Dizziness upon walking: Hello, my friend has... - Ataxia UK

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Dizziness upon walking

densig
densig
38 Replies

Hello, my friend has ataxia. His neurologists is "guessing" that he may have MSA-C despite tests and symptoms not being neatly pigeon holed into that category. He walks every day and lifts weights. He of course is very aware of his changes in gait and mobility having spent his entire life being very active and athletic. His biggest complaint (besides speech challenges) is the dizziness he feels when he walks. He is fine if sitting down, but once he walks he said he feels drunk. Do any of you have this same side effect? If so, have you found anything that helps or lessons it? I know it is very different but when I had a brain injury, I had to do vestibular rehab due to my constant dizziness with movement. Is there any thing like that which may help? Thank you in advance for any information! Take care!

38 Replies
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wil_ka

Hi there! Initially my dizziness and loss of balance a few times a day led me to seek out the cause, SCA-2 was the culprit but radically changing my diet over the past 3 months to DR. Wahls Paleo plus and the dizziness is gone.

I'm now working on weekly yoga, running, balance and propriation exercises to strengthen my balance, already I'm seeing improvements.

My message to your friend is of hope, it takes a lot of courage and persistence to fight back but you can. I urge you to read Joe's profile, his research, links and regimen is one to explore. I'd keep the focus on healing whilst diagnosis is up in the air.

healthunlocked.com/user/sunvox

Sending strength, Karen

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densig
densig
in reply to wil_ka

Thank you, he is already gluten free but will look into the paleo diet. I have read the link and it has some wonderful information!

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pinjem
pinjem
in reply to wil_ka

Have ordered the cookbook! Thank you.

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Legs-alive

I would advise your friend to go have his blood pressure checked out it could be something to do with that, this can often be the cause of it & is a symptom of a certain type of ataxia I’m not sure which one at present tho.

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pinjem

I am 'constantly drunk' in effect only, all the time, except when sitting. As I said on another post, best to see an specialist Ataxia neurologist, in a specialist ataxia unit, London, Oxford, Sheffield. Ask to be referred. Send it via your GP or ask by letter directly? The relief of someone instantly knowing your symptoms and understanding is huge. We all have different symptoms. I asked to be referred after it became clear my lovely neurologist was completely baffled and was going to chuck anything that might work at it. I luckily had read about gluten ataxia and had stopped eating all gluten which dramatically helped, improved me but is not the end of the story, I may have something else as well. I read papers from Prof Hadjivassilliou which made the 'penny drop'. My symptoms are still with me but being able to walk in deserted areas (moving things make me fall & I cannot see the ground/depth well enough,) just holding my spouses hand rather than an aid or hanging off his arm is brilliant. Still cannot read a book, drive, be anywhere safely outside without spouse. See my post about "Mobility Aid that you can use in a normal walking position that transformed my life." Just in case. Incidentally, get gluten tested asap by your GP, easy to do, I was told I was not coeliac, but I wouldn't have a positive test after giving it up!! You can be gluten intolerant without being a coeliac. Worth trying.

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densig
densig
in reply to pinjem

Thank you, he is gluten free and ironically his Neurologist said his blood work did not show gluten as being an issue. Ummm, yes because he has been gluten free for a couple years.

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pinjem
pinjem
in reply to densig

Worth knowing that gluten intolerance is different from coeliac disease and is not detected with the normal blood test anyway!

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wobblybee

😏 It is known that other Neurological conditions can have very similar symptoms to Cerebellar Ataxia, and expert opinion is needed to differentiate them. Sometimes people have a form of Acquired Ataxia, again it takes an expert to pinpoint the exact cause. My own symptoms started out being Vestibular, and at one point I was misdiagnosed with Epilepsy, which led to a long delay in getting an exact diagnosis, while disorientating symptoms became increasingly worse.

For me ataxia diagnosis came due to having falls. My GP was at a loss and referred me to a Falls and Syncopy Clinic, where I had a Tilt Table Test. The test itself wasn’t unpleasant, but when I stood upright afterwards my legs collapsed, I felt pleasantly inebriated and definitely drunk. Then an MRI was arranged, mild Cerebellar Atrophy was detected, and this finding along with my other symptoms led to a positive diagnosis of Idiopathic Cerebellar Ataxia. Genetic testing at this stage ruled out the more common types of Spinocerebellar Ataxia (SCA), and most importantly dismissed the diagnosis of Epilepsy.

