Its really unbearable. Meds are doing nothing cant find something to ease this symptom. Do you know anything I can do to ease this symptom?
I dont want to create threads all the time so I eill ask here. Is it normal that I cant think properly, I forget things and I am not that observant any more?
Very common. Known as âBrain Fogâ. System struggling, you cannot think straight.
2 Likes
Since all started I am so slow on everything, even in the most simple stuff. Trying really hard to function.
Yes super common I think. I experience this a lot and its particularly bad when Iâm in a breakthru spell of headaches. My mum asked me last sunday what we did as a family on the Saturday⌠I couldnât remember, complete blank⌠I had to ask my 7 year old sonâŚ
I just accept it now and sometimes my kids tell people that they help me with my words⌠Usually when I canât think of a word quickly for an objectâŚ
Neuro told me it comes with migrane and meds too, nothing more sinister so try to find a way to recognise and acknowledge it, donât place your precious energy on worrying about it
Take care
4 Likes
The meds will eventually clear it. Mine did though like Nin, on a particularly bad day it can return. Iâve edited your title into the plural for you so now you can comment on any number of new symptoms on this single thread with impunity.
2 Likes
I have a strong feeling that all this happens because of my eyes. When the brain struggles to see a non âwobblyâ world or when he tries to make the eyes move properly when I move my head plus the dizziness that all this creates, there is no room for having a clear head.
1 Like
Be glad you did. That test is torture. And generally useless for MAV anyway.
I do believe there is hope eventually for a blood test if that cytokines research goes anywhere. It would be awfully nice to get out of the waste basket.
1 Like
Other way around, probably. Your brain is struggling and effecting your eyes. My vision is a total shitshow. Itâs all in my brain.
2 Likes
I cant really tell which is the start of this vicious circle. If I could find the start it would be a good start.
Youâre unlikely to find that bit of information, though you can drive yourself crazy in the trying. Try instead to accept the diagnosis and then search for a treatment protocol that works for you. That takes real perseverance and fortitude.
2 Likes
Same here, itâs all visual for me too. Better than it was, at the height of my symptoms I could barely function. I honestly donât know how I did, itâs amazing how strong you can be when you are forced to be. The meds have helped alot, but I still have distorted vision, my brain just needs to calm down and remember how it used to work before this! And Kon for ages I really struggled with my left eye, I felt like it was spinning in my head and it had nyatagmus worse than my right side, that is gone now. Rest assured you will improve in time.
1 Like
I am close to 3 months on meds and I am still the same. Yesterday I tried to use a pc, it was like I touched ot for the forst time and worse. The simpliest thing in my life was to operate a pc. If i was sick I could still play or browse stuff. Now my eyes are going crazy. I am really desperate. Also I went for a walk with a friend and I was feeling like I was drunk or on drugs. Couldnt think couldn do anything.
1 Like
Unfortunately, thatâs common. The recovery process from MAV is very slow - like a brain trauma such as stroke.
1 Like
I am feeling I am getting worse. An hour ago when I stood up from my couch I went outside to talk to phone and I saw the street lights when suddenly they moved left like crazy (like when you have nystagmus). This happened probably first time. And here comes my question how am I suppose to know if the meds I take are correct for me or if the doses are right when I need to take them for months?! I am really angry/desperate right now with this situation.
Sorry love. Even when the meds are right success is a 50% reduction. If youâve been on an effective dose (near the regular dose prescribed or the max dose) for a couple of months with no change then you might consider titrating back down and trying a new one or a combination. Personally, Iâm on med trial #5. Do the lifestyle changes, get away from screens as often as possible, install f.lux on all your devices, look up VRT exercises and give all that a month. Keep a journal. Healing is very slow and hard to recognize.
This has helped along with constant blue light blocking glasses !
1 Like
I am still on low doses and I even lowered ami cause I had some side effects sometimes (my eyes became really heavy and stiff, my vision became âslowerâ too). I am trying to stay away from screens but tbh I prefer to be on my phone than going outside with a lot of people. The other 50% is lifstyle? Or time? Also my doc never told me to increase any dose, not sure why.
That is weird. Do some searches here and read Dr. Timothy Hainâs page. You can find common MAV dosages.
My neurologist never told me to increase nortriptyline either âŚsame with neuro-otologist when he put me on zonegran. Both of them pretended to have me back in 6-8 weeks and see how I was doing. Not sure what your location is but in the States a lot of drs do that just so they keep putting money in the pockets 
âŚthank God the new neurologist told me to increase the Effexor dosage and to contact her whenever I was on double the dose to see how I was doing and for her to sent a prescription so I wouldnât have to be taking 2 pills