Sorry for starting 2 different posts, but on two different topics. I am fighting for my job, but might end up losing it if I don’t go back in few months, so I am quite desperate. I did have 2 concussions but I have good reasons to suspect an MAV case triggered by these concussions. Long story short, here are my questions:
How long can a migraine episode last? Is it possible for it to stretch over 2+months after being triggered say by watching a movie or other triggers (which vary across people)?
For me, I can feel 90% OK as long as I don’t use my eyes too much and too close. If I am not working at all, completely avoid screens and paper, nor running or watching movies, I can be SURE to pretty much have good days with little symptoms. I have not tried but I am sure I can be sx free for months with this protocol. But once I get back to doing either of these my sx come back, and again, it takes little stimulation to have a terrible month. DOES THAT SOUND LIKE MAV?
Hi
It sounds like it could possibly be MAV to me. I have written on another post that if i were to lie in bed for the rest of my life with no stimuli i would NEVER feel ill!!! So yes its very possible. Are you taking any meds for it at all or visited your GP?
On this forum we have recently heard of alot of People who have suffered concussion, bad RTAs and other violent trauma and later, sometimes much later, developed MAV.
How long acute migraine attacks last: mine regularly 8 days in recent years but everybody’s different.
The after effects, increased hypersensitivity, that ensues post the acute attack I’ve found can last literally for years. I had an acute attack in December 2014. When it stopped after 8 days the dizziness that came with it stayed and I was dizzy 24/7 until meds began controlling it in Spring of this year, more than three and half years. Strong triggers still cause it to return and it can then last days. I read one theory that the preventative meds make the trigger threshold higher so eventually you don’t react so often or so severely to them.
If your MAV isn’t too severe and you aren’t chronic, 24/7 dizzy, and you can successfully avoid your triggers and they are known to you it could be possible to be able to be symptom free for 6 months. It would all depend how hyper-sensitive your system is as a result of the MAV attacks. I went totally symptom free between acute atracks for more than ten yrs when my MAV was episodic.
Thanks very much for the replies.
Onadon, which meds began controlling it? I would like to explore.
I honestly have tried Depakote and Topomax, and could not stay the course.
Depakote gave me increased nausea and unbearable fatigue. Topomax gave me SEVERE migraines and SEVERE suicidal ideation, I was reaching out to my Psy every day telling him I am not sure I can make it.
So him and neurologist pulled me off these drugs. I see similarities and differences with MAV The similarities are discussed above. The differences are that visual convergence (I have convergence insufficiency) is THE main trigger for my symptoms. Also, it seems that another difference is that small bumps on the head or neck can trigger a setback. Also, I don’t go through a longer period of ‘remission’. Never more than a week or two.
I’m not a medic. Just another sufferer. Not surprised you had to ditch those two drugs. They are pretty heavy and as the migraine spectrum makes us more med sensitive - more hyper-sensitivity - than the average bod, no surprise. Never taken them, just read about them but think they are regularly dumped by MAVers. Don’t worry. Guess the Powers That Be wanted to it it hard and fast. With MAV they generally start with the other two preventative drug types, either betablockers or antidepressants but it depends on comorbidity, age etc, etc. I take a betablocker, Propranolol, which is old, here since the 1960’s and regularly attempted to treat MAV. You’ll find lots of info on the Welcome section but best practice with all drugs is titrate up low and slow and be prepared to wait to see results. It’s months rather than weeks. 6-8 weeks before they really kick in, four months before you make drastic changes etc. Everybody starts off in a great hurry for results which is natural but remember too many quick changes/intros and you won’t know what’s helping with what or which is causing that side effect. Also it can be some time before you really know if a drug is/isn’t helping you…
Can I just ask couple of questions pls. You have been told this by an expert, a neuro-opthamologistt or similarly eminent bod I presume.
How do you acquire CI? As a result of MAV/trauma or were you born with it? Or don’t you know maybe?
Theory is ALL Symptoms produced by the MAV will cease if the preventatives effectively control the MAV. Theory again, (not mine, not that clever, the emminents) the preventatives work by increasing the trigger tolerance threshold.
It figures you don’t get long remissions. If CI is the main trigger, it’s hard to avoid extensively using yr eyes. We do it all the time. Chocolate, coffee or red wine would be a better option. If only we had a choice. Certain lighting conditions appear to be mine. It’s so much easier to avoid chocolate.
Knocks and bumps to the head. Alot of MAVers have touch sensitive skin. Sometimes I can’t bear to point of back of my head on the pillow.
Thanks so much for your response. I understand you are not a medic, but I can learn a lot from you guys.
Can I ask, what was the trigger for the accute attack on December 2014?
To me the trigger on October 2014 (3 months post-concussion) was movie binging on the plane.
I do have convergence insufficiency, not sure if I had it pre-concussion, but definitely it either started or got 100 times aggravated after my concussion (was tested by so many docs for this, the finding is consistentt). Some did suggest that MAV==>CI, but from my experience I can tell that the trigger is Convergence before a migraine sets in.