A few years later I was invited to donate DNA for a regional project, and due to that my whole genome was screened. Nothing untoward was found which came as a relief, but I do have a link with a Recessive Ataxia Gene.

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nycgeordie

Hi, I'm originally from the UK but now in NYC and happened upon HealthUnlocked recently. In reading your post, having been misdiagnosed for many years, I'm curious as to your last two paragraphs where being ruled out from the common types of SCA and your link to a Recessive Ataxia gene. Would it be possible for you to elaborate as the cost of genetic testing in the US is extremely prohibitive, particularly given the lack of proven treatments.

Many thanks.

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wobblybee

I was asked to donate DNA for a research project, so it didn’t cost me anything. If you google ‘cost of Exome testing in the UK’ several links come up, but whether doing this would be more cost effective than using such as Athena (US) I don’t know.

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nycgeordie

Thanks for the prompt reply. Athena is a health technology company for providers, unfortunately. My question was more in regard to your understanding of Recessive Ataxia gene diagnosis.

Thanks

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wobblybee

🙂 I misunderstood, and thought you were enquiring about the cost of genetic testing.

Re my link with a Recessive gene, I do understand how this has come about. Both of my parents had to have been Carriers, would have been unaffected themselves and totally unaware they carried a mutant gene. Only because they came together with both of them carrying a mutant gene, was it possible for any future children to have a 50% chance of inheriting the gene and show symptoms. My only brother is unaffected. The Recessive gene can be ‘dormant’ for generations until 2 Carriers come together, and then have children.

Generally speaking, I have typical ataxia symptoms, poor balance/dizziness-eye problems-poor perception of depth/lack of spatial awareness in the dark-choking/swallowing issues/tongue biting-Peripheral Neuropathy/stiffness/pain etc and Vestibular problems.

Despite a link being found, there is no cure, only therapy or medication to alleviate certain symptoms. Being diagnosed with ataxia, will have access to similar therapies and medications in the US. It may depend on whether you’re being seen by a Neurologist who specialises in Ataxia as to how they decide to prescribe for you. If you aren’t already being seen by a Specialist Ataxia Neurologist (they all specialise in different conditions), log onto ataxia.org to find a link to Neurologists and Movement Disorder Clinics.

BTW, are you an ex-Geordie🤔

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nycgeordie

No worries, and apologies for the late reply. Sorry you have so many symptoms to deal with and thanks for your response.

Fortunately, despite being mis-diagnosed for so long my symptoms aren't so severe as yet. I have a lot of what you describe but not the swallowing issue. I walk with a cane though not too far these days. Having been an active athlete much of my life the hardest thing for me is judging how much exercise is right as I can so easily overdo it. What's particularly frustrating is to be told the best thing one can do is exercise yet it seems I feel detrimental effects of exercise the next day or sometimes within a couple of hours in terms of walking and leg control.

I'm at the Columbia Presbyterian Centre for Neurology but your question about my doctor being a specialist is well taken. He's a young Chinese guy who inherited me when my original neurologist moved to the midwest. I think he specializes more in tremour conditions so I will definitely ask him if he considers himself a ataxa speciallist and check out ataxia.org again.

I've been doing a lot of my own research for the last twenty years from my original mis-diagnosis and now into ataxia research. It seems there is more happening in neurological research than ever but as we know each promising new breakthrough is inevitably years away. I've even thought of harvesting my stem cells for a later date as it's known that their effectiveness diminishes with age.

I'm currently creating a new supplement list to purchase along with a more vegan diet I've been on for the past few months. Do you have a medication and/or supplement regime?

And in answer to your question, which prompted me to change my profile image, no, I'm not an ex Geordie, I am a Geordie! 🇬🇧😇

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wobblybee

🙂 I tried to remember every symptom I’d encountered, and thankfully they don’t all coincide at the same time. I did it because it’s often helpful for people to realise these symptoms are real, and not just ‘in their head’.

I agree with you about exercise, although I’m all too aware of what happens when I’m inactive, symptoms of my type of ataxia can be triggered by over exertion and fatigue, it’s a fine line.. On a good day, I like to attempt some gardening, and not just picking flowers 😉

I was being seen at Newcastle Ataxia Centre, yes we did have one🙂 But it closed last summer. Before it closed I was given an appointment in London. Getting to know a different Neurologist can be tricky, it can take some time to build up a raport and feel comfortable trying to explain symptoms. But as things turned out it was a pleasant experience, I was given a review appointment and then a referral to someone else.

