Why does Ataxia appear all of a sudden (I was then 58 yrs. old when diagnosed)

Confused on how all of a sudden I got this Ataxia. I feel so bad for those who have had it at an early age. How do you handle this ?

By adjusting. My doctor said I have had Ataxia for a long time but while the symptoms began about 10 years ago, they just began interfering with my life (hobbies, work, walking, memory etc.). I was diagnosed with Cerebellar Ataxia from Dilantin, which was approved by the FDA in the 70s for epilepsy without proper testing. So this is the end result. Coping has mainly to do with adjusting how you do EVERYTHING. As with most things, fighting it will only make it worse.

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If it’s not hereditary ataxia…some questions to consider…have you had a recent surgery? That’s how mine occurred when I was forty-eight. I had no idea what was happening until connecting the dots in 2015 following two surgeries in 2014. JD

:slightly_smiling_face: Ataxia can appear suddenly because of : head trauma, stroke, brain haemorrhage, brain tumour, certain viral infections, exposure to certain drugs or toxins ( alcohol, some drugs or medications).

There are many medical and neurological conditions that can cause ataxia to appear suddenly😏


The National Ataxia Foundation has entered into an agreement with Sanford Research to host an ataxia patient registry through its CoRDS patient registry. Individuals diagnosed with, or those who are at risk for any form of ataxia, may enroll at http://www.sanfordresearch.org/cords/enroll/. This will enable you to receive notices about upcoming research studies🙂xB


Good info Beryl! Yeah, I think mine is a combination of surgery and hits on the head when younger. J

I believe mine came from the 2 brain surgeries done in Sept.2015. After discharge from the hospital, I went directly into inpatient therapy. That’s the first time I heard of it. I was57 years old.

My situation is exact,y the same excepet for only one brain surgery in 2010. I was also 57.

When I was only around 6/7 years old, I had a nasty bang to the front of my head. It was in the days before seat belts. I was sat in the back of the car, my Dad braked sharply, catapulting me over my younger brother in front, I was almost concussed by the windscreen😑

I’m inclined to suspect this may have damaged my temporal lobe​:thinking: Because at one time I was thought to have Temporal Lobe Epilepsy. Years later, whiplash on several occasions won’t have helped​:smirk: Then, when you throw a genetic link into the mix…:zipper_mouth_face::slightly_smiling_face:xB

Beryl, we could almost be twins! Though our age continuum was a bit different. I was beaten down to the ground when a teen, then seizures occurred due to damage of my lower left Temporal Lobe. I was put on Dilantin and Phenobarbital…on that for five years. No seizures since due to an incredible moment in my life. In my early twenties I sustained a whiplash from a ride at Busch Gardens in Florida.
So, I’ve also on our forum seen several mentions of Dilantin as a contributing factor to ataxia…and found out only in my fifties it’s (Dilantin) use also contributes to osteoporosis, for which I’m presently taking a natural product to rebuild my bones…and wouldn’t recommend anyone to take Fosamax or the like…saw a research study from the UK just out in March 6, 2017. Fosamax and its companion meds causes micro-fractures in the bone. When I read the article to my husband he was like, “Why doesn’t the FDA tell all doctors to take women off the stuff!” BIG Pharma…I just wish the precautions would be better taken on knowing what the long-term affects of meds entail. JD

I had an aunt who eventually died after she thru-up Fosamax, had to have surgery, as it had burned her trachea. She had to have the burned portion removed and was never able to eat properly. Eventually she died from her injuries. Anyway, in answer to Vickies question, I have no idea why I have ataxia, as I was always active and athletic before this happened to me (I was diagnosed at 49 but looking back had extremely minor symptoms starting at about 43. As a child, I fell down the stairs (seeing stars…,ha!) and as a young adult, I was in a car accident causing a whiplash. My neuro says neither of the incidents cause my ataxia, although I secretly wonder. My first husband died at 43 (I was 42 and had to raise our two young children on my own). It also crossed my mind that the stress of losing him may have caused my ataxia (after all, after he died, my hair started falling out). My neuro also says this was not the cause, although I’ve always wondered (please don’t tell my neuro…,ha!), as I started having very minor symptoms a year after his death. So little is known about ataxia’s, I guess I don’t rule anything out(even though the medical experts say no). My best to you…, ;o)


I have always been thankful I did not have it when my girls were young. I have sporadic ataxia for about 21 years which began when I was 52. It took doctors 6 years to find out what was wrong with me. I now use a walker, do everything I am able to do. Do all you can on line to find out about your condition, perhaps find a support group or a pen pal on line. Knowing what other people are trying or going through will not make you feel so alone. Stay positive and EXERCISE

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listen to lin-da. she has the same thing i have but im not as bad as she is. when i learned i had it 2 years ago i did reshearch on it and found out the reasons why i fell & why i was getting the other symptoms. it doesnt happen overnight. i can remember it 5 years ago these things happing before i was diagnosed

                                       good luck

I was diagnosed at 71; balance deterioration started about 5 years earlier but only became a problem shortly before diagnosis.

I was always athletic and participated in most sports and excelled at some. I was never very good at sports where you had to wear equipment on your feet although I did manage to play hockey and ski (although not well). Given my physical capability I just thought any deficits were the natural differences in characteristics between people.

My neurologist says that they are starting to recognize that some individuals are borne with a recessive genetic variation that that doesn’t manifest itself in any incapacitating way until late in life and is likely to progress slowly thereafter. There are however many causes of ataxia and I don’t know how many fall into this category.

Two years ago I was able to walk without assistance and now I need a walker or a cane. I can play golf and walk the course as the push cart provides sufficient guidance to keep me balanced and I continue to lift weights 3x per week. When I cannot play golf I walk 6km.

At present I don’t feel any significant progression and at my age it may not advance much. The best way for me to accept this is to continue to exercise which probably slows progression and to be thankful that it did not manifest itself at an earlier age.

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Keep up with exercise that helps you maintain your balance. I took an online course instead of physical therapy at much lower cost … After regaining better balance if not done the exercises for about 8 months. I’ve noticed some loss of balance recently and I’m back to the exercises. Mike Ross the Balance Coach…his Balance Academy is where I found great help. There’s another site…I’ll need to find it…a basketball player who now has Parkinson’s put some great exercise videos, and I found those helpful also. JD