Really, the only reason why I feel I might have MAV is because the very long term effect of a trigger (again convergence or things involving screen and audio). This is not very common in post-concussion to see such a protracted response to a stimulus.
That is why your case is very eye opening to me. Not sure if anyone else has this protracted effects, or rather long term effects of a trigger/attack. Have you seen that with other sufferers on the forums, or did your docs say it is normal?
Trigger for the acute attack in Dec, 2014 was what now appears to be almost My Favourite Trigger a day-time meal out in a restaurant in mixed lighting. Can retrrospectively link maybe 90+ of my attacks in recent years to same and it’s not food triggers because I avoid red wine, MSG etc.
Lots of MAVers experience continual symptoms, ie 24/7 dizziness, protracted photophobia etc, etc. Of course this may be because triggers are constant I suppose. Some theorise the dizziness replaces a migraine headache and it could mean the migraine attack has never ended since the last acute attack. Who knows? How to work it out? Neurologist told me ‘migraine causes vertigo’ if that’s any help. Migraineurs are more sensitive to motion and visual stimuli even between attacks. Triggers can be cumulative.
Guess you’ve compared the MAV and CI symptoms. If you had always had CI shame you didn’t know. Might hv helped to know now. Something must hv changed - the concussion? - to exacerbate things and to start you hving migraines. Not everybody with CI has migraine/MAV. Lots wouldn’t;t know they had CI anyway. The brain does good job making up for it usually. If you haven’t seen one a neuro-otologist or neuro-opthamologist maybe? I don’t suppose the protracted response to stimuli is because of the CI itself? The eyes are so wired into the vestibular system any complication could stop it settling maybe,
Be a hard one to sort. As you are aware I’m sure there’s no definitive test for MAV. It’s a diagnosis of exclusion. Don’t see how they can exclude the CI. Must be contributory factor if nothing else surely.
Doctors don’t seem to really know much about MAV. Certainly not enough to give sufferes a list of what is and isn’t possible/probable/likely. Individuals vary so much, anything goes pretty much. It’s what’s ‘normal’ for you, or me rather than general. There is a consensus that MAV is umbrella term which covers a variety of vestibular conditions hence the variety in symptoms, mostly it’s still open to debate.
Thanks so much. You said "Triggers can be cumulative. That can be crucial, if I understand it right. Do you might that with every trigger/setback the situation can get worse and worse?
Because this is one thing I have that somehow people with PCS do not seem to have often. Their situation deteriorates with another concussion, but not a setback such as the one I described (binge watching movies).
With every set back I had, that always involved excessive convergence and visual stimuli, the worse my condition got. I went from being dizzy some of the time when I work, to not being able to work at all, not handling the screen.
Not sure whether I understood it correctly or whether I am misinterpreting? And if I am correct, is this your experience or/and what you have seen and heard from other sufferers?
I might have had CI before, but I did not get tested for it, I was just tested for it by many optometrist and neuro-ophtalomologists AFTER my concussion and the results were definitive, extreme CI.
Triggers can be cumulative. A strong trigger will bring on an attack sometimes immediately, sometimes later. 36 hrs seems to be my timescale. Food or wine generally much quicker. Sometimes a less strong trigger won’t trigger an attack but if you are exposed to several less strong triggers over a day or so they combine together to produce an attack, your explanation will also ‘work’, if one trigger makes the system sensitive then another comes along, it will ramp up the symptoms and possibly provoke an attack. With unstable migraine every trigger/setback can make things worse and worse. You’ve got it. I can tell you that from my own personal experience but I’m sure it wouldn’t be difficult to find others with MAV that agreed. Binge watching movies or any screen would be a trigger for me and many others with MAV. It’s termed Visual Vertigo which is a symptom of MAV. Lots of people on this site work long hours on computers. I can’t imagine that’s just total coincidence. There must be strong links in many cases although you have to remember the eyes and ears etc are all hard wired to the balance system so the sensitivity which produces the symptom could be coming from a few different parts not necessarily the eyes.
This statement could easily refer to a MAVer.
You write of your condition in the past tense. Has it now gone away? Or just not currently active.
I can’t think how to separate the two conditions out. They could easily be linked. I’ve read of people who developed severe CI post concussion or post trauma although like you they could have been born with it and the concussion ‘just’ made it worse and more noticeable. There are loads of people with CI who are never affected by it and probably live their whole life not even knowing they have it. It’s not regularly tested for unless problems are suspected. I doubt very much every MAVer has it but migraine must be caused by something, maybe CI is a cause in some cases.
You do get migraine? Have you thought about taking preventatives for it? Theory is preventatives should stop all symptoms coming from the migraine. Wouldn’t stop the CI but might reduce your brain’s sensitivity to the visual stimuli and therefore stop the migraine.
If you search Tamar Schwartz website ‘visiblepersoninvisibleproblem.blogspot.com you will find she has CI and MAV which in her case appeared suddenly after a migraine attack. I read it for a while some time back but warn you it’s depressing reading. She won’t try medication because she’s med. sensitive and she struggles through a very restrictive life.