Like you I’ve done a lot of research since diagnosis, to be honest it’s just about the only way to fully understand this condition. But it’s been rewarding, and taken the mystique away from what can be a pretty scary ‘new normal’. I’ve never heard of ‘harvesting my own stem cells’ .. although who knows if this might one day be common practice. Personally I think Gene Editing or Drug Repurposing could be something of a breakthrough for ataxia.

Years ago after being misdiagnosed I was obliged to take medication that did me no favours whatsoever. I still feel badly done by, and currently don’t take any medication to help with symptoms. Obviously this situation could well change according to progression. At the moment I regularly take Ubiquinol (CoQ10) and VitD. As far as diet is concerned, although I’m not diagnosed with Gluten Ataxia, I can sense when I’ve had too much of a good thing when it comes to gluten. Too much yeast doesn’t sit well with me either, and I have to be careful with carbohydrates and sugar. I was once diagnosed with Candidiasis, and have since found out that it can cause Neurological symptoms not unlike those of ataxia.

BTW, also a Geordie 👍🙂

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nycgeordie

That's quite the coincidence, "Hinny"!😂 Where be you from?

I've tried VitD myself but a recent video I saw which featured an interview with a prominent female scientist in the field said that such supplements don't really work given how the human metabolism works. It doesn't do any harm but the effective percentages of active D from supplements compared to 10 minutes of sunshine is miniscule.

We obviously have similar stories as my mis-diagnosis had me on a two hour intravenous medication every two weeks for ten years or so. I even founded an association with the neurologist who diagnosed me. Yet after seeing several other neurologists out of frustration as I had always felt my symptoms didn't meet the criteria, then identifying ataxia, I left a message with his wife to tell him the news and he never called back. I could feel hard done by but I know he was doing his best and it was a lesson learned that even the smartest people can be blinded by their cognitive and/or unconscious biases.

I hope you have a good support network given that the Newcastle centre closed.

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nycgeordie

Sorry, just remembered, no personal information. Cancel my question.

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wobblybee

🤔 Have you been to a National Ataxia Foundation Convention. I went to one in San Antonio in 2017. This year it’s in Las Vegas, and by all accounts should be well worth the trip, eminent Neurologists will be speaking, and taking questions. But it’s next week😐 Anyway, log onto ataxia.org for full information. 🙂

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wobblybee

😏 The majority of us ataxians in Newcastle are now being referred to the RVI, to a Neurologist who specialises in Mitochondria. This isn’t ideal, many people find yearly review appointments are severely delayed, one person told me she’d been simply referred back to her GP for future care..and we all know how helpful that is.. Most of us, me included, rely on the NHS (which is wonderful but very stretched), private treatment isn’t an option even if Neurologists specialising in Ataxia grew on trees 😉 Stay where you are 😉

My Neurologist suggested VitD because I complained my hair was falling out..and it has helped, but in any case roll on Summer 😊

When I think about our combined experiences, we must be ‘two tough Geordies’ 😂

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nycgeordie

I don’t know if I’d consider myself tough, maybe stoic at best. I’ve heard from old college friends how bad the NHS has become but your experience doesn’t seem so bad as you appear to have had more exploratory procedures than I have since diagnosis. It does give me concern about choosing where I’m to live should I return.

Haven’t been to any ataxia conventions and not sure I’d want to since my efforts with the Neuropathy Assoc. I often found many patients who attend use it as an opportunity to bemoan their predicament and as such I’m also very aware of the sub-conscious power of the mind when being in such environments, but that’s just me. Moreover, I’d have to be paid a lot to visit LV 🤬!

A sunny morning here so a good day for a walk.

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densig
densig
in reply to wobblybee

Yes, he shows mild cerebellar atrophy but then no progression of such on repeated MRI a year later. The term idiopathic is somewhat discerning as I think sometimes a label helps with facing whatever it is and moving forward.

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wobblybee
wobblybee
in reply to densig

🙂 In my case, I’ve had 3 MRIs over a period of years and all show the same amount of Atrophy, no progression. And yet, my actual symptoms have progressed.

Idiopathic simply means ‘ no cause found’, it doesn’t actually change the diagnosis of Cerebellar Ataxia. The very fact that I was diagnosed with ‘something’ helped me enormously, someone actually believed me and the ‘non-sensical’ symptoms I had been experiencing were actually real, not all in my head. That is what helped me move forward.

