after a few days where i was starting to feel a little better… even to the point I felt more comfortable standing still without so many sensations of movement,
today has been horrible. I have felt as unbalanced as I ever have since the start of all of this crap. I have felt unsteady to the point where I felt like I might actually fall!
In the past the sensations have always been there but ive known i wouldn’t fall… I have felt very tired today so I am not sure if that is the reason but I hate the way this illness can sometimes control me. I cancelled going to an event tonight as I feel so unsteady and things moving around me more than ever…
I’m sorry to hear you are having a particularly bad day with the balance- trust me I know how awful it feels- that is my worst symptom too. After reading many med success stories, it seems really common to have bad days mixed in with good days in the beginning of being on meds- it doesn’t mean the med isn’t working- but for some reason this seems to be a really common pattern. Eventually the med does work more consistently I think, but for some reason the up and down pattern appears frequently? Hopefully give it more time or else maybe up the dose?
If it’s any comfort I have literally been bed bound all day, I know I’m not in the same boat but I started strong antibiotics 2 days ago and literally couldn’t even walk across my house today, the dizziness is horrendous! My vision is awful too, cannot fix my focus on stuff and am so so swimmy in my head. I think tiredness plays a part in MAV and lyme, best thing is prob to have a really chilled night, get to bed really early and tomorrow is another day! x
Rich - I am so sorry. forgive me I am blanking. are you lyrica or lamictal? I hope so much tomorrow is better.
lizzie - remind me, what antibiotic did you start on? I’m so sorry you are doing so rough, but hopefully a good sign that antibiotic is working, although feels so dreadful
Just wanted to say I am sending best wishes your way.
There is nothing worse than a bad MAV day and having to cancel things you were looking forward to. It makes you feel like it’s controlling your life. But, it’s not. You will get there and this too shall pass.
Be kind to yourself and rest up. Tiredness always sets me back. By 9pm at night I am so off balance that I can hardly make it up our stairs!
Keep us posted and I hope you feel better quickly.
I have continued today to feel off… I have that horrid pushing and pulling sensation whether I am sitting or standing and my head just feels really foggy and not very clear. I hope I will get back to the way I was on Tuesday and hopefully progress there on. I hate feeling and having to concentrate on this stuff all the time… I just want normality.
@Lisa hey there I am currently on 300mg of Lyrica per day
Diet, lifestyle changes and Lyrica got me to about 70%. It took a while but i got there. Like you i went backwards a couple of times. DR S said to me that’s it not uncommon to get worse before you get better. Stick with it mate you will start to get more and more good days. Just try and push through on the bad days.
I know its hard mate but try not to think about it and wake up in the morning and think am i better than yesterday. Just think i’m dizzy today so what. You will then look back in a few months time and think i am better than i was 3 months a go
a quote from Dr s ‘‘A watched kettle never boils’’
after a few days where i was starting to feel a little better… even to the point I felt more comfortable standing still without so many sensations of movement,
today has been horrible. I have felt as unbalanced as I ever have since the start of all of this crap. I have felt unsteady to the point where I felt like I might actually fall!
In the past the sensations have always been there but ive known i wouldn’t fall… I have felt very tired today so I am not sure if that is the reason but I hate the way this illness can sometimes control me. I cancelled going to an event tonight as I feel so unsteady and things moving around me more than ever…
arghhhhhhhhhhhhhh
— End quote
Richy it’ll be a lack of sleep- when i have a late night or a bad sleep, i feel immeditely worse. It’s such a pain to be so sensitive; but atleast it is easily avoided by sleeping a full 8 hours if you can x
Richy i can’t tell you how similar we are symptom wise. Maybe that can atleast be a comfort to you in knowing we are on the right path. I also get the pulling and pushing at the back of my head. Yesterday i had a stressful day and i felt as though someone was pulling my rucksack back while i was walking. I really do know how you feel and on days like those, you have to just do what you can, and then get to bed at a reasonable time and watch some TV! everything moves around me aswell as me feeling the rocking and pulling and pushing too. We’re in the same boat and we will get better - with the help of Lyrica and my Amitrip!
Diet, lifestyle changes and Lyrica got me to about 70%. It took a while but i got there. Like you i went backwards a couple of times. DR S said to me that’s it not uncommon to get worse before you get better. Stick with it mate you will start to get more and more good days. Just try and push through on the bad days.
I know its hard mate but try not to think about it and wake up in the morning and think am i better than yesterday. Just think i’m dizzy today so what. You will then look back in a few months time and think i am better than i was 3 months a go
a quote from Dr s ‘‘A watched kettle never boils’’
— End quote
You are right mate… normally i don’t look out for symptoms in the morning, but today I was certainly watching and dreading getting out of bed.
You always have great advice and encouragement so thanks for that mate !
Richy i can’t tell you how similar we are symptom wise. Maybe that can atleast be a comfort to you in knowing we are on the right path. I also get the pulling and pushing at the back of my head. Yesterday i had a stressful day and i felt as though someone was pulling my rucksack back while i was walking. I really do know how you feel and on days like those, you have to just do what you can, and then get to bed at a reasonable time and watch some TV! everything moves around me aswell as me feeling the rocking and pulling and pushing too. We’re in the same boat and we will get better - with the help of Lyrica and my Amitrip!
— End quote
Hey WTC, I have gathered from a few of your posts how similar we are symptom wise aswell.
Do you hate standing still? That has to be my absolute worst symptom, feeling of the ground moving and sensation of movement inside myself.
I don’t like standing still no, but i think i hate walking more! :oops:
My ami has helped me feel ever so slightly sturdier when i’m standing still though, but the rocking always gets worse when i am tired/ haven’t eaten enough/ stressed, or just having a bad day!
we are so similar! I actually feel better walking than standing still… although not that much better… still like walking on the deck of a boat in rough seas…
