@Muffie

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Muffie

Balance, vertigo, eyes to the right!

Hi everyone, can anyone give me some advice or has this happened to you. Background - Diagnosed ms 2015 ocrevus infusion therapy. So I’ve had extra balance problems and vertigo for about ,5 days. It’s stopped me going out but can move around the house grabbing on to furniture for support. I’m due my ocrevus infusion but it’s been delayed due to the pandemic. I’m about a month behind so put my increased symptoms down to the delay. Yesterday afternoon my balance deteriorated and the room was tilting so slowed down. And it just got worse and worse. Over a few hours my focus was always going to the right and peripheral vision swirling all around the edges. Took 100 lyrica, baclofen went to bed woke at 5 boiling hot and was really sick (sorry). I woke up this morning much improved. Balance still off but no vertigo. Eyes still wanting to move to the right when I look at something. weird eh? Any thoughts? I think I’ll break open the steroids just to be sure but just wanted to check to see if this is a known problem. Last night was frightening. I wondered if I’d had a stroke. This morning I’m just relieved I’ve improved. MS isn’t it just peachy?....?

Clary

@Clary

Hi, sounds what you are experiencing is not nice at all. I can’t say I have the same, but I have balance issues, which I don’t think are ever going away 😢. I feel like I am on a ship. I grab furniture most of the time. Changing direction and position make it worse for me. I have been told physio might be needed by my clinicians, but in the meantime I have been advised to improve my core stability. I am currently trying to buff my abs 😂. Balance exercises and planks for me. Good abs for the summer, here I come 😆. I guess speaking to your MS team if things don’t improve after steroids is all I can say. Sorry to say my advice and experience is quite limited. I hope you can find a way to improve things 🤞.

Muffie

@Muffie

Thank you @Clary you sound like you’re going through the same. The balance side of things is such a nuisance isn’t it although I’m buffing my abs for summer as well👍😂I may be falling about but hey check my abs out 😃 I hope you feel better soon if possible @Clary. I started the steroids this morning and the ‘eyes to the right’ has lessened considerably and the balance so maybe they are working already! Trying to be positive. Thank you for your message. Judy

watsoncraig

@watsoncraig

Sounds like it may be ataxia effecting you which may be down to the O infusion being delayed

Muffie

@Muffie

Ataxia I’ve never heard of that so will look it up. Thankyou whatsoncraig. 👍

Stumbler

@Stumbler

@Muffie , I'd stay off the steroids. The vaccine has to activate our compromised immune systems to create the Covid-19 antibodies. This can cause our MS to flare. It feels like a relapse, but it should correct fairly quickly, as you are experiencing. This is called a Pseudo-exacerbation.

Muffie

@Muffie

Hi @stumbler I haven’t had the vaccine yet as the Prof said If I had it I would have to wait so many weeks afterwards for the infusion. So I opted to wait for the vaccine until 12 weeks after the infusion to have the vaccine. Right decision? Not sure. My vaccine will be mid summer I imagine. I hope they don’t run out!

Stumbler

@Stumbler

@Muffie , Oops, a case of RTFQ - Read The Question! I'll try harder next time........😜

fay_mishima

@fay_mishima

Hi @Muffie I think what you could be experiencing is BPPV --> Benign paroxysmal positional vertigo (BPPV) is a disorder arising from a problem in the inner ear. Symptoms are repeated, brief periods of vertigo with movement, characterized by a spinning sensation upon changes in the position of the head. This can occur with turning in bed or changing position. Going to ENT can assist with this, he just has to do some head manuevaurs for you, or put you in a rotating chair. I had such experiences before the pandemic. Sometimes MS and exhaustion can trigger this. I hope it helps.

Muffie

@Muffie

Fay that’s great and I’m going to explore it. Who would have thought it could be an ear issue. Some good information and I hope ENT sorted you out. I’ve never heard of it before so thank you. Judy

Jaynemozza

@Jaynemozza

So sorry!! Try this it will help:I’m Jayne from Devon, U.K.!! Please do gentle exercises!!!!!! I have ms 14 years now 2PMS! I was a personal trainer before getting ill!! NOW I teach my fellow msers seated/lying/standing only workouts on (U.K. )YouTube “Multiple Sclerosis Fitness with Jayne MSer & Warrior “. I fully understand limitations you all have , as I have them! I’m housebound as my walking/balance poor! My aim is to encourage, inspire and teach what is so good for us !!!!! The body will seize up & ms symptoms exacerbate if body is not worked ! Exercise improves fitness, endurance, strength, flexibility, gait, posture, balance, coordination, circulation, spasisity, pain, fatigue, falls, weight and mood💋please do it!!💋💋

fay_mishima

@fay_mishima

@Muffie Yeah, its these tiny crystals in your ear canals. Let me know how it goes for you and all the best. I hadn't heard it before either until I researched it. I had to go a milion doctor with ENT last on my mind.

Stumbler

@Stumbler

@Muffie , have a look on YouTube for videos of the "Epley manoeuvre". This is a straightforward piece of therapy for BPPV. It won't do any harm if it's not BPPV, but may just help.

Muffie

@Muffie

Thanks stumbler. I’ve never heard of the Eply Maneuver it looks quite straightforward. The tricky bit will be working out the order to do it in. Perhaps I’ll leave it till after I’ve had my first blast of caffeine tomorrow. Thanks again. Judy

fay_mishima

@fay_mishima

@Stumbler @Muffie Thats the treatment they do for you. Not much fun, but it helps. You might need to do it a couple of times. Doctor told me that some MS patients take longer to get back to normal because the lesions/meds can interfere with the treatment. Anyway, as Stumbler said no harm trying it out.