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pinjem
pinjem
in reply to wobblybee

This "Not being believed" is a huge problem, even those close to me thought I was exaggerating sometimes. As if we don't have enough to cope with!! A diagnosis helped hugely, made it a real (and serious) problem others could latch onto. My previous GP actually argued with me about it. Changed GP, what a relief. One of my children said recently that I often seemed to not want to do some active things for weak reasons in the past- erm, maybe I had been affected for many years? Thank goodness we have specialist centres we can attend, thank goodness for the internet where I found part of a solution (no gluten) though that is not the whole problem.

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lottiejemma
lottiejemma
in reply to pinjem

Hi Pinjem thanks for your above post, I have been almost suicidal with people in the past , obviously thinking I was exaggerating my symptoms , sometimes I thought I was going mad, like you , I am so very grateful for the net, I do not know what I would do without my laptop . Take care --- Lottiejem

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ddmagee1
ddmagee1
in reply to pinjem

Nothing irritates me more than not being believed, by a doctor, when I'm discussing, what is to me, a disturbing symptom, that something could be wrong, and I need help to find out what's going on.

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pinjem
pinjem
in reply to ddmagee1

Yes. Especially with something like ataxia. This can be a problem when GP's don't know you and make assumptions. I look very healthy most of the time, until I walk, but I also expect to be believed!

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densig
densig
in reply to wobblybee

Thank you! Yes, he was seen by a neuro at a movement clinic at a teaching hospital.

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Mariweena

Sounds like orthostatic hypotension...I say that because I have it. If it is OH then it’s possible that your friend may have MSA-C. The two things that occur in MSA that don’t normally occur with CA are OH and REM Behavior Disorder. REMbd basically means that when in REM sleep a “normal” persons body becomes virtually paralyzed as REM dreams can be violent. In this disorder a person acts out there dreams. How do I know this? Because I have both. My husband and I haven’t been able to sleep in the same bed since this whole fubared mess began 9 years ago:-/. Although I had many symptoms of a neurological issue (had a TBI in 2010) I was only diagnosed this past year and my neurologist told me to “do some research” because he didn’t know much about either ataxia and MSA?!?!

I could seriously go on for paragraphs but I shan’t. Hope my answer helped!

Peace

Marina

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Rhyothemis

I had bouts of orthostatic hypotension that resolved after taking a CoQ10 derivative called MitoQ. Later I saw on an MSA forum one individual reported his OH went away after taking CoQ10. I had symptoms of REM behavior disorder this past summer, but now just my usual insomnia (actually, I've had about 4-5 days now of much better sleep - i.e. more than 3 hrs). I'm also now taking PQQ first thing in the morning; it can help with circadian rhythm entrainment as well as mitochondrial biogenesis (making new mitochondria). I'm also using a blue light - Philips GoLITE - while I make breakfast.

I don't have a diagnosis. My father had MSA-C, which is not supposed to ever be hereditary (so I wonder about his diagnosis). He had nictotine sensitivity and also the 'hot cross buns' sign on MRI. He died several years ago, before I had read much about supplements or alternative medicine. I did send him some Lion's Mane, which he said helped a lot. I tried it and I had a flare up of sciatica, so I stopped.

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whywouldi

Hi Densig, I suffer from similar symptoms,I have found SERC tablets are helpful with the dizziness, My doctor reckons some movements may be squashing a vein or Artery,which stops the blood supply to the brain,hope this helps ,regards JT

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wobblybee
wobblybee
in reply to whywouldi

In the past, I’ve had several whiplash incidents, and my first MRI showed twisted blood vessels putting pressure on my cerebellum. Despite me having a link to a known gene, my Neurologist suspected ‘something else was causing my problems’. I’ve been referred for further testing re Vestibular issues.

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densig
densig
in reply to whywouldi

I am not certain what SERC tablets are ( I am in the US). Do they help with the dizziness?

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whywouldi
whywouldi
in reply to densig

Hi Densig,they are Betahistine Dihydrochloride 16 and 8mg tablets,you take three tablets every 24 hours,they are prescribed for dizziness, they help me a lot, hope they help,....regards Jeff

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densig
densig
in reply to whywouldi

Thank you so much! I will check to see if it is available in the US

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Bobby1124

Me too, cannot walk anymore, always dizzy.

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densig
densig
in reply to Bobby1124

I am so sorry to hear this....I hope you are able to find some relief of the dizziness.

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Mariweena

After doing my “due diligence’” I discovered that drinking a lot of coffee and adding more salt to my diet have been amazingly helpful with my OH...better than another damn pill 😕

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Julia808

I have episodic ataxia 1 and wake up like that.

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Julia808

I have EA1 and become dizzy when I walk

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