How Does Your Head Feel With Ataxia? - Ataxia UK

Ataxia UK

3,484 members3,834 posts

How Does Your Head Feel With Ataxia?

rideabike
rideabike

I can't seem to find an answer to one of the most bothersome symptoms I have and that's the spaced out, disconnect feeling in my head. I call it being inside a bubble. My eyes feel it but it's always there like a peripheral detachment around me. Is this common? The type of ataxia is unknown or sporadic late onset of unknown origin. I am alone with this problem so any input from people who share this feeling would help.

49 Replies

You are not alone, I experience similar myself and I’ve seen numerous posts from other people with different types of ataxia.This sensation is disorientating, and can sometimes last for days at a time, most people refer to it as being foggy headed. Being detached from normal surroundings really effects concentration.

rideabike
rideabike in reply to wobblybee

Thanks for the reply wobblybee. Yes the detached feeling does that but it never goes away and is constant 24/7. It began shortly after a thyroidectomy in 2012 so I'm wondering if there is a connection. The tumor was large for that type of cancer but at the same time I realized I have celiac disease and stopped all gluten 8 years ago. I never mentioned these two things to the neurologist and he never asked about celiac. It now has me wondering if the cause of ataxia is connected to either one or both together. Maybe a perfect storm.

Apathy and loss of pleasure took over but it hasn't squashed me and I'm not depressed.....if you can figure that one out 😀...I still have a sense of humor and chuckle about things often. I think it's all part of whatever area in the brain has been affected. I'm not taking any drugs for this. It's just baffling to me but I guess the research keeps me going.

coat2003
coat2003 in reply to rideabike

first thing first.1st thing my neurologist asked me do you suffer from cealiac disease? no.b ut I HAVE MANY FOOD ALERGIES. I inhereted another "goodie" after my paternal grandma an under active thyroid. still on meds for it, no surgery, no goiter, yet.actually she inhereted from her pa ataxia.she was an uneducated village woman who never exercise, but lived to 72. which is a good age in slovakia.

rideabike
rideabike in reply to coat2003

The neurologist I saw didn't ask very many questions. He wanted to know how often or if I used alcohol or drugs at all in my lifetime, his main concern. I might have disappointed him by answering not much of either. I didn't know about gluten ataxia at the time or I would have mentioned it. I'm not going back to him. My Iron is too high 264 way above where it should be. Never had it happen before.

coat2003
coat2003 in reply to rideabike

no idea how iron influences thyroid, will investigate. but vit b works on strenghtening the nerve system.

rideabike
rideabike in reply to coat2003

I'm not sure what is causing iron build up but probably not thyroid gland since I don't have one and TSH level is good. It's a mystery.

coat2003
coat2003 in reply to rideabike

i'll ask my gp.Very good one.mx

🤔I wonder why your Neurologist didn’t take a full medical history...Did you know that you can be tested for Gluten Ataxia, and that you could be right about your thyroid ..In the case of Gluten Ataxia, the first line of treatment is a strict gluten free diet (which you are doing), but I have read posts from people saying that this hasn’t made any difference.

Hypothyroidism can present with ataxia as presenting feature. Hypothyroidism should be considered in all cases of cerebellar ataxia as it is a reversible cause of ataxia. Hypothyroidism is a common medical condition in the general population.16 Feb 2016

scielo.br › scielo

rideabike
rideabike in reply to wobblybee

With no thyroid gland hypothyroidism can happen in the beginning with medication adjustments but it's mostly been hyper for the purpose of thyroid suppression to prevent the return of cancer. So far so good. Recently it dropped very low but is not on track again. It hasn't changed the head in a bubble. Will look up the website. Thanks again!

coat2003
coat2003 in reply to rideabike

any hormonal changes, whether natural or a disease.Natural reason goes away on its own, a disease may be trickier, consult a gp or a specialised thyroid doc.true not ALL meds work.so do more trial and error.good luck!mx

rideabike
rideabike in reply to coat2003

Thanks I am waiting to see a physicist who does diagnostics and treatments. He can't help with some things but may be able to find the source and order tests the Neuro did not. I hope so anyway.....Thanks!

coat2003
coat2003 in reply to rideabike

GOOD LUCK!mx

rideabike
rideabike in reply to coat2003

I meant physiatrist.

rideabike
rideabike in reply to rideabike

A physiatrist does EMG muscle testing and other diagnostics. Not a psych doctor although some might think there is a need ....🤣

rideabike
rideabike in reply to wobblybee

I felt the Neuro was very negligent and wrote to him afterwards with these symptoms as I researched but he never replied. I will have to wait for some time to see another one but after the physiatrist appt. I may have more info.

wobblybee
wobblybee in reply to rideabike

It’s not surprising to hear of ‘less than complimentary’ comments about Specialists, or Neurologists. I’ve had my own bad experience, and it doesn’t inspire confidence. Some are amazing, but some really let the side down. I hope your next appointment is more helpful 🙂

coat2003
coat2003 in reply to rideabike

I am extremely fortunate, living in Liverpool top notch neuro.....Walton centre cater for North Wales and Isle of Man.

rideabike
rideabike in reply to coat2003

I read and YouTube EU ataxia and neurology all the time. Great place to live if you have these issues.

