Hi, I'm new to this site and to posting in general so forgive me if I get things wrong.
I have suffered from bouts of vertigo for many years. Just over a year ago I had what I (and the medics) thought was a heart attack. Since then the vertigo has been with me 24/7 and now I have ataxia as well. Like so many of the posts I've read, it's a living hell. The follow up consultation with the cardiologist said I had not had a heart attack. Although I have had several episodes since and used a GTN spray which has helped! He was convinced the vertigo had something to do with it (or vice versa). Anybody know any link between symptoms? To me the vertigo has sort of settled down into a permanent swaying unbalanced motion. Like others, I can't look up or sideways. My mother also had all these symptoms, but was never diagnosed with anything concrete. She died aged 73 (I'm now 71) having got dementia as well.
I am still waiting for an appointment ( 6 months) to see a physio, but to me now, it's gone much too far for that, and if I go, then I have to travel 50 miles, which I can't do. I cannot bear to be in a moving vehicle for very long.
I was always a very active and fit person so this is ghastly. I have to walk with a stick. As we're rural I use a ragwort fork around home which at least looks as if I mean business rather than looking frail. I've had so many near falls, but managed, with willpower to keep on my feet so far.
Any advice would be gratefully received. It is a relief just to know there are others going through the same thing.
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Anitabach
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Hi Anita, I'm no doctor, I have a balance problem and use an electric scooter for getting around outside, and I use walls and furniture for getting around indoors, welcome to the group. I am 73.
Thank you Don. I also use furniture and walls indoors, and now just don't go out at all unless absolutely necessary. No hardship as I've been housebound for years when husband was working. He's not well either and waiting for open heart surgery which is worrying me a lot as I'll have to care for him a well after the op. At the moment it's more him caring for me, or at least propping each other up.
Hi there. I have "graduated" to a walker and miss the rural life we had in Pennsylvania . If you have ataxia, you are in the right place. Its quiet and challenging. Feel good. N (not from the UK but wish I was... Am American.
Thank you Neta for your reply. I wouldn't change the rural life for anything. We live on a steep hill which is challenging with rough ground. Until last weekend I had my gorgeous dog to walk around the fields whatever the weather and so on, but he's sadly now passed on, so I haven't got the commitment which is a relief in many ways, but also feel I'm backsliding.
Sorry about your dog. You can get a new dog, no?? When we had the rural house, I used to walk on the grass-a challenge for me, (My husband died and he bequeathed the house to someone else). I dont have the strength to fight. Also, now, I have no way 2 get there, Once, I fell in the snow. I also bought a neat trike which I rode there on the one paved road. The rural life has many benefits for the ataxic person. You r lucky but shouldn't be entirely alone, I would think... N
I am sorry for your added problems. Life is very rarely fair is it? I like to think I see the half full glass, but not sure these days. No, we won't get another dog, can't cope anymore between us. End of an era as I've always had dogs and we had 5 at one time when we had the horses as well plus all sorts of other animals. To be honest we've had a lovely, but very hard working life, and should be thankful. Not everyone can realise their dream as I did. I guess we're paying for it now in some ways, but that's OK.
I'll be alone when my husband is in hospital, and then caring for him. We have no family and no close friends either, being so rural. A bit of a worry, but there we are. Rise to it!
Right. Thanks for your condolences. I am sure u will figure things out. There must be something or someone because you have Wifi. When we were in our rural house, we used to ride horses at a nearby horse farm run in large part by older women. The owner was Sue. They had various animals, Sue also had a retired husband and two kids, She focused on helping the disabled and was a big believer in the curative powers of horebackriding, RU?
Yes to some degree. I think riding helps your musculature and circulation and a host of other things as it exercises all your body, like swimming does, but help Ataxia? No, in a nutshell. Horses and their care were maybe the cause, if the cause is physical wear and tear, which we don't know. Years of hard grooming and carrying heavy hay nets and so on was thought to be the cause of the vertigo, once MS had been ruled out.
I tend to agree and I wish Sue was around. She was very careful but free spirited.
