I have cut out all food triggers and providing I have a good nights sleep, every day is almost identical. I wake up feeling almost completely normal for a short period then as the day progresses my symptoms get worse and worse until come the late afternoon/evening all I can do is lay down. If I go in a mall or supermarket at anytime during the day, that will immediately aggravate my symptoms and bring my crash on earlier.
Symptoms:
Spontaneous vision shift or lag (like the world just jumps quickly) these happen around 5-20 times a day. When they come they always make my whole body rush with adrenaline. Always triggered by an eye movement, turning a corner or a head movement. The worse I feel the more they come.
Pressure in back of head, spinal chord, joints. Feels like a magnet is pulling me down to the ground, and Iām very heavy, makes walking really laborious.
General lack of co-ordination, off-balance feeling like Iām being pulled to one side or something, hard to articulate.
Iāve had a diagnosis of MAV from one neurootologist and one that contradicted it from another, I managed to get over my symptoms before for 3 years naturally, Iām just skeptical and confused by everything. Can anyone relate to this or feel they have a better understanding of it. Dr S in UK seemed to be the only doctor who had any idea what was wrong with me but I just couldnāt help but feel he had put me in a one size fits all type package.
Simonw, that is the most concise and accurate description of my personal symptoms that I have seen to date! I have been āin remissionā now for almost a year, with only minor glitches now and again.
Iām not going to repeat my story - itās all around on the forumā¦suffice to say that I do not follow the diet (except for limiting caffeine in all forms) and I have never taken prescribed meds for the condition.
I have also replied under the threads, Scared and Is it really MAV, if you have any interest in my opinions.
Good Luck - and one size does NOT fit all!!
Thanks for this, I wouldnāt describe mine as attack though, it just seems to come on (often later in the day) and stay there. Kind of like carrying someone around on your shoulders, also feels like an invisible ghost shoving you gently in the back then pulling you again. Fun and games.
Interesting. I suspect the ultimate symptom has the same cause, but perhaps how you got there differs. I injured my ear and wonder if this āattackā was caused by a sudden drop in pressure from a leak via a lesion, once the pressure has dropped suffiently, the leak stops, but you are left with a deficit of perilymph leading to symptoms. Just my 10 cents. I am glad to report I have not had such an attack since the referenced post, but iāve had plenty of more mild attacks and periods of imbalance.
Its basically what I believe is the mechanism of āHydropsā (forget Meniereās in this discussion, its a special case of Hydrops).
The following is a mix of my understanding of the real anatomy, what Iāve heard from experts and my hypothesis, which is rarely talked about in detail in the doctors clinic:
A healthy inner ear contains two fluid in perfect balance, separated by a pretty flexible, compliant membrane - if you have an acute leak of perilymph (easy to do just have a head injury, e.g whiplash or a violent pressure change - this can happen as the bones of your middle ear punch your inner ear), you can be left with a deficit of perilymph and an increase in endolymph. The ear then tries to replace the perilymph but hits a point where the endolymph volume prevents replacement. Pressure increases and you must surely get various problems at this point - pressure goes high enough you may get breaches of fluid into middle ear and in any case you get varying pressure on all the neurons in the inner ear causing, presumably tinnitus and noise in the vestibular system - this ānoiseā in the vestibular system is what I personally believe causes the migraines until your brain gets used to this noise, or the noise abates as the over pressure eases as leaks get rarer and the fluids return towards balance (homeostasis). Some of the drugs, I believe, assist the brain to āhabituateā, by stopping the brain going into migraine mode at which point the adaptation process stops.
The initial acute injury is probably what is actually happening in what people name āvestibular neuritisā or ālabirythitisā - in other words these are probably not an issue with viruses - indeed these diagnoses are rarely used anymore by top experts and instead they call it āacute peripheral vestibulopathyā. This is all hypothetical because no-one has proved this in live patients afaik.
This is all very interesting. It makes me wonder if some day in the future they will be looking back on this disorder in the history books and sympathising with how primitive we were to have had next to no understanding of it. But if this effected say the majority of the general public, would there have been more progress alreadyā¦
Yeah, progress is pretty poor on the one hand, but at least there is a wide selection of conservative treatments available that simply helps you deal with it whilst nature takes its course.
I think the biggest problem is there is not enough known about the natural history of this thing to help reassure patients. I would have really benefitted from someone telling me I would definitely improve (and I have!)
btw, one other aspect to this - the day and night cycle - my model suggests there will be lower pressure in the morning usually and higher pressure by evening because when you recline in bed your head pressure goes up and this puts you at greater risk of leakage - the leakage then lowers the pressure. What is interesting is only a few people notice fluid in their middle ear, not everyone has this sensation, so iām wondering where the āover-pressureā is going ā¦
For all the things I am confused about when it comes to this, there is one thing I can set my watch by and thatās if Iāve had a good nights sleep I feel almost completely normal in the morning. As the day gets going and I start moving about more and more, I get worse and worse, come the evening its symptoms overload. This has to mean something.
Please see if you have any cervical rib or an elongated cervical C7 transverse process by a cervical x-ray. Please ask your doctor to write exactly what I have written because my elongated C7 transverse process was misread years ago. It can create cervical Vertebral Artery Insufficiency syndrome. Please see my Facebook page albums "Gracy Kalath ". I have posted a lot of information on dizziness. It may be helpful. Good luck!
i am the opposite. i nearly always feel worst in the morning and nearly always by the evening i feel almost normal. very rare for me to feel bad in the evening, but pretty much always feel strongest symptoms in the morning. if it is MAV then it is quite possible for migraine to be related to your body clock. some people with normal migraines get them like clockwork - every weekend, for example.
it may also be that the environment is triggering your attacks - mine used to get set off by almost anything i did what happens if you stay in bed??
See if you have any cervical rib or an elongated C7 transverse process by an x-ray? Please see my Facebook page albums "Gracy Kalath " for more information