Hi all, I’m having a bad day today and need some reassurance. Lately I’ve been experiencing episodes of a sudden weak feeling combined with an extreme urge to sit and rest. It’s hard to explain, but I’ll try. It feels like an inner shaky trembling feeling. Nothing that you can see from the outside. And I get very fatigued. Does anyone else feel that way? Sometimes it comes on even without the dizziness but more so when I’m dizzy.
I have experienced shakiness and fatigue which is bad when the dizziness is bad. When I had a relapse last year, I was shaking all the time when I tried to start doing normal things again. I thought it could be my meds but now I think it was the dizziness that causes it x
Yes, I get this too. It’s very hard to explain, but I’ve used the same words that you do. It’s shakiness on the inside, almost like my insides are turning to mush. I have symptoms every day with this illness, but the ones you are describing usually only happen when I’m having a more acute migraine headache attack, or if I’m in a car for too long. I wish I had a solution for you, but I just have to lie down until it passes.
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Lately I’ve felt like my legs are a little weak kinda shaky its a new one for me Jenn could I just ask how long your relapse lasted and did you go back to how good you were before?
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Hi Shenay
I will summarise my position for you since you asked…I got dizzy 4 yrs ago (April 2009) and very slowly I had been recovering, taking it easy and not working and taking no meds for the first 3.5 yrs thinking I was recovering from Vestibular Neuritis or similar then last July I suddenly started having attacks of spinning vertigo and began feeling dizzier and dizzier every day until I was bed-bound and like at the beginning again. I then found this site and started investigating MAV. I asked my GP for Nortriptyline and slowly built up to 35mg over several months. I saw Dr Silver in Oct 2012 and now I am under Dr Surenthiran on the NHS. Both diagnosed MAV or migraine variant. Gradually over the last 9 months I have been getting back to where I was prior to last summer’s relapse. So it has taken meds and a fair bit of time to be feeling back to my baseline (if have one). I am just adding Gabapentin to the mix under the advice of Dr S so will see if that can help get me any further on the road to recovery. How are you? Do you think you are relapsing or is it just a small blip? x
Hi Jenn
I’m not sure I’m no way near as bad as I was but having a few new symptoms so that’s a bit scary I did Ring Dr S secretary today thought I should try talk to him to see if this is normal after feeling so good for so long, I have had quite a bit of stress in the past couple of years and it didn’t affect me so why would it now.Do you have to travel far to see Dr S I live in Essex so it’s not too far my friend always takes the day off to take me cause going by train is a nightmare.
Shenay x
Yes I live in Cheshire so it’s a four hour drive to see Dr S. I have only seen him twice and he says the next appt can by telephone to save me having to travel down. I did make it a mini break in Kent last time and it worked out quite well. Luckily my partner drove us. I can drive ok with MAV but I don’t like driving on motorways anyway so would not drive there myself. Did you get to speak to Dr S or his secretary today then? x
I spoke to his secretary and she said she would speak to him and let me know I’m not desperate so not in a big hurry my biggest worry is taking my 2 year old to pre school I get a bit worried being out on my own with him. Wow a long drive for you then do you have the brain physio too?
Yes I’ve got the VRT exercises to do. I have been doing them for years now as I thought that was how to compensate for VN. I am not sure how much they actually help MAV x
I get this all the time too for what it’s worth. Not sure if it’s related to migraine or not.
— Begin quote from “Whirli67”
Hi all, I’m having a bad day today and need some reassurance. Lately I’ve been experiencing episodes of a sudden weak feeling combined with an extreme urge to sit and rest. It’s hard to explain, but I’ll try. It feels like an inner shaky trembling feeling. Nothing that you can see from the outside. And I get very fatigued. Does anyone else feel that way? Sometimes it comes on even without the dizziness but more so when I’m dizzy.
— End quote
During an episode (which lasts months) I always feel the weak feeling with that strong urge to lie down and rest. That inner shaky trembly feeling is very familiar, happens to me almost every morning. And it’s not subjective either: if I try to tense my muscles (eg, my biceps), they’ll shake much more than normal. And the high fatigue is the worst symptom after dizziness.
The first time, I thought permanent damage had been done after 7 months of seeing that, but then, I got much better for several months following, where the shaky feeling virtually disappeared. Also, the sudden weak feeling disappeared 80-95%, as did the fatigue.
So I know it’s possible for all this to go away, and you should keep this in mind too, Whirli67 (and others). I just don’t know how to fix it yet, so I’m having to deal with it for now. 
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