Indeed, I can't believe strenuous farm work brought on ataxia!! I am no dr but this seems way off the mark unless one's head was involved a la a footballer. If true, other farmers or former slave laborers would complain, I would think. N
It stems from the fact that probably the veterbrae in my neck are worn and have constricted the blood vessels to the brain. Using my arms strenuously tends to make the symptoms worse, albeit not immediately. I nearly always got vertigo after sawing or chopping or something like that, but since then it's taken a sinister turn for the worse. I could not chop or saw now, that's a fact!
Interesting. in todays International New York Times (Friday, July 2i), there is an article that asserts that strenuous exercise or work can lead to a certain harsh but curable muscle disease. (Not ataxia)) So I was wrong. Oops. Hard work or hard exercise can in rare cases be dangerous. A eye-opener...
Very interesting as it was thought at one stage I had ME. All these conditions overlap and have similar symptoms so it's hard to distinguish them apart I guess. Almost everybody who has supposedly got ME has been working hard physically and mentally. I was working 24/7 almost 24 hours a day when we had the riding centre so it was no surprise to anyone that I developed ME symptoms. That taught me to listen to my body, which helped. Now my body dictates to me!! It must all be connected. Can't be separate ailments I'm sure.
Myalgic Encephalitis or chronic fatigue syndrome. I did have help but with animals it's 24/7. Couldn't afford to have everything taken off me, and neither did I want it! DIY if you want a good job done is my motto. I loved it, so it wasn't hard.
Hi Anita, you've just described me! I have been using a walker but now I am up grading to a wheelchair as I am so wobbly and sway everywhere. I can't go out and have been housebound for months. I was using the furniture to get around indoors but had a bad fall and hit the wall, so now I use the walker. The vertigo is 24/7 and horrendous there is no medication and no cure at all, I feel as though everything has been taken away. I can't walk, talk or even write. Hope you have better luck than me! Take care of yourself Angela x
Hi Angela. My heart goes out to you. I am not that bad, certainly in comparison. At least I can sort of walk, and talk and just about write although I've noticed that's getting harder now. It does seem as though nothing has moved on though medically. My mother was up against a brick wall, but that was in the late 80's!! You would have thought in 30 years there'd have been some breakthrough. I am just astounded how many people seem to suffer from Ataxia, just looking at this site.
Very glad I've found you all. It helps a lot to know you're not alone.
Hi. I believe vertigo can be a symptom. My uncle & other family members suffer from it but i don't know the severity. We're all different. I do know my uncle walks with a wide gait & ataxia has been mentioned too.
I don't have vertigo but suffer with nystagmus (uncontrolled eye movements).
I used sticks for ages both inside & outside but they're not enough now. I use a rollator for short distances ie around house or in garden & ive a scooter/wheelchair for longer distances.
What's a ragwort fork? Ive tried a quad cane in the past but it didn't suit.
Like you i used to do lots of exercise & loved dancing. I try & keep as active as i am able now as exercise really helps within moderation (i don't overdo it). 10 mins is about my limit. Safety is essential too. Cycling & swimming are really good for ataxia i understand.
Thanks for your reply, I am sure whatever it is runs in families as my maternal grandfather seemed to have similar symptoms as I remember, but of course even less was known then. He just took to his room eventually and never came out!
A ragwort fork is a T handled fork (very robust) with 3 tines for uprooting ragwort from pasture. I bought it for that years ago, but it's excellent as a walking aid as it grabs the ground as I walk and I feel safe. I'm on grass most of the time. I have nordic poles as well which I don't find as good.
I could no longer cycle or swim to save my life! I used to do both, and horse riding was my business and hobby some years ago. Dancing I've never been good at, two left feet I'm afraid.
The main exercise I get now as the dog is no more, is cutting the grass. I can mow as the mower is a prop. But about 10 minutes is my maximum too. I can at a pinch do more, then have to rest for ages and think about continuing if I can.
Feeling buoyed up by the replies I must say. thank you one and all.
If you feel safe using your ragwort then all the better. Anything that prevents falling or near misses is grand! I used a pole with spikes on the bottom whilst walking many years ago & it saved me. Brill.