I can certainly relate to this. I’ve learned a lot from the psychological work I’ve done, and this has helped massively, especially in the areas of connecting with other people.

Peter

coat2003
coat2003 in reply to chelpet

it all works, sometimes we concentrate on physical condition, and it ALL NEEDS to alter the psyche and all is better, more managable...80% is in the head, 10% physical co dition, 10% other in or out influences, but all depe nds how easier/harder managable if FULLY ACCEPTED and one is looking after her/himself!

rideabike
rideabike in reply to coat2003

The way my head feels is physical. I can overcome it to function but Yes the psyche management is the key to functioning. We don't get the comprehensive ataxia help in Canada as much as the UK. Knowing a bit more would help so I have to be the one to track down available resources. This website has been my support system for quite awhile. 🙄 I appreciate it so much and all of the responses help to maintain the psyche in good shape. Thanks!

coat2003
coat2003 in reply to rideabike

sorry I didn't realise in Canada. keep positivity!and hope you soon sort all! no idea how it all works there with mri scans if it evens recognises changes lesions on cerebellum.Mine is well shot, an old shrivelled prune UNLIKE MYSELF:) ha ha ha mx

rideabike
rideabike in reply to chelpet

The brain can overcome a lot of damage and build new pathways so I work at keeping busy thinking!! Chuckle haha...must laugh too as crying hurts my throat muscles too much.

coat2003
coat2003 in reply to rideabike

brain can overcome a lot ONLYinherited damage cannot be fixed yet. I write yet, as it is all a q.of time, more research needed in stem cells, I'd even go and claim a brain transplant.I cld do with one, cerebellum and my face ha ha ha (wld pull more than a plug:)monika x

rideabike
rideabike in reply to coat2003

Yes I see the problem (not the face haha😎) and you must have a genetic link to it. I'm an oldster, like a good ol' roadster car. I break down a little more often now. 😂

Are you taking any useful supplements? If so let me know. I'm experimenting with Mannitol and B1 thiamine hcl.

coat2003
coat2003 in reply to rideabike

I take GINKO BILOBA 6,000 mg, brain power.... i take no BLOOOOOD THINNERS, no meds just vit. and medically prescribeedd vit d3 20,000 uc.... stronger, other over the counter, but stronger nevertheless.vit b complex, I started niacin, but if I take vit b complex, niacin out...vit c 1.000mg. I am a bit irregular when I remember.I exercise more...also soluable iron...soluable mostly, as my swallowing was dodgy 2 years ago now. bbut easily choke it is more to do with incorrect breathing.I sort of have to do it consciously, had bigger probs. But 2 weeks only, spoke to a clinic...gave me tips swallowing.if it gets worse, more investigation...xray...thank god better.I read somewhere online some cell stem research, but needs more, reversible for 3 months ONLY ATAXIA. Quite frankly WLD UPSET ME MORE, being ok for 3 months and back again...I am using a waker/rollator on 4 wheels, NOT VERY GLAMOROUS, but then again I was never a glamour puss, much more down-to-earth,for others boring sensible and not fashionable, old fashioned.Relaxed is more important for me, old tshirt, bottoms, slippers/shoes older the better.comfortable, no tight and fashionable. brrrrr. I am a widow, my late hubby was 80. I am 44. He was a very young 80.not your dodery usual 80, in the gym 3x a week, lefthis own son standing, working 10x harder then a lazy sod of his son.cldn't keep up.We sort of levelled up age 60.:) these english women are weird, money, money, money AND NO HUSBAND, NOT INTERESTED IN A BLOKE. I am Slovak, living 20 years in Britain...

Hi I feel exactly the same inside my head, sometimes it is so hard to explain what’s it’s going on there. My ataxia is type is unknown too... nothing happend in the past to trigger this. I work in special needs school and sometimes I feel helpless as I feel I need help myself 🤦🏻‍♀️

But not giving up I keep going as much as I can but had to reduce my hours by from 5 to 4 days a week.

Keep positive x

rideabike
rideabike in reply to aburt449

Thanks so much for the reply! Keeping positive IS my job. I can't imagine having to work outside the home with this so you must be doing something right. Giving of ourselves is healing so special needs children (or teens) probably give as much back as you give to them. So rewarding for you and I hope you can continue.

