Sporadic Episodes

General
1

I just joined the site. I wonder if any other members’ Ataxia comes and goes, for no apparent reason. I will have severe balance and walking problems for about five days; then my symptoms will disappear for a few days, only to return. Now I’m at the beginning of a new episode, with balance problems but no gait disturbance yet.

Because all the scans and blood tests were negative, my neurologists tell me that the cause of my Ataxia is stress. I’m told to take it easy and so forth. To me, stress seems to be the all-purpose explanation for this condition and many others, too. I don’t understand how stress, which we all experience every day, can be the only cause of a condition that didn’t appear until I was 65 years old. Why didn’t Ataxia appear before? Why did stress express itself as Ataxia, instead of some other physical symptom?

The only physical cause I can identify for individual episodes of Ataxia is fatigue. I notice that when I become really tired, my gait and balance are affected. I would really appreciate hearing from others who have been advised that stress is the cause of their symptoms. Am I wrong to be skeptical about what seems to be an all-purpose explanation that doctors offer when they might just as well say, “I don’t know what is causing your Ataxia.”?

Thanks.

2

Welcome, Bob! I too have sporadic ataxia which is also worse with fatigue. There is also a direct correlation with the weather (cloudy/rainy/stormy) and overstimulation of my vestibular system. But sometimes it will be worse/better than at other times. In other words, there's really no predictable pattern.

I'm currently in the process of neurological rehabilitation as directed by a chiropractic neurologist, who prescribes exercises for me to do at home. I have been doing the program for a week now. Initially my symptoms are worse, which he cautioned me could happen, as the cerebellum relearns new pathways to functionality. But I am hopeful that over time I will see positive change and improvement in my condition.

Best of luck to you, Bob!

Sandy

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I was diagnosed with pdsd a few years ago for something that happened in1987. I was told this may of triggered my ataxia. Depending on my mood seems to how walk and effect s my balance.

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hi Bob flair up can be common in ataxia I have them often this can happen when your over tired or as you have stated stressed,

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I experience the same symptoms as Bob and sandy and the same lack of accurate diagnoses. This is a complex issue and most neurologists have an education that is focused on more specific symptoms, and can do genetic testing. It all gets down to the bottom line that stress is the main factor in most diseases and it is good to meditate, use Young Living essential oils (others are not as pure), do yoga, walk, eat a healthy diet such as the Paleo diet, have a good support system, and a therapist if overwhelmed.

I am still looking for a neurologist who understands gluten ataxia, but do a lot of self-care in the meantime. I suggest you see another 2 ataxia specialists.

Good luck. I hope you pin this huge challenge down.

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My ataxia is always there and the episodic stuff sounds like a plus, like my Dad's tinnitus which comes and goes. In my case, an autoimmune issue is said to be behind the thing. This is based on the presence of damaging antibodies in my blood. To rule out cancer, (which starts with ataxia in a very small number of cancer cases) I gave taken numerous tests. Stress-- it does sound flimsy but maybe it's true; maybe you are very wound up or maybe something happened and allowed all the "bile" to come out? Dunno. Obviously, I don't know you. In my case, I was told to, at some point, see a shrink because I could not "accept" my fate. Who can? I did see a psychiatrist (who has every expectation that I will renew our chats) but I still don't understand why (unless I am not seeing something). I mean you can't argue with MRI's that show atrophy of the cerebellum or weird bloodwork that shows the presence of a high number of "bad" antibodies.. There is alot of vagueness in ataxia. No one seems to talk about it either. N

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I found the cause of my ataxia. My doctor did not give me an explanation why I had it. I began research on the Internet. I started putting in ataxia and the names of the drugs I had been taking. I found the answer it was an antibiotic called minocycline. I went from being unable to walk across the room without falling to surfing again. I still have symptoms and flare ups but an 80 % improvement.

Did you know chemotherapy can cause ataxia?

Try going gluten free.

I hope you find the answers. It makes it easier to know.

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Hi Bob i dont know if you have heard of episodic ataxia ,, thats what i have been diagnosed with i have episodes of severe fatige, vertigo blurred vision , loss of balance etc which comes on and lasts for days/weeks/. I first started experiencing symptoms at 31 it was suspected that i had ms but after normal mri, bloods etc it was rulled out and then of course it was put down to lifestyle, being a mother , wrong diet . i sought a second opinion and the new neuro diagnosed this as it fit my symptoms i used to be normal between episodes but now unfortunately it might only take reading a book or driving for too long to bring on an episode! i dont know if any of this is revelent to you but it might be worth looking up episodic ataxia! I am now 36 and have learned to cope with this but its still not easy. A good doctor makes all the difference. I hope you find answers.

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Great Sandy, I think if you stick with the exercises even though they are hard. I have done this a few times and am starting again (3rd time) and I really see it's made a real difference. Go Girl! :-)
Sandy said:

Welcome, Bob! I too have sporadic ataxia which is also worse with fatigue. There is also a direct correlation with the weather (cloudy/rainy/stormy) and overstimulation of my vestibular system. But sometimes it will be worse/better than at other times. In other words, there's really no predictable pattern.

