Last reply 9 months ago


I was hoping someone might be able to tell me their experiences of dizziness? I am having my second relapse in three months and my Neuro tells me I have a lesion in the brain stem causing the dizziness I feel very drunk all the time and it is really getting me down. I also have numb mouth, tongue, face and head. The worse thing is this dizziness tho and it is effecting my eyesight. I’m all over the place. I’ve just finished more steroids and as you can probably tell i am fed up! Anyone else had this? Does it ever go?? I know it will probably pass but it’s so hard waking up everyday like this 😔

Thank you

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9 months ago

Tell me about it. It is like being drunk without the lowered inhibitions and euphoria. The thought of having a drink is ridiculous. I would do anything to feel normal again. For this numbness to subside.

9 months ago

Really sorry to hear your going through this. I know how awful it is.
I had a brainstem lesion, at onset, last year. It had me in all sorts of bother, and similar to you, I had issues if dizziness.

It was at first thought I had an ear infection, as I had mild balance issues for first few days. But it of course turned out to be much more.

Things have got much better. I have all but got over the dizziness, 99% of the time. There are ocassions when things stlll are not great, but hey, I guess that was the case, even before.

I know it’s frustrating and terrible to go through. And I spent ages searching for reassurance on the net, that things would get better. And while I didn’t actually fully know if they would. It eventually did.

The face numbness has subsided, again to maybe 90%. It started on my lips and tongue. One stage it crept all the way to scalp, but was purely left side of face.
It’s odd, as it’s noy numb, as such. More like the stage after being numb at dentist. And it’s transient, changing all the time. I think I’ve just got use to it.

I feel amazing compared to the peak of the relapse and just continue to hope for a full recovery. Otherwise, just see these residual things, as battle scars.

Hope it gets better soon.

9 months ago

I’ve had it twice so far and mine lasted 3 weeks approx. mine was so bad it pretty much disables me to the point of not being able to sit up. Im just on my 2nd flare up and my dad would go to Tijuana lots for cancer treatment and his doctor gave him an anti inflammation pill called nimelsuldin from Mexico. I took 200mg yesterday on day 22 and it took away 50-75% of my dizziness symptom to the point I thought I was ok to drive. My pharmacist says they are harmless so try them if u can get your hands on them. Start with 100mg. I was an avid squash player. Hopefully still am so they take away the pain after a gruelling match but seriously they helped me a tonne. Also take turmeric for your joint issues it’s good for u.

9 months ago

@job777 @londonlad @aabreu Thank you so much for your replies I cannot tell you how much it helps to know someone else actually ‘gets’ it. It’s so hard to put into words to family and friends and not their fault that they can’t understand. I think I’m struggling being off work, I want to go back but because of how this relapse is effecting me I can’t go back and it’s so frustrating. I will try and be patient. It’s a horrible feeling having the choice taken away. But for now, chin up 🙃

9 months ago

U betcha. The more we can communicate to what helps and what hinders the better. I know it’s hard to get in fluids but I went to emergency and received 3 bags of whatever they put in the solution. Salt water I think but hydration is key. So try and drink lots of water. I can’t seem to get enuf down so I’m Just preaching at the choir but I’m sure it helps.

9 months ago

Was Terribly dizzy when I was first diagnosed (24 years ago) spent 3 weeks in bed notknowing if I’d ever get up again and neither did the family, it gets better slowly and then I started dmt drugs and haven’t really looked back! Loads of bumps in the road since but you learn to deal with it as it comes. It’s a journey, try anything that anyone suggests as long as I t does no harm, good luck😍 Jill

9 months ago

Nimesulide has been mentioned above by @job777 .

This has been banned in the USA, with a recommendation back in 2008 that it should be banned worldwide :-

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