My 24/7 dizziness decreased loads from 10mg Ami, then most of it went including the nausea at 20mg. Its definitely not just helpful for the attacks. 10mg eliminated visual rocking, but I’ve had plenty of bouts of two and fro sensation since but its been much reduced. 20mg also allowed me to use the computer or watch TV again for an unlimited time.

Now one thing to bear in mind, I personally don’t think MAV is caused by migraine, you can read my opinions about this elsewhere, but the prophylaxis medicine definitely helps reduce 24/7 symptoms AND does so very quickly if you hit the right one (for me I started feeling better almost immediately). I think CSD is a load of ENT/neurologist baloney too btw.

My experience has been that vestibular attacks can happen even with the medicine, but the medicine helps reduce the ferocity of the attacks, mainly removing the migraine element (but unfortunately in my experience the attacks are more than just a migraine). I suspect this is because it softens the link between inner ear signals and eye movement via a reduction in neurotransmitters. This can reduce/eliminate nystagmus which then reduces your motion sickness and helps eliminate the emergence of a migraine.

Either keep demanding or request from your general practitioner. The doses of eg Amitriptyline required are very low and its a very standard med.

Take a look at the drug trial flowchart, you could even share with local GP:

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

Take a look at Hain’s page on drugs for vertigo:

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Best of Luck!

James

I have been diagnosed with MAV. I had to have a MRI and do a balance test which involved following a red dot of light with my eyes, banging a hammer on my forehead and also flushing warm water through my ears as well as asking questions about how many times I had gone to ER and describing my vertigo attacks in the previous 12 months .Also had to do a hearing test. An ENT specialist in Newcastle NSW Australia confirmed the MAV diagnosis. I had no idea you could get a migraine of the ear. Maybe request a balance test and MRI to rule out any other causes. Goodluck

Sarah, it’s definitely not just a migraine imho, the name is misleading. The migraine element is in the brain though. Many ear conditions can give you a migraine.

James

I had always thought a migraine was associated with a bad headache. I once saw my step father have a cluster migraine and he was vomiting in the shower and in excruciating pain and I begged my mother to call an ambulance. I thought he was going to die. She calmly told me it was a migraine and gave him a shot with a needle after he got out of the shower. Never ever thought migraine of the ear could be responsible for chronic and diziness

That’s because it isn’t. IMHO it’s medical dogma exacerbated by many taking the name too literally. MAV is a class of condition defined by a set of symptoms. The migraine and other neurological symptoms are a big feature of MAV but it’s far from the whole story. I link to my full opinion piece above.

Hi James,

Thanks for your nice reply! :slight_smile:

I found an article that I believe explains what my problem is (why I don’t recover from the dizziness/imbalance)…

Dr Andy Dowson, director of Headache Services at King’s College Hospital in London:

As well as vertigo, patients may suffer other symptoms. Mr Selvadurai says: ‘They will feel constantly off-balance, may complain their brain feels foggy and may have an aversion to light, sound or, in rarer cases, smells.

‘Once the vertigo happens, the body’s balance system needs to reset itself, which can take weeks or months.

'Generally, the younger and fitter you are the quicker this happens because the more active you are, the more the body works at resetting the balance system.

‘However, if patients are getting migraine-related vertigo attacks every few weeks or more, then the balance system never gets an opportunity to do this.

I believe I can only end this cycle if I can stop the acute attacks… then finally my brain will finds its normal balance again and the 24/7 symptoms will go away. I also think my brain has become hypersensitive to stimuli, because of stress caused by this condition.

I think I will ask my GP for Amitriptyline. I hope this med will a. calm my brain, and b. prevent MAV attacks, so I become symptom-free.

I’m a bit scared to start ami though. I’ve read that some people found it increased their dizziness initially. I cannot afford to miss a day (or more) from work right now.
If I start I’ll start with 5 mg only, over the weekend… then 10, then 15, then 20. If side effects are too much I’ll stay on the dosage that doesn’t cause problems, and wait a month until I can take a few extra days off.

That’s the plan.
Now I hope I can execute it.

Lisa, to be frank no-one really knows EXACTLY what is going on yet (and no, not even the Daily Mail! :D).

However, I personally believe that yes, you are right, the medicine works by reducing the stress on the brain, which not only helps avoid the migraines, but reduces the 24/7 dizziness too.

HOWEVER, I believe we are mistaken to believe this is the whole story. Your brain does not just switch one day from being normal to hyper-sensitive. The neurological story is NOT the whole story.

There HAS to be an underlying injury or lesion somewhere in the vestibular system that has occured at some point and THIS is what has lead to this condition coming on. I also believe this is an UNSTABLE lesion where MAV is concerned, as otherwise the brain would compensate within weeks - yet MAV sufferers often suffer for YEARS! There are other obvious indications of instability in many sufferers, like variable levels of tinnitus, incredibly variable levels of dizziness from day to day and countless unexplained relapses.

Feel free to read my opinion piece, I’m not going to rant on again, but this whole topic turns into an awful mess of almost religious belief in things we simply cannot know for sure, because, rather unbelievably (this is 2017 afterall), ENT medicine simply ISN’T very advanced - just as a VERY simple example - no-one knows what is happening in a vertigo attack. I have my own theories, others have different ones, but that’s pretty poor given how common a vestibular attack is!

Its just a darn good thing we have quite effective protocols to help people feel better and get their lives back, but I hope one day we will have better therapies that don’t just target the brain and better address the root cause which we are missing at present.

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