I'm currently in the process of neurological rehabilitation as directed by a chiropractic neurologist, who prescribes exercises for me to do at home. I have been doing the program for a week now. Initially my symptoms are worse, which he cautioned me could happen, as the cerebellum relearns new pathways to functionality. But I am hopeful that over time I will see positive change and improvement in my condition.

Best of luck to you, Bob!

Sandy

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Hi Bob, I believe your right about stress making ataxia worse, aeast that's true for me anyway! Since I can only talk about my experiences with Sporadic Spinal Cerebellum Ataxia.

I always have symptoms of it. But it seems to be better overall by staying away

from stressful things as much as possible and

I constantly work

on its not to stress my self out like I used to. I used to live on stress. I was a busy hairstylist that went on time limits per client and I jammed them in. I'm retired now and find my ataxia has gotten better. But I really think our foods we eat can also create stress in our body, and our emotional state etc.

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Jeannie Ball said:

Hi Sandy I am interested in the exercises he or she gave you at home if you would lke to share them thanks so much Marjorie
Great Sandy, I think if you stick with the exercises even though they are hard. I have done this a few times and am starting again (3rd time) and I really see it's made a real difference. Go Girl! :-)
Sandy said:

Welcome, Bob! I too have sporadic ataxia which is also worse with fatigue. There is also a direct correlation with the weather (cloudy/rainy/stormy) and overstimulation of my vestibular system. But sometimes it will be worse/better than at other times. In other words, there's really no predictable pattern.

I'm currently in the process of neurological rehabilitation as directed by a chiropractic neurologist, who prescribes exercises for me to do at home. I have been doing the program for a week now. Initially my symptoms are worse, which he cautioned me could happen, as the cerebellum relearns new pathways to functionality. But I am hopeful that over time I will see positive change and improvement in my condition.

Best of luck to you, Bob!

Sandy

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Dear Bob, First of all, welcome to this site! There are wonderful people on here that can offer support and understanding. Your symptoms (comes and goes) sound like EPISODIC ataxia, rather than SPORADIC ataxia. I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause) eleven years ago (I'm 60 years young now...,ha!). I have my symptoms 24/7- problems with gait/balance, dexterity, speech, swallowing and vision - they never go away! Have you had an MRI? Mine shows atrophy of the cerebellum, worsening a bit with each MRI I've had (one every 5 years thus far). My symptoms have progressed over the years. So far I and my neuro have no idea why I have this, as no one in my family, as far back as we know, has/had ataxia, except me. My neuro says stress does not cause ataxia, although stress, tiredness, weather changes, etc., as others have said, can make symptoms worse. There are so many things about ataxia that are not yet known! Any way, I'm by no means an expert, this is just my opinion and what I've heard and read in the past! My best to you..., ;o)

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Jeannie,

Thanks so much for your encouragement!! :)

Sandy


Jeannie Ball said:


Great Sandy, I think if you stick with the exercises even though they are hard. I have done this a few times and am starting again (3rd time) and I really see it's made a real difference. Go Girl! :-)
Sandy said:

Welcome, Bob! I too have sporadic ataxia which is also worse with fatigue. There is also a direct correlation with the weather (cloudy/rainy/stormy) and overstimulation of my vestibular system. But sometimes it will be worse/better than at other times. In other words, there's really no predictable pattern.

I'm currently in the process of neurological rehabilitation as directed by a chiropractic neurologist, who prescribes exercises for me to do at home. I have been doing the program for a week now. Initially my symptoms are worse, which he cautioned me could happen, as the cerebellum relearns new pathways to functionality. But I am hopeful that over time I will see positive change and improvement in my condition.

Best of luck to you, Bob!

Sandy

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Hi Bob, I’ve had Ataxia for 15 years and no longer see a Neuro. Ataxia comes in many forms and for many reasons but I’m certain that Stress does not CAUSE Ataxia’s. It does make Ataxia symptoms worse and may have triggered its onset. You probably need another doctor since this one doesn’t understand the disease or isn’t willing to explain it to you. Unfortunately most of the doctors are poor when it comes to understanding Ataxia. If you decide to find another doctor go to an Ataxia clinic as you are likely to get better info. And learn from others here and Google the Internet. Over time you will learn more about what you may have. I don’t go to a Neuro because mine is awful and I have an excellent primary doctor to discuss any new ideas or Ataxia concerns with her. What few treatments that are in use are experimental and nothing works consistently. Essentially there is no treatment. My primary doctor makes any referrals or tests we both think make sense. I do have an excellent neuro-Opthamalogist who knows far more about SCA than my Neuro. There are only 2 in Oregon. They’re hard to find. As far as symptoms go mine come and go as well and I’ve learned that stress makes them worse as well as certain dietary practices. Also inactivity makes them worse. As hard as it is moving around has made big improvements for me as well as discovering food allergies. I am now able to handle much more stress than when first diagnosed. I retired 3 years ago and simply took a breather from day-to-day work stress which I believe has also helped. And I use a c-pap machine which I believe is having a big impact on my fatigue and the improvement I’m seeing.

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Hi Bob,

Like you, I used to think that when doctors did not have an answer, they took the easy way out and said “it is stress”…
But now, after reading a lot about different kinds of medicines from around the world, I realize that many of our ailments are caused by the erratic, chaotic, hurried life we live. In a word, by stress. I am not saying that ataxia is caused by stress. But I believe that stress can make it worse. Some people handle stress better than others and it does not affect them. And some give meaning to the sentence "making oneself sick about something…"
I now believe that no matter how healthy our life style can be, we still can get sick. Why is that? Doctors do not know why I had a stroke that brought on my ataxia, I never smoked, I ate very healthy all my life, drank an occasional glass of wine, was very athletic and practiced all sorts of sports since I was a child, ran for 35 years, never was overweight, and then, boom, at the age of 68, I had a stroke. No medical reason for it. But I can tell you that I was under a lot of stress at the time…

I have a friend who, for several years, has suffered from stomach aches. Tests are always negative. She recently saw a new gastroenterologist, who after examining her, reading her tests results and talking to her, told her that she was not going to treat her. " No, no pills for you, nothing is wrong with your stomach. You need to deal with the problems at your work place. Either you accept those problems for which you are not responsible, or you quit your job. I cannot treat you for what does not exist. Your stress is causing your pain" .
I know quite a few people with very serious illnesses and 3/4 of them have had a lot of stress at some time in their life whether a difficult divorce, financial problems, serious problems with children etc…
Look around you, you might discover the same.
Most of you have heard of stomach ulcers caused by stress. Well, if your stomach can produce more acid when you are under stress, why couldn’t another organ be damaged by stress?

I am not trying to convince you of anything but trying to explain what western doctors are slowly beginning to take into account, the mind / body connection. It is difficult to believe what we cannot understand. As Dr Lissa Rankin says in her interview ((click on this link below
http://www.thesacredscience.com/screening_lissarankin/
Doctors are not quite sure what to do yet with this theory, but fortunately, there is a grassroots movement trying to integrate it in their practice.

Best wishes to you and everyone on this site.

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Hi Bob,

I have Episodic Ataxia. It can come and go for no apparent reason, but there are certain things that trigger it more often than others. In my case it often follows orthostatic hypotension (OH). After getting out of the car I get OH, which is some dizziness. That varies in strength depending on how long I sat and how low I sat. As the dizziness subsides though, I often get several minutes of ataxia, then it seems to get better, and then I get an other bout of it though a little less strong. I usually do not fall down from it but there were times when I totally collapsed. Between attacks I am usually totally normal. There are times when it hits me in mid-stride though. Again, it usually lasts seconds to minutes, which is why I have type 1. If your attacks are lasting longer then it would be one of the other 5 types of Episodic Ataxia. Anything can trigger it: a change in position, like for me, or stress, or dawn, or laughter, or seeing something, etc., anything. Some physicians believe that there is no purpose in finding out what type you have because there is no cure for it anyway.

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I understand there is a thing called episodic ataxia. I am well worn out at the moment and don't have any enthusiasm for work. My gait etc gets worse with tiredness but I think that this is normal because humans don't function so well when tired anyway. I am seeing a neurologist who says I should do things slowly which is basic commonsense anyway. Take things at your own pace and see what works for you.Good luck. Ivan

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What people with episodic ataxia often do not know is that, though it affects the cerebellum’s function, it does not do anything to or with the cerebellum as a whole. In other words, there is nothing in technology that allows a doctor to see episodic ataxia. The cause is a malfunctioning in the way some cells “digest” potassium. The cells are still there, only a few of the cells are affected, and they malfunction only some of the time. What makes diagnosis not possible in the near future (except by excluding everything else) is that the type of cell it affects exist almost everywhere in the body and researchers do not even know yet what the function of this cell really is. It just exists in the cerebellum in higher amounts.
Since it affects the cerebellum function EA can affect anything in the body that moves and needs to be coordinated.

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Norbert... That is the best explanation of episodic ataxia i have ever heard. i have been diagnosed with episodic ataxia with over a year and could not get the involvement of the cerebellum and why it could not be seen in an mri. Thanks to you i finally understand this.!

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Norbert,
Thank you. Your explanation was as close to a scientific and clinically sound explanation as I’ve come across yet. Do you know if there are any professional journal articles that support this hypothesis? I just wonder why more physicians, including neurologists, aren’t aware of it.
I’ll be consulting another neurologist in the near future. However, I am gradually coming to terms with the fact that all posited cause of Ataxia are either vague, speculative, or both. Even if the cause(s) could be identified in every case, it seems that effective treatment approaches haven’t been developed yet.
Fortunately, physical therapy helps me. It’s harder to do than taking medication but probably better for my overall health. Reading the experiences reported on this site is also helpful because it’s brought home to me that my case is far from unique. I am sorry to learn, however, that there are do many other people out there dealing with this difficult condition.
Have other folks achieved some measure of relief from their symptoms through physical therapy? Thanks.
Bob