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Scleroderma & Raynaud's UK (SRUK)
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Dizzy unbalanced spells and flying

Hi everyone,

I'm currently being investigated for numerous symptoms associated with my conditions, but at the moment I've been struggling in particular with unbalanced dizzy spells where I feel like I'm falling over or floating, especially when moving.

I have quite bad anxiety at times which no doubt is making things worse, including a fairly severe phobia of vomit.

Bur today I finally managed to walk around a shop for the first time in weeks without any support from my partner and without feeling horrendous, so I'm finally starting to feel more positive.

A year ago though I booked a long weekend trip for my birthday (this coming Thursday) to go to Bucharest.

I've read a lot of fairly positive things online about being able to fly with these type of symptoms but just wanted to know if anyone else has had a similar experience and how did they find it, to put my mind (hopefully) at ease!

I'm in two minds about cancelling at the moment but would still really like to go if possible, doctor said it might even do me good to relax!! But I'm a nervous flyer as it is so am understandblry concerned!

Thanks :)

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I'm not sure if my off kilter experience is the same as yours. It only affects me when I'm standing of walking but similar to you I feel unbalanced and get moments of vertigo, mainly with fluorescent or bright light to low light or patterned or uneven flooring. I have managed to fly several times despite this symptom. The longest flight was to New York two years ago and it was very hard each way as it made my legs very swollen and painful and the dizziness was bad throughout our stay. But still worth it just about.

A few weeks ago I flew from a Scottish island to London on two different planes and that was completely fine. I find using a stick helps to keep me right if I'm feeling a bit anxious about my balance.

I am determined to not let my health problems put me off living - although my son wants me to come and visit him in Australia and that really doesn't feel possible as things stand. It's the pain in my legs from sitting so long and the dryness of the air that I just could not face for 24 hours each way. Bucharest sounds fun though!


That's exactly it!! Overheating seems to set me off too and when I'm generally in motion (although it does happen when I'm sat still occasionally)!

That's great news to hear that you're tackling it so well! My auntie was diagnosed with tinitus some years ago and swore off flying straight away, she's not left the country now for 15 years and I'd hate to work myself up and do the same!!

Do you have any advice? It's two flights, one 2 hour than a 3! Everyone I'm travelling with are aware of my condition and I take stemitil daily to try and help.


I have no advice apart from the stick and I can't stand for more than a minute now so a stick with a seat is really good (I lost mine in the London Underground in rush hourπŸ™„πŸ˜•).

I find that having an aisle seat is best so I can get up and down for toilet. It's such a shame when people use their diseases (and tinnitus is just one of many symptoms for me) or conditions as a reason not to do things they've always loved previously or wanted to try.

My son is 24 and has aspergers and may settle in Sydney forever so we were talking about this with him earlier on phone. He wants us to come and see him so much and just refuses to accept that my disease is an excuse! So I think we will have to bite the bullet next year but I'm going to insist on going business class so I can move about more.

It's all about glass half empty of half full thinking. When the vertigo and disequilibrium are at their worst I just tell myself I'm drunk on life and stoned on fresh air - yippee it's exciting and kalaidoscopic -I'm not really scared or unlucky - I'm enhanced!!

Don't know if this helps you but it's how I deal with it now! Rheumy consult in a few hours so mustn't be too positive!


I think this is my favourite response on this site so far haha, I too keep trying to convince myself that I'm actually drunk or on a ride 😁!

But you're spot on with what you're saying, I'm trying to be as positive as possible but I'm more of a 'The glass is half water half air' kind of girl so changing my attitude is key!

Really hope you manage to get over to see your son!! I dread the thought of ending up like my auntie as I used to love travelling!

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You won't end up like your auntie. You've made a decision already by posting about it so your glass is now half full and the world is your oyster! 🍷🍾🍸 πŸ’ƒπŸ»πŸ›«πŸ›¬


I find merino wool socks v warm. Last ones I bought at Costco. But similarly a thin merino wool jumper or cardigan is much warmer than polyester or acrylic which even the insulate ones are made of. I think it was Mr Jaeger who realised that wool held warmth on the body whereas cotton draws warmth away from body. Of course no polyester/acrylic then but I find this too warm when it hot & not warm when it cold- so I think Mr Jarger had something there. If you go to Italy they have fine merino wool vests that are not itchy.


Hello there....I have some dizzy spells, not as severe as you have experienced, but enough to worry me when driving. Rheumatologist thinks they might be due to the meds and low blood pressure. I have flown this year , not long haul and found that the pressure caused my ears to block and this led to more dizziness. The block feeling took ages to go away too. I've invested in ear plugs for the next time and generally tend to make sure that there is somewhere I sit if I am having a woozy day...I've even asked in shops and most people have been very helpful. Great that you have a holiday booked and have managed a walk around the shops....your doctor's advice sounds good to me. I don't know if this is helpful but you aren't alone...and it may help to have you blood pressure checked out...oh and some ear plugs just in case...πŸ˜ƒ

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Ear plugs are now on my list!!

Mine started to affect my driving, stopped going on the motorway at first and went on the back roads to work, but it's too bad to even do that at the moment! Going to try going round the block today with my dad to see how I am!

I'm hoping it's a phase that will pass, but I'm still waiting to see my Rheumy as I've not spoken to her since all this started happening!


My mother has Vertigo which is an inner ear problem associated with balance difficulty. Have your doctor check on this. I have Raynaud's and balancing is not an issue with Raynaud's.


I've been checked by an audiologist and they couldn't find anything, I have an undifferentiated connective tissue disorder so I believe that it's associated with that!


Hi Lauren, I think the anxiety issue comes with all the other symptoms being investigated. My experience of dizziness turned out to be my heart being affected and I now have a Pacemaker. I also highly recommend a brilliant collapsible (into small V shaped carry bag) walking stick that has adjustable height and a seat 'handle' so that when you need to stop,balance and take breath,it converts into a seat, so you can relax. It is called a Flipstick and is made by a company in Evesham. If you Google they'll be illustrated for you to get an idea. I go to nearby outlet called 'Indy enabled living' 01386443857. indymobility.co.uk I also am booked as an 'assisted traveller' when flying which is also a great anxiety reliever! Hope this adds to all your other replies giving you some comfort that there's practical help you can utilise while you're having your symptoms investigated. Best wishes you you.


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