I could have wrote this jess!!!
Me to a tee!!!
Jo x
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Exactly my point Jess. Everybody is different. Kon seems to think because you can do computers he should be able to as well and wonders whatās else is wrong with him cos he cannot. From what heās written I suspect heās much more akin to how I was than how you were. The worst one was the farther one has to improve to get bad to some sort of normality.
Bit off topic maybe though itās a weird symptom strangely enough I had this only last evening myself. Havenāt had it for ages. Maybe situation just hasnāt arisen. Iād forgotten all about it. It is explainable, Helen
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I realised something. For 2 days I have been testing my eyes and I saw (pretty sure but not 100%) that when I use my right only my vision bounces a bit when I look left or right, while when I use my left eye is still. Overall my right eye feels like a dollās one(they wobble up and down when you move the doll). So this is why I cant tolerate monitors probably. I am feeling like I am āblindā sometimes cause I do t remeber what I saw and I dont remember some details (lets say when you look a picture).
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I had a problem with one eye only. Itās VOR I bet. In my case it was my ear that was upsetting it. The eye itself was fine. 20mg of Ami later and the problem was controlled. You might need a higher dose.
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I guess I may need not sure though. When I use one ey only I can do everything track a scrolling fb page or text like before. The eyes are not working as a team.
May I ask, will ever the problem with supermakets, groceries ever go away? I never had a problem with crowded places even if I couldnt move at all from the crowd.
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I have no problem now.
I think this is a core MAV symptom, so the answer is same as āwhat is the prognosis of MAV?ā. That varies so much between individuals, depends what is causing your MAV and if youāve identified and treated it.
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Of course it will. As James says you need the right dose of meds for a sufficient time. Then it will gradually settle down. It will not happen suddenly. I usually OK these days but stil avoid on a bad day,. Trigger Avoidance is part of the package,
Nor did I. Ever. As the therapist said to me āthat is historyā, we have to deal with where we are at now.
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So lets say you find the right dose of the right med then you should gradually āexpsoseā yourself to the triggers, like on the VRT, or not? I have read in many sites that you should gradually expose to things that makes you uncomfortable so the brain can compansate.
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I would say you need to maintain that right dose until symptoms reduce/show positive signs of improvement, ideally they should stabilise but I can see you wonāt have enough patience to wait for that, before you start exposing yourself to triggers in hope of compensation taking place. I stopped VRT completely when very acute and was told by therapist once I had MAV diagnosis not to return until the migraine had totally stabilised and under total control by drugs. A situation in my case Iād say highly unlikely to ever happen but others are often luckier.
There are optimum times for recovery back to an established baseline after exposure to triggers beyond which the exposure is supposed to inhibit recovery rather than help it. I was told to spend 10 minutes in the supermarket, just walking, not shopping, then come out and for improvement I shouldnāt have worse symptoms for more than 15 minutes or something like that after coming out. I never could see how to achieve this. If there is a formula, I did not have it to hand. I didnāt have the therapist with me to advise. If itās that exact a science it needs strict supervision. I prefer to work on the theory the drugs gradually increase tolerance thresholds so your system isnāt so sensitive to everything and it is best to avoid triggers until then and once a stable baseline appears then try triggers bit at a time, Helen
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I cant accept that these meds increase tolerance naturally. I mean, well I am feeling a bit better when I am taking them but if I try to concetrate a bit on something I roll back or I feel more disconnected cause of their impact on nervous system and hormones. I want to ask something else which I cant understand. When I did the ENG doc said to move my eyes and head up down and left right, these moves did not makde me dizzy or feel uncomfortable but when I do them without the mask of ENG everything is f*cked up, why?
What they seem to do is hack the excitability of the brain. This dulls you a little bit but it stops the brain peaking out. Thatās how it felt to me anyway.
Thatās how I feel, too. Especially without them the needle is easier to peg.
Not ānaturallyā. They work by altering chemical levels in the brain itās believed. Yours are not doing that yet. You are only on the smallest doses and for a very short time. Treatment for you is barely started. It can take months. Donāt let your present experience influence your thinking. Meds can and do increase tolerance thresholds. Iāve watched it happen to me.
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What about the thing with the ENG mask?
The tests are not identical. The difference may involve the mask. A closed in mask would ensure even and consistent light during the movements. Without the mask your eyes could be receiving varying levels of light with the movement and they are reacting to subtle light changes rather than the movement. Just my guess.
Well thats what I was thinking. When my eyes are close or everything I see is black the dizziness is less.
So you are currently very light sensitive. Therefore certain sorts of light will be triggers. You can watch out to identify them. Often for many people light triggers might include: flashing lights, blue light (phones, computer screens etc), fluorescent light, bright sunshine, lights reflected iff if shiny household items like stainless steel and A big one for many, Contrast sensitivity (remember those dancing street lights in the dark outside), looking at your phone in the dark, things like that. Amitriptyline and beta blockers are supposed to be the two best preventatives to control light sensitivity.
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Currently I drove at night and I am on a cafeteria and I feel my legs heavy af and my eyes are wobbly and everything goes side to side., I am gonna cry cant take it anymore.
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Cry if you need to but donāt give up. You need to recognize MAV is an endurance race. Get out of the sprinting mentality. This is a traumatic brain injury experience. Healing takes lots of time. But healing is possible. You will feel better.
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