turkleton12 01/05/17
Last reply 9 months ago
Dizzy and lightheaded when I walk

Hi all,

I am a 26 years old male and I was diagnosed with RRMS this summer after I went to the neurologist with diplopia. I have been an athlete at various levels throughout my life and have always been active outdoors so the diagnosis came as a shock to me. My physician put me on Rebif and I continued my life as usual as best as I could. I was having mild tingling and numbness here and there along with some constipation since my diagnosis but about a week ago I started to feel dizzy and lightheaded. It feels like as if I’m drunk (or hungover bc my head feels kind of heavy) and it will go away if I sleep and wake up but it doesn’t.. At first it was mild but got worse in a couple days. I can walk and run and stuff but I have to put a lot more effort into trying to balance myself while walking. The conditions worsens in crowded areas with lots of stimulation like the subway or the grocery store. All of this coincided with a very stressful time of my life so I don’t know if I’m having a relapse or an exacerbation or if this is something completely unrelated? I wanted to share this here to see if anybody has experienced something similar.

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stumbler
9 months ago

Hi @turkleton12 and welcome.

It worries me that you confess to a very stressful time, as stress seems to be a major agitator to our MS. On this basis, you could well be having a relapse.

Vertigo is a symptom of MS, https://www.mstrust.org.uk/a-z/dizziness-vertigo . And, it seems that your cognition could be suffering to with cases of sensory overload.

If possible, you need to discuss these latest developments with your Neuro.

Do try and avoid stressful events. You need to ask yourself whether getting stressed out is worth risking your future health. Your university should be able to accommodate your MS, by offering tools to help and extending pressurised timescales. You just need to talk to them about this.


turkleton12
9 months ago

Thank you @stumbler I am working on trying to ease the stress and when it comes to priorities my health is ofc at the top but it is easier said than done. I will let my neuro know about the latest developments and see what she has to say about it. Thanks a lot for the insight!


scudger
9 months ago

Hi Turkleton12
I was diagnosed Feb 2016 with RRMS. November last year I was re-diagnosed with PPMS. My main symptom was feeling dizzy and light headed. Trying to walk in a straight line was impossible and walking heel to toe was even worse. My energy levels decreased rapidly when doing the simplest of tasks they became very tiring.

Basically, don’t rule out PPMS as your symptoms are very similar to mine. I was very sporty all my life too. I can’t run as I feel too unbalanced and would fall.

As for stress. I stress myself out thinking how have I got this. Why? WTF?

On the plus side I feel better now than I did when first diagnosed. Based on everything I know now I have had certain mild symptoms for 15 – 20 years maybe more. I just thought it was the ageing process or at times put my body through hell.

Now, I have almost accepted it and I am just getting on with it. Most people can’t see that there is anything wrong with me and there isn’t when I compare myself to some people.


merfield
9 months ago

Turkleton12, It’s different each day for me. One day it’s just the usual balance problem, another day a bit of dizziness too. I try to keep touch walking or grab my partners hand to keep going. I want to avoid full time wheelchair as long as possible. Could you have an inner ear infection? Stumbler is right – best to check it with your neuro, but inner ear could be a possible cause.


vasy
9 months ago

Hi @turkleton12
It sounds like a relapse, please contact your MS health professional

Also strangely enough, but I find alpha lipoic acid to improve my balance a lot


sonia_tailor
9 months ago

Hi Turkleton12
I’ve been noticing myself getting dizzy a lot more in the recent months. And I had a relapse about a month and a half ago where I had numbness on my back for a few weeks. I’ve noticed that any periods when I’m under stress I get a flare up of symtoms e.g. uni exams etc. My MS nurse recently explained to me that when you’re in a crowded area you get information overload sometimes due to not being able to multitask as well, leading to a quick symptom flare up or panic
For me it’s dizzyness, weakness and panic
Maybe that’s why you feel worse when in crowded situations like the train ^^


ma1984
9 months ago

Not a specialist but I had exactly the same sensation when I had relapse ;( shopping was a nightmare.


cee79
9 months ago

Oh wow, I have come to the realisation that there are others out there experiencing same/ similiar symptom as me!!! Makes me feel that I am not a freak!!! But I don’ t care, I like being a freak!!!!
I was diagnosed late 2013. And prob within the last 6-9-12 months, I have had this same feeling- when walking, I feel drunk/dizzy/ intoxicated, slightly off balance, I trip over when I run/jog/walk maybe because of ‘drop foot’- who knows?, but I can’t mobilise as I used to. I have noticed that my brain/cognition gets worse when in an over stimulated environment or my ‘brain’ gets too tired or like its going to explode. I have also felt ‘stoned’ before (yes I know how it feels like to be ‘stoned’!!!)
Back to feeling drunk…… it’s happening to me more so on a daily basis now, it’s really frustrating, because it just engulfs me, and I find it hard to do pretty much anything, even walking round the house is difficult letter alone walking around outside, supermarkets are difficult too.
I am also two months post lemtrada treatment, which has for now exacerbated this symptom. I will be seeing my GP next week to talk to her about this, and try and Rule out any other physical cause, but I think it’s a symptom of my MS!
I have found that taking a very hot shower, taking a bath or having a sauna definitely exacerbates it. I wish you the best of luck my friend, it’s a horrible symptom to experience, one that I’m currently battling with. @turkleton12

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