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Another bad day


#1

Hi all, I hope everyone is having a decent day! I however am having a terrible time of it and I just seem to be getting worse. Took 10mg of Ami lastnight which was fine. Woke up today head/face/ear pressure, unsteady, eyes not working together feeling sickly too…
My friend came around for me to pop to the supermarket as I thought I had come around a little so thought this would be a good idea!!
NOPE! Came back sick as a dog with the motion in the car, dizzy head too unsteady to go up to my own toilet without help… ended in floods of tears. :frowning:

Im so fed up of this everyday and having a flare up and not knowing when it will end is really tipping me over the edge. Any coping tips would be most welcomed. I just keep thinking im going the same way as I did 2 years ago. I was basically house bound for weeks and couldn’t even make a cup for myself. My brother looked after me thankfully!! I am supposed to be visiting family down south over xmas… no chance of that the way im feeling :pensive::sob: xx


Upped the Ami on another bad day 😔
Day 7 of Ups and downs
#2

Oh no! Sorry to hear. It should get better when you up Ami to 20mg. That day can’t come soon enough I guess. Ami is particularly good at beating nausea into submission. Bash that MAV!


#3

Hi Mnek just sending words of support and encouragement:-) you’re going to get through this :slight_smile:


#4

Try to look at today as something totally independent of what tomorrow may bring you…
I remember day one on Ami, started out feeling amazing… then, by afternoon I had some strange things going on and absolutely tanked. Day 2 was nothing like day 1… hang in there!


#5

So sorry to hear that. Just coincidence. It would have happened anyway I guess. You never know the Ami might kick in a bit within a few more days. Just plod on for now. Soon as you feel able to suggest it would be good idea to really try to understand more about the condition. I find it helps remove the surprise and mystery and you feel more in control and we humans love that. Psychologically it’s so good for us. Please don’t think I’m being horrid or Know-It-All but I’ve been there many times and it used to take me by surprise too but, now don’t be cross with me, this morning you did about the worst thing you could do with acute MAV, and having told me only yesterday you are so light sensitive you wear dark glasses indoors. You went into a supermarket. That’s tons of triggers to wind up MAV. Remember trigger avoidance is one key component of the recovery package. That unfortunately was a red rag to a bull. Try to let things calm down by avoiding triggers. That’ll help tons, and speed recovery. You won’t get back to ‘two years ago’ once you understand MAV more so put that out of mind. Be kinder to yourself, keep on with the Ami, ask your friend to fetch shopping for now, and you will win. Honest. Helen


#6

@turnitaround thank you james, Im hoping so took my first 10mg last night so and nothing bad happened!! Thank god! Just a struggle today but i guess I did too much which didnt help!

@LucyLabrador thank you Lucy, your comment actually made me cry! Im not normally an emotional wrek but today im just consumed in the whirlwind that is MAV :pensive: xx


#7

@Onandon03 Hi Helen, I totally understand what you mean I was stupid I had like 15mins of feeling OK and I took the opportunity and ran with it like an idiot! Rest assured ive learned from today and wont be doing that again in a hurry.
I guess I just wanted to feel normal for a half hour, I should know better. Im not leaving this house for a while!!:triumph: thank you for your advise and dont worry I dont think your a know it all. I appreciated everyones comments and suggestions :kissing_heart::kissing_heart:


#8

@Naejohn now ive gotten over the fright of having the Ami I feel much more relaxed taking it. You guys really helped last night when I needed a bit of support so thank you in heaps :kissing_heart::kissing_heart:


#9

@Onandon03 Is there anything you can suggest I fill my time with whilst Im off work… the TV isnt too bad atm (with glasses) I cant read like this too much either and I want to do what you suggested I.E not triggering worse symptoms, ive had MAV over 8 years but I still dont really understand it. Any suggestions will help me lots :blush: also as I find im worse when I wake up until the aft… is there anything I can do whilst symptoms are at their peak?

