Fritos are a weakness in our house.
https://www.gocomics.com/pearlsbeforeswine/2018/05/14
1 Like
Extremely interesting all this. My own jury is still out as to whether I have SEH or MAV. And then more recently I stumbled upon the possibility of āsimple focal epileptic seizuresā which are almost MAV but wearing different clothes. Many of the symptoms are the same particularly the triggers thereof and the ramifications. I suggest that many people who think they have MAV have epilepsy or sleep apnoea or meniereās etc. Thereās no definitive answer. And anxiety also plays a part because who wouldnāt be anxious when all this is unfolding? I myself was diagnosed with anxiety 25 years ago but I knew that I wasnāt really anxious and that there was more to it. Something came BEFORE the anxiety and it was probably MAV or mild seizures. Itās a fuckin nightmare thatās for sure.
1 Like
Yes, I have been diagnosed with VM 5 yrs ago. Treated it and it mostly went into remission. Then recent flare looked more like Menieres to my Neuro (especially since Iām still on migraine preventative and the diet), but ENT says with my attacks more like being on a rough ocean (not spinning continuous vertigo), and normal VNG, itās not menieres. Iām also finding I get pounding ears/head when standing up sometimes, and this can trigger the disequilibrium. This was thought to be my blood pressure, but it has been checked with symptoms, and isnāt the problem. I am beginning to wonder if it could be endocrine like someone else mentioned. In also getting hot flashes (Iām 50) an not on any hormone replacement (because it causes migraines lol). So who knows?
Yay! Cause Iām really having trouble with low sodium. And I ate all the sodium I wanted for 3yrs with no issue! I avoid almost all the known migraine food triggers, make almost everything myself, and going low sodium is just WAY too hard on top of that.
Anthony, I think youāre right. Maybe weāre all focused too much on trying to define what it is (MAV, seizures, SEH, Meniereās, etc.) when maybe theyāre really all just variations of the same thing.
I posted a list of drugs used for treating migraines in a thread the other day. There are over 100 drugs on the list, from at least a dozen different categories. The fact that a hundred different drugs can work against migraine says that there must either be a lot of variations of migraine, or else there are a lot of different brain chemicals at play and itās a matter of finding the right drug to correct the right brain chemical imbalance.
I also found it interesting in that list that there was this description for the anticonvulsant category:
NEURONAL STABILIZING AGENTS (antiseizure meds)
Many people call this class of medications āantiseizure medications.ā Actually, these meds are neuronal stabilizing agents. They work to stabilize the neuronal activity in the brain. Considering that Migraineurs have overactive neurons in the brain that, when a trigger is encountered, start firing in a wave and start a chain reaction that produces the symptoms of a Migraine attack, it makes sense to use them for Migraine prevention. These meds are only antiseizure meds when theyāre being used to prevent seizure activity.
I had never understood why someone would take an anti-seizure medicine for migraine. But this is a good explanation of why that class of drugs can work and now it makes more sense to me.
Keto diet was invented for epilepsy. It works wonders for migrane. @flutters vouches for it. Not surprising that antiseizure meds work for migraine.
Yep, I most certainly do.
Iāve also read that keto helps many with menieresā¦ Better than low sodium.
Keto by itself put me into remission last year. Then the fire season was epic thru September, and well, you know how that turned out.
Keto reduces my migraines from an average of 8/month to 2 - and only when Iām exposed to environmental triggers for a while. Thus far, it hasnāt handled the dizzies, hence Effexor.
1 Like
hi -
i think there are two theories here about what you have, VM and Hydrops. Both are clinical diagnoses and neither can be (currently) positively tested for and diagnosed (unless perhaps a super-powered high focus MRI can detect fluid pressure??).
so - i think itās a case of treating for whatās most likely to help.
any reason you canāt treat for both? - i.e. migraine prophylaxis and hydrops treatment (sodium avoidance + whatever else).
in my case, have been diagnosed with both, but i believe the migraine theory is more likely to account for my symptoms (i had increasing regular migraine attacks before the VM/MAV, and i had fleeting attacks of imblance/dizziness that i think were just too fleeting to be pressure-related - i canāt envisage a way the fluid pressure would change then normalise so rapidly i.e. in a few seconds). i had the whole fieldbook of other migraine symptoms from ataxia to photophobia to headache to aura to you name it.
treatments:
none of the hydrops treatments helped me one jot.
the two migraine prophylaxis treatments i am on have helped me tremendously.
hence - after 15 months of this MAV nonsense, i have reasonable confidence that migraine is the underlying condition. the explanation just fits with the presentation of the condition. i am now at more or less 80% recovery, and iām on pizotifen and gabapentin.thich is great 
compared to the mess i was in last year.
this may or may not be the same for other people.
itās interesting to note that my grandfather was diagnosed with Meniereās (when he was in his 50s) and spontaneously recovered after 2 years. i do wonder if heād have been diagnosed differently today.
2 Likes
Hi Gilabu,
I agree with you. I think each one knows more about their own body and illness and i also tend to believe mine is migraine related because of the manifestations.
I have a pet hobby(read obsession) and i note down recovery trajectory of people with this illness and migraine fits the trajectory more than anything else.
Also FWIW i spoke to some success story folks and guess what, all of them are migraineurs still but with vestibular symptoms gone.
just hope the audio 5h1t goes too, then I donāt care what you call it 
Sadly James, bearable tinnitus is a MAV gift we get to keep for life. Many have said the tinnitus is very bearable and does not bother them anymore.
Gah! Well mineās got easier to ignore for sure ā¦ but sometimes it can wake me up ā¦ now where is that strip of Ami ā¦ 
guess what my tinnitus disappeared for an hour and i missed it !! Call me crazy. I have it more times than not
1 Like
Doctors told me my problem ear was the right and Tinnitus told me hell with them cos it was constant in my leftā¦my tinnitus told me my problem ear ! It is more accurate than VNG testing !
Snap. My right ear complains occasionally too though!
You missed it!? You can have mine.
1 Like
Based on your notes of recovery trajectories, what do you make of those of us who seemed to recover for a few yrs, then relapse, all while still on migraine preventative all along?
three common trajectories
-
Progressively better
Acute at first, slow and steady getting better anywhere from 2 to 3 years. Then after that relapses far and few. happy life in the end and symptoms well managed ! (Mostly men in this bucket and some women too) -
Bell Curve of symptoms and managed by lifestyle
Vague dizziness at first. Completely able to ingore in the intial years. Anywhere from 3 to 10 years then symptoms become super bad and you scamper for meds. After that it becomes controlled and it ebbs and flows with acute and chronic phases and all over the map but managed by lifestyle. (Mostly Women and some men) -
Multi-year Symptoms with extensive remission between them
Had symptoms as a teenager some tilting, vague dizziness and sinus. Disappears all together then hits you hard as an adult for 2 years and disappears. Comes back again time to time. Zero symptoms in between attacks which can span years. (younger adults age 20 to 40). Some folks go into remission for years and never have problems come back.
2 Likes