Yes I have this too, I find it hard to explain. I sometimes call mine brain fog, as if things do not connect right in my brain. This leaving me to feel brain tired, hard to concentrate, I also can miss things around me or miss what is said or miss a second of something. I sometimes feel as if I am floating around and feel exhausted at times. You can also feel overwhelmed by it all. All the best,

Suzie

rideabike
rideabike in reply to suzie44na

Sounds familiar and maybe is a bit different in each type of ataxia. I have always felt my brain has been affected by either a bacteria, virus or toxicity just by the progression of it. Take care and thank you for the input.

I found that I also had a FOGGY HEAD ,my best solution to this problem is to massage my head ,do some breathing exercises and practiise meditation...

rideabike
rideabike in reply to benning

Massaging the head sounds good....I meditate on the Bible's positive hope for mankind and go for as many walks as I can each week. That messages my brain. Walking is the best mental and physical medicine. It is just very cold right now. -17 C. Good old Canadian winter. Warming up next week but a big scarf and down coat helps for now.

I’ve always put this as fatigue as both Ataxia and dystonia cause fatigue.

I was part of an Army training team and in the early eighties we made a training video on how you behave with lack of sleep, we done 75 hours with no sleep at the end we couldn’t speak properly I seen a ship sailing though a wood and we had great difficulty in doing the most simple of tasks. I only found this out when we watched the video when we recovered TWO years later Lol.

Maybe do some Google homework on fatigue and see what you think.

I have SCA 6 Ataxia and dystonia and I am exactly the same although some would argue that have always been on a different planet.

You stay safe and keep your sense of humour my friend.

Who Cares Wins.

rideabike
rideabike in reply to paul456

Love that! I think many would say the same about me on a different planet. I try and get 8 hours of sleep a night and take a number of amino acids to accomplish it. Without that I doubt I would sleep. Wow 72 hours is a long time! Sounds like torture.

I have something like that but thought it was the daily 60mg of Prozac.

rideabike
rideabike in reply to BobR47

What does the Prozac do to help ataxia. I have apathy but not depression.

BobR47
BobR47 in reply to rideabike

I have not accepted my ataxia. The Prozac does nothing for the ataxia. The Prozac enables me to continue living despite the terrible depression.

rideabike
rideabike in reply to BobR47

It's definitely not a pleasant thing but glad it helps fight depression. I haven't found anything to fight apathy. It's not the same. I might consider trying it but will talk it over with the next doctor. Thanks for input.

It would be hard to know if it was not the Prozac unless you were off it for awhile. Probably not worth the effort.

Yes, I had that, it was not brain fog, maybe body fog, as I was able to talk and think when not challenged with moving. I am improved hugely but cannot do 'too' much or it will start again. I have Gluten Ataxia, I have slowly improved over the last 3 years but some elements have stayed exactly the same and I realise I may not improve much more. I will revert if too challenged physically. I have been told the brain needs a lot to keep the body upright, any extra input means the various difficulties resurfacing. I use my 'units' of ability carefully each day or pay the price in following days. I have a routine that enables me to achieve as much as I can, enough sleep is majorly important.

rideabike
rideabike in reply to pinjem

Thanks for the run down on your daily needs. It sounds like what I've been doing without knowing why. When I mess up and overdo it I get body payback time. Trying to get exercise without overdoing it is the challenge because I love to walk but an hour is probably stretching it. It's still a work in progress.

Are there any medications or natural supplements you're using?

Yes that "brain fog" was something I had. Didn't realise that I had it though and it wasn't until I went gluten free that it lifted. Quickly in days. Found that then I would reguarly sleep for 9 to 10 hours. I think my brain was so tired.

The Celiac UK website has lots of info about gluten ataxia, peripheral neuropathy ( where you lose feeling in feet and legs, no wonder messages don't get through) autoimmune too, which many conditions are including thyroid both hyper and hypo. Unfortunately neurologists I saw didn't mention gluten and it wasn't until a good friend who also has ataxia, said about gluten which research papers backed up, that I went GF.

You must omit gluten completely though.

Asked if I could get advice from a dietitian and my GP said no because the tests had not picked it up!!

So i went it alone. Feeling is coming back slowly. Fatigue better. Balance better. This has happened in 6 months. So gluten free for life now.

What really annoys me is professionals are just not clued up to this. Cerebellum will be effected by this autoimmune problem and if anyone has any gut problems or not, just balance issues then gluten should be suspected straight away by doctors. Because it is so easy to treat.

Do you feel like you have tight socks on 24/7?

Is sensation diminished in your limbs?

Do you have brain fog or feel like you are there but not there?

Do you feel like there is a block to messages getting though your CNS?

Do you get blocked when you try to talk. Especially when tired?