:kissing_heart:


#10

Sorry to hear you’ve had a very bad day, we’ve all been there, today is just today and tomorrow is another new day so one day at a time. Any time I titrate up, I step back on activity for about 2 days till I get a handle on how meds will impact, it always improves so keep going and take it easy this evening x


#11

Go outside every day for a while. Don’t stay indoors. Best practice is a good walk. Be safe and choose somewhere not busy. Stick in quiet roads. Oh, there I go, again. Helen


#12

@nin Hi Elaine, thank you for your response, it is greatly appreciated :kissing_heart: well ive just managed to have a little something to eat albeit feeling sickly now. Anyway small triumph that I had enough of an appetite to bare eating! Hopefully tomorrow will be a better day! :two_hearts:


#13

@Onandon03 hopefully tomorrow will be a better day… maybe I will even have enough balance to take my little dog around the block :thinking: thank you for your tips :kissing_heart:


#14

I’m sorry it’s a hard day. You’re on a very low dose; it may well be that you need a higher dose and will need to withstand the start-up side effects for a while before you find relief. Just know that things will likely improve. And if they don’t, you can stop this drug and try another treatment path. There are always different things to try and you will definitely not feel the way you do now permanently.


#15

I used to be so bad when acute I could do nothing but lie down in darkened room, very still and listen to radio. I like Classical Music, or listen to those audio tapes. Depends how bad your vision is, sometimes picture books. Little text. Sort of books of illustrations. Oil paintings, or touristy travel scenes were OK. They don’t move. Could try adult colouring books too. Much depends on severity of condition. I went maybe nine months once, no screens at all of any kind, and regularly a week or ten days, and on and off months of iffy vision. Be OK one minute and then whoops! Vertigo. I used to relive holidays or day’s out sort of in mind’s eye. Easy for me because I’m a photographer and could mentally go through stills that I’d taken and stored on disc. All in my head, if you follow, and go for imaginary walks, rather imagine I was rewalking familiar walk, bit like you were giving someone else verbal directions to follow your path. ‘Well, you’ll know when you get to the next junction, there’s the very old cottage opposite with net curtains and the birdtable that’s attached to the weather vane with a cockeral on top’. Thinking a familar walk through. You must have those if you’ve a little dog at home. Anything to think yourself somewhere else but accepting in reality this is how it is for the moment but it will improve. Helen


#16

@Onandon03 Oh Helen what a lovely imaginary image… of course I could do that, this thing takes alot away from a person but memories I guess last forever :blush: well the day has l gotten better… just taken a shower with no slips or vertigo! Praise the lord :pray: and nearly time for Ami! Do you still do your photography? I am a Personal Trainer (part time) now as im not able to work for long periods in a strip lighted gym environment with moving machines thanks to my broken brain. You’ve prompted me to give meditation a try too… one of my friends is a Yoga instructor so I could absolutely do that. It may help with my anxiety and like you say… take me somewhere else. Well at least inside my own head.

:kissing_heart:


#17

@lsengara Hi Larissa,
Thank you for your kind words. I really hope so,its a terrible way to live but I do hear you and know it won’t last forever. Poorly brain :face_with_head_bandage:

Thank you :kissing_heart:


#18

No, my photography’s still on hold where it’s been for four years now. Outside which is where I like to work it’s impossible. I still need my eyes for balance rather than looking through long lens and tweaking camera settings and since MAV went chronic I walk with a stick so I’ve rather run out of hands! I’ve managed to record the growth of our latest dog from pup to adulthood but that’s about it. Helen


#19

Im sorry to read that Helen. I know how much it takes away from us but it is quite depressing not being able to do something that gives you so much joy, maybe one day you’ll be at a decent level of wellness to take it up again. I shall cross my fingers for you…


#20

Hi all, so today is the seventh day of being a recluse… still feeling pretty rubbish and I seem to be so emotional, Im trying to do little things like the washing and gentle pottering about the house to keep me going ( with sunglasses) yesterday I appeared to be more stable than today and my vision was better than today albeit the headache I got was quite something.

Today Im alot more unsteady, especially this morning, Im exhausted trying to keep my balance and feel sickly on and off. No really eating much. Its difficult to have a appetite when you feel like you’ve just stepped off the Pepsi Max! :nauseated_face:

Im trying to avoid triggers which is difficult as im not certain what they are. Ive tried to avoid the tv and limit time spent reading. Ive had a little wonder around my garden when I felt more steady. Any tips for a speedier recovery?

I feel im going stir crazy in the house :thinking::triumph:

:two_hearts: