Dizziness, good days and bad days

General
1

How do you describe your dizziness? Mine is like nothing I've ever experienced before all of my ataxia symptoms started. It's kind of like a shifting sensation, but not vertigo. I feel like someone drugged me or something and it always gets worse as the day goes on. I was trying to explain this to a doctor and it's tough... it's not lightheadedness, but it's a really weird dizzy feeling. Do you get what I'm saying?

Also, do some of you (maybe only those who are pretty early on in their disease) have some days where they don't feel their symptoms that badly? Yesterday and today I haven't felt that crummy (except I'm dizzy now), but 3 days ago I was awful. I wonder if it's because on the days I feel awful, I do a lot of resting, and then my body feels better a few days later? It's strange. I wish I could feel this "not bad" every day!

-Runner

2

I was diagnosed eight years ago and I still have days where I feel like I can work and feel ok. Sometimes just the first half of the day. My SCA7 is supposed to be mild to medium. On a bad day I cannot get out of bed. On a good day I feel great until I try to walk. Sometimes just a 10 minute sit down can make me feel less wrong. I say.wrong because I do not feel sick and it is so hard to explain.
What frustrates me is that SCA7 is so rare no drug company is going to invest in finding a cure and Governments are more interested in spending on killing than curing.

3

I know exactly how you feel its almost the same as me but your right its hard to tell someone else how it feels . My dizzy is ok first thing in the morning but after an hour or so it starts getting slowly worse , often when i’m driving i feel like i’m drifting on to the wrong side of the road but i know the car hasn’t moved lanes . I’m still waiting for an official diagnosis but have a perlimanary spinocerabellar one its been 18 monthes with symtoms now , had my first genetics test about a month ago still waiting for results

4

Wow. I feel the same way. Resting helps, then I feel better. Then I have activity and I feel horrible! Yesterday I went to my part time job, then walked for 30 minutes, and did light weight lifting. Today is a painful day. As time goes on (I had ataxia for 9 years) the rest times get more frequent.

You're right about dizziness. A doctor once described the sensation as the feeling you have just before you fall asleep. That's the closest description that I found. But most people understand dizziness so I just use that because they understand it. But the sensation causes me to be very careful doing everything because it is like a shifting. I've been to neuro eye doctors, neurologists, primary care docs, etc. but no one can find the cause or know what it is...

5

i use travel bands on my wrists. it works for me. excpt somtimes when i exhaust myself.

john c

6

Hi, Runner,

You are right it is hard to explain, but we all know what you mean!
Here is how I describe it: I feel tipsy, or drunk if you prefer. I never drank much before, because I never did well with alcohol, may be a little wine with supper, but now I do not want to touch any alcohol. I am drunk enough all day long as it is. The relief comes when I lay down, although, like you said, I still feel a little “drugged up”. And yes, the dizziness is worsening as the day goes by.

dlc, the reason I was given for this dizziness (like you, I use that word for other people), is that the part of the cerebellum that controls the balance is affected by the degeneration. In my case, although different because coming from a stroke, it is not progressive, but the symptoms are the same.
Like you, I went to all sorts of doctors and some thought it was an ear problem, but right away the ENT doctor said it was from the lack of balance caused by the stroke, not by an ear problem, which my neuro had told me, but I did want to eliminate any possible cause.

Look at babies who are just trying or beginning to walk. Their balance is not quite developed yet and they wobble like we do but as time goes by, they do gain stability.

I also have some very bad days, so I do not do much those days. I think we have to pace ourselves and do what we can when we can. We are all different, but all in the same swaying boat… :slight_smile:

7

Wow finally someone else like me, you poor soul I suffer 24 7 from dizziness it is the worst my heart goes out to you.

No one understands

8

To me, it is like walking on a 2x4 that is on it's side and not secured. I have good days and bad. I keep a daily journal and I have noticed that my bad days have a lot to do both with heavy activity and also with the weather. Rainy days seem to be the worst.
I have learned not to fight it when my body says it needs some downtime.

9

I completely get your description, especially when you mentioned “a shifting sensation”. I also find it hard to describe to a doctor. It is unlikely anything else except, maybe, of being stone drunk. Just as there are levels of being drunk, there are levels of EA. I can be so bad that neither my arms or legs or trunk work, or I feel it just enough to take a step or two sideways. In between there is no problem at all.

10

I feel different from day to day also. I always described it as being on a boat in a rolling sea. But, now it is worse than that on some days, drunk feeling, unsteady, loopy. I think dizzy is different. I was bad this morning but actually improved this afternoon. I came home after I helped at my church fair, and had a nap , and was better. Of course, I still was doing wall- walking, but I was able to "do stuff". Rest and walk slowly. This isn't going away, so we must adapt.

11

I search Spinocerebellar Ataxia (SCA) websites for recommendations, current research, and disability issues, etc. They often help to distinguish between current theories, legitimate studies, and scams. There are many people all over the globe like me. People with ataxia tend to be a positive, but realistic group of information–seekers and givers (not always, but generally). The periodic venting always stimulates an empathetic discussion that never starts with the words 'At least...' I find the discussion helpful, as well as enlightening. It's better to be primarily hopeful and not hopeless, but continuous positivity just isn't my style. I'm happy to have the occasional solitary 'Pity Party'*.

Although there are over 40 different types of ataxia, the issues confronting affected persons are similar. Since ataxia is characterized by a loss of coordination, often people's balance, gait, and speech is most noticeable to the uninitiated. Through reading web posts, I've come to realize most people with ataxia lie somewhere on a spectrum. As usual, I'm somewhere in the middle symptomatically. There are those more or less affected, people at different life stages, financial levels, varying village sizes**, and approaches to coping with a chronic disorder.

Two themes seem to be universal on ataxia websites. Firstly, everyone wants their ataxia to go away, get dramatically better, or be curable. Spoiler alert—it won't, it's not likely to, and it's not. Certainly various devices, supplements, and strategies do make a difference in managing ataxic symptoms, but that varies from person to person. Secondly, people are often mourning the person they used to be—the runner, the mountaineer, the worker, the intrepid traveler, the jazz dancer. That's often a big factor in their process toward acceptance of ataxia***. So far, my coping strategies keep me doing what I can and are effective more often than not. I stay in the game, get up every morning, value my village (pardon the pun), scoot, and blab, blab, blog. Although my effort toward acceptance is usually on an uphill trend, I haven't found it to be a straight line. Like life, some days you're the bug, some days you're the windshield.

The websites also reveal those who are trying to figure out what is due to ataxia and what is due to age. I figure since both are progressive and incurable, it probably doesn't much matter. I just follow treatments the website contributors recommend—good nutrition, exercise, and sleep.**** That works for pretty much everything anyway, and they're free.

People with ataxia and their loved ones want to be able to predict the neurological progression of the disorder. Wouldn't we all? Since the cause of the disorder, age at onset, and manifestation of symptoms vary, so does the progression. The best piece of advice I ever got was to take one day at a time. Everyone, even in the same family, is different (duh).

At some point, we all embark on the 'Eternal Quest' for an answer. I'm all for seeking appropriate treatment from knowledgeable physicians and expecting respectful care. But when I found myself getting angry for various unfounded reasons, I had to face some hard truths about both me and ataxia. No one was going to give me an answer to something that had no solution. Spinocerebellar Ataxia (SCA) is an orphan disease in that it's rare and most people, including many healthcare providers, don't know much about it. I live with it and did the homework. It wasn't a particular provider's fault that I knew more about my condition than most health professionals.

I did see a neurologist who specialized in the Group of Movement Disorders (Parkinson's, SCA, Huntington's). She answered all my questions, helped me apply for disability, encouraged me to read the research literature, and wrote the 'I'm Not Drunk' letter*****. But she made it clear that there was nothing else she could offer beyond symptom management and annual follow up. She also cautioned me to be skeptical of cure or treatment claims.

The lesson: There is likely no 'Holy Grail' for Spinocerebellar Ataxia. It is what it is.

*Previous post: Pity Party––Underrated??

**Previous post: Where's My Village?

***Previous post: Snap out of it!

****Previous post: Skeeter, My Exercise Buddy

*****Previous post: But officer, I'm not drunk

Blog address: http://schumant.blogspot.com

12

Hi Runner. I describe my "dizziness" as looking crosseyed without the double vision just the feeling and only when I move my head. Shopping and even walking is a nightmare. my husband refers to it as my zombie look.

13

Thanks for your responses. I guess the more I think about it, it's like a really weird sensation of things kind of moving but not in a vertigo way. For instance, when I look at something (like someone I'm talking to), after a few seconds they become really focused and the background gets weird. It's almost like the object I'm looking at is moving towards me, or I'm moving towards it in a whooshing movement. It seems like a focusing problem with my eyes/brain. Does anyone else get that?

14

Most mornings I am OK for the first hour and then this 'nausea kind of hangover' grips me. My wife looks into my eyes and sees that my pupils are dancing more than usual. My focus is shifting but not spinning. I usually come out of it by midday or early afternoon. Yes! Corkey. Zombie is a good analogy.

15

I do get dizzyness in the morning when I first wake up, but it is more like vertigo. I have been taking Dramamine which helps considerably and take that throughout the day. I also take a decongestant which gets rid of the overall dizziness to a degree . I describe my dizziness more like a feeling that my brain is floating. Like 1 of those clear balls with the liquid inside and stuff floating in it. I have a problem changing direction when I’m walking, or looking both ways to cross the street. That is when the dizziness is very pronounced.

16

As a rule, my blood pressure runs low and I was told recently (by a doctor) to make sure I eat on time and drink plenty of liquids (especially water) thru-out the day. Therefore, I drink TONS of water, especially when I first get up in the morning. Doing this seems to help me. I wonder if this contributes to my "dizzy" feeling at times? Mine is not vertigo either, Runner, and the way you describe it is definitely the way I feel also! Also, although I have ataxia 24/7, some days I feel worse than others (more fatigued, etc.). I've come to realize there's no rhyme or reason to this. After eleven years (when I was first diagnosed), I don't even try to figure it out anymore, as, for me, ignorance is truly bliss...,ha! I just try to focus on one day at a time and do the best I can... ;o)

17

Diagnosed a year ago with late onset Ataxia and It has progressed so quickly!!! I am no longer working. I’ve been retired since 2015 but continued working at “funner” jobs - that I thoroughly enjoyed, until an episode at work this past August 2020 ended all that. My neurologist confirmed …" you cannot work on your feet even for 5 hours". So, I’m trying to find a PT Work From Home gig

Tight leg muscles and neuropathy in both feet in the morning are common. Enjoy a few hours feeling "normal, until the waves of heaviness in my head cause me to use the wall and furniture to support myself. Sleep is a blessing (9 to 12 hours). My son-in-law ordered me a shower seat, which I fought initially. But, now I’ve come to so enjoy as it has reduced some stress.

I try to encourage myself: “Though I’m slowing down, it won’t keep me down”.

Thank you for your honest and well expressed experiences. It has so encouraged me.

Gratefully,

Lori

18

Hi Lori, welcome :slightly_smiling_face: It’s heartening to know you find the community encouraging :slightly_smiling_face: I gave up work early because I found multitasking became impossible, ataxia can effect us so differently.

19

Welcome to the site Lori.