Do you suffer with fatigue?

I was scared, frightened and anxious because of what was happening to me and to be honest not one of the so called experts I saw helped in any way. Apart from one neuro physio who carried out a simple test and said he thought I had problems with my CNS. When I told the neurologist he smiled and dismissed it.

I also take a lot of supplements.

Multivitamin and minerals with high levels of all the B viits.

CoQ10

Omega 3

Vit D3

Vit C

Probiotics

And eat lots of veg, fruit and protein

Again no advice about what the brain and body needs to rebuild and get better.

What you need to do if you think you may have gluten ataxia (unless you can be referred to Sheffield ataxia clinic) is do the research and try it because it is, as I understand it, the only ataxia that may be reversed or stabilised.

Apologies if you think I have gone on too much but if just one person has a light bulb moment then it is worth it.

Stay safe everyone x

rideabike
rideabike in reply to penelope2

Glad for any information! I went off gluten 8 years ago but still have the brain fog that started after thyroidectomy. It's more than fog and is very disabling. Affects my thinking that is jumbled and yes I lose what I want to say quite often, eyes that don't see smoothly, pain in both forearms, dystonia in one leg and ankle and fatigue from just talking to someone on the phone like my brain is taxed from the effort. My speech has changed to a hoarse more gravelly tone and I extend syllables sometimes. Also run out of breath before finishing a sentence.I sometimes walk like my feet are uncoordinated or disconnected to my head so will slap my foot down to hear where it is, (a sensory ataxia symptom). Balance can be bad at times and dizzy every day.

Typing is a nightmare. I don't hit the right keys and jump over and miss things, same with writing a letter, jump to the next letter before writing the first one which causes a mess. I haven't cheated on the diet and can't figure out why I didn't improve but read that some don't improve. Or another cause.

I hope to find answers with my next doctor who might show more interest. Brain MRI was done without contrast so cerebellum didn't show up and brain stem was vague as well. Taking B1 and Vit. E just in case. I don't relish the idea of the contrast dye though.

I had severe frontal neck pain that proceeded to spread into my throat muscles about 4 or more years ago and all the swallowing and vocal muscles can get constricted now but have decreased tongue based movement limiting me to softer foods now. It is so much like what I read about but the attitude of the neurologist baffled me. If someone came into my office with serious symptoms like that I'd be a super detective until I found out what is causing it. Go figure!

rideabike
rideabike in reply to penelope2

Hi Penelope, Don't have tight sox feeling but have no ankle reflexes in either one, a neuro sign. My feet and legs are OK other than occasional dystonia, stiff walking and balance issues. Some days walking is pretty good. Several things I failed to mention are daily head and neck tremor that goes into my chest quite frequently. Essential tremor was ruled out but ataxia head tremor is called titubation tremor and fits the picture. I occasinally have fine tremor in both hands and sometimes a stronger type in left fingers and thumb, electric feeling in my arms and one hand with pulsing feelings all over the top of it. Right palm gets a feeling like someone snapped a rubber band inside.

A little of this and a little of that.

Have cold right hand, cold nose and feet. I'm taking all the supplements you suggested and I think I eat well. Appreciate your replies. 😊🌷

penelope2
penelope2 in reply to rideabike

Sounds like you are looking after after yourself really well so keep on doing what you are doing.Take care

Hi,

I have what I call brain fog too.

The main difference I have made to my routine, years ago, is to have a sleep or at least a proper rest for about 2 hours every day. The difference is enormous.

I usually get up around 9am and by 4pm I can no longer function physically or mentally. I become completely useless and all physical movements take a huge effort. Slowly I think I have made some improvements as I can now manage until 4pm whereas it used to be 2pm.

For my rest I get right into bed, put earplugs in and nobody disturbs me. When I get up again at 6pm, I just have a little sit with a cuppa and then I'm fine again (well fine for me)

I see you said that you're sleeping for 8 hours per night. If I did only that then after a few days I wouldn't be able to do anything!!

Take care. Eat well, exercise and sleep. And don't get stressed or anxious - haha easier said than done

Xx

Thanks for the tip. I do have occasional afternoon sleeps but wait until I'm ready to topple over. I should plan it each day and then I wouldn't oversleep. It it does make for a better evening. Never appreciated the benefits of sleep so much.

I have SCA6 & my head feels like a tumble drier. If I have to talk more than usual it feels like a washing machine on a spin cycle. Had vaccine on Jan 20th, lump & redness at injection site for 3 weeks, otherwise no adverse effects. Stay well & safe everyone.🤗.

rideabike
rideabike in reply to Lilielost

Thanks for the reply! Just trying to get an idea of what people feel. Glad your shot wasn't worse. Good for now anyway. Take care. 🤗

You may also like...