Unfortunately i can't cut grass now. We've gotastro turf. Looks good all year round!
As for cycling. I used to go spinning but ataxia put paid to that. I use a recumbent static cycle now. It's great. No fear of falling off with it having a proper seat & handles. I do all exercise seated.
Whatever you can do is good. Research has proved eating healthily, having a healthy lifestyle & exercise may ward off Alzheimers too, so im doing all i can lol!
Hi Sharon. No it's not Barbara it's Anita but that doesn't matter! I agree that anything that helps you feel safe is a real asset. My ragwort fork is excellent although I occasionally throw up clods of soil on it. If I do go out off the premises (never without my husband) then I do use a walking stick which is better on concrete or similar. But I trust husband's arm more than a stick then.
I like to think I eat healthily, but I find cooking incredibly hard now and tiring although I love it. Not helped by my husband and I being very disparate in tastes nowadays. He's the one who's changed, not me! Once or twice I've overbalanced onto the cooker and have been lucky not to burn myself.
Some excellent tips. I am lucky because my family can help with our animals (we have a small holding, the remains of my Dad’s farm).
We have a rescue dog (when our dog died we decided me and a puppy would not work). Our cat died recently and we got me a fully grown rescue cat which I can look after and is good to stroke (therapy).
I loved walking around our fields but could not so I asked on the forums for tips and a chap in US on Living With Ataxia does marathons using a converted baby walker. (I found one on Ebay). They have bigger wheels. You probably cannot get out but it could help someone else.
I am not very stable and need a 4 wheel walker and I have a good one with big wheels that goes on gravel (so I can sit in the shade outside).
Thank you. Everything helps when you know you're not alone. I have a lot of steps, indoors and out, to negotiate so a walker would pose a problem. I just pray I don't get to the stage when I need wheels as it would mean moving. Only having hens now I can just about manage outside, but I miss all of it.
Doctors and others years ago, when the vertigo first became a real problem dismissed the idea of it being inherited, saying I was making too much of my mother' problem and I wouldn't be like her. Now I know it can be it's halp rather than a hindrance.
Well done on the steps. You so need to stay safe though (I had a fall but did not break anything but it took months to get better and my confidence was dented). Upstairs I use a friend’s old 3 wheel walker that folds easily and my daughter likes me to use in her car. I can go up steps with it. May be get one for inside to stay safe??
Hopefully your ataxia will be slow coming on. I was lucky because we knew mine was coming and built our house with no steps.
Hens are great but we have a lot of trouble with foxes eating them! We have one left who escapes but her days are numbered x
Dear Anita, A HUGE welcome to this site! You'll find lovely people on here for support and advice! I reside in the USA, State of Michigan and was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive,symptoms 24/7) thirteen years ago, but had very minor symptoms starting about eight years before diagnosis. No one in my family, as far back as I know, had/has ataxia except me! I, like you, was very active before this took hold! I use a cane when I leave my home, although I'm going to start using a lightweight rollator (walker) as I need more stability now. Your ragwork fork sounds brill! Whatever helps one get around and feel safe! I try to exercise (I have to hold onto something sturdy or lie on the floor, which can be a challenge to get back up...,ha!) for strength and balance and eat as healthy as possible! You are not alone in your journey, as there are many of us out there! Stay safe and my best to you..., ;o)
Thank you so much. What a lovely group of people I seem to have found. At the moment I exhaust myself with the daily grind without extra exercises, but I'll bear it in mind as I try to stay in reasonable physical shape as I can. I'm overweight now which doesn't help. Getting down on the floor is fraught with problems trying to get up again, yes! Same with my husband as he has severe rheumatoid arthritis apart from heart problems. If down on the floor together we are a laugh a minute as we crawl round trying to hang on to things and grasp anything to help us up again. At least one can still laugh.
Dear Anita, I laughed at what you said if both you and your husband are down on the floor and trying to get up...,lol! I know EXACTLY what you mean, as once I'm down, I have a really difficult time getting up too, and find myself laughing...,ha! You have a great sense of humor, which I admire so much! Yes, keep laughing, as it's good for the soul...,lol! Hugs..., ;o)
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