I’m wondering if any of you had this too. Or have an explanation?
A few times now I’ve had this. While suffering from something else - be it fever or kidney problems - I experienced a sudden, complete loss of muscle tonus, causing me to sink to the floor and not be able to move. My speech became very slurred. My husband had to drag me like a dead body to the bed and try to get me up there. The next morning all was back to normal. Very weird!
That’s very strange. Can’t say that I experienced that but it must have been scary!! 
I’m so sorry..that experience must have been frightening…for both you and your husband. I’ve ’passed out’ and fallen…but in my case it was linked to DeJa Vu episodes (thought to be Epilepsy or Silent Migraine).
For peace of mind you should definitely speak to your GP about this.
Thank you for your reactions. Yes, it was scary, but mainly in hindsight, because I can’t explain it or do anything to prevent it from happening again. I’m seeing my neurologist this week, so hopefully I’ll get some answers then…
Manja,
As I’ve noted in previous replies I’ve written, as much as we’d like to find parallels with fellow patients, we are all so unique in our metabolic, physical and brain chemistry.
This can be frustrating when such incidents you experienced occur.
For what it’s worth, my immediate thought was were you hydrated and had eaten recently? I’ve noticed that until I’ve had breakfast my brain and body doesn’t function that well until they receive sustenance.
Historically I’m a person who can easily forget to eat during the day and now become acutely aware when I need to eat.
Hopefully you fall into the same category and easily avoid future incidents,
Regards, David
Thank you so much, David
Your information is very helpful.
I was really very ill with what I later found out were kidney problems, probably kidney stones.
I was bloated and nauseous and had pain on my right side. I
didn’t feel like drinking much or eating at all.
I may not have eaten anythng in two days and probably drank very little. I’m never hungry or thirsty
So what you are saying makes a lot of sense!
Also, I tend to be shaking when I wake up (before breakfast)
I’m not looking for parallels or sympathy from other Ataxians, just answers, like you gave me.
My neurologist just gave me the answer that “Ataxia symptoms get worse when you’re ill” but that didn’t seen to cover it, especially as nobody else has this symptom.
It seems to me this has nothing to do with a shrunken cerebellum, but with another part of the brain, like the brain stem.
Anyway, I’m seeing my neurologist face-to-face tomorrow and I hope to get more answers.
Thank you once again for your very helpful reaction!
All the very best,
Manja Dolan
Someone replied to your post.
March 24 |
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Manja,
As I’ve noted in previous replies I’ve written, as much as we’d like to find parallels with fellow patients, we are all so unique in our metabolic, physical and brain chemistry.
This can be frustrating when such incidents you experienced occur.
For what it’s worth, my immediate thought was were you hydrated and had eaten recently? I’ve noticed that until I’ve had breakfast my brain and body doesn’t function that well until they receive sustenance.
Historically I’m a person who can easily forget to eat during the day and now become acutely aware when I need to eat.
Hopefully you fall into the same category and easily avoid future incidents,
Regards, David
I would like to make a suggestion. Drink at least 8 glasses of water a day even if you aren’t thirsty. Water is very important for the bodily functions.
Thank you. I know I should, and I try, but at the moment I manage 1 litre maximum. Still, that’s a lot better than I used to drink (not at all!)
Someone replied to your post.
| Chas521
March 25 |
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I would like to make a suggestion. Drink at least 8 glasses of water a day even if you aren’t thirsty. Water is very important for the bodily functions.
How do you know that you are drinking enough water. Your urine should be clear or light yellow!
Glad to be of help, as limited as it is.
Also, depending on your ataxia variety you might also know that the cerebellum connects to most parts of the brain and can impact more than just motor function.
Good luck with your neurologist appointment.
David Wood
I hope you are ok…how was your Neurology Appointment
Thank you, Beryl My neurologist appointment went well. My neurologist is very thorough. She works at a University Hospital in Amsterdam. She had an extensive TIA research done on me. The CT brain scan showed no deviations, other than those that were normal for someone my age (I’m 75) and some old scars. No clotted carotid arteries and no signs of a recent TIA. She has no physiological explanation for what happened. The only thing for me to do now is to try to prevent getting ill again. I drink as much as I can and test my urine daily. However, I do have the feeling my brain is deteriorating. I get slower and have more problems formulating a sentence when speaking. However, that has nothing to do with Ataxia.
It’s reassuring to know your Neurologist has been so thorough..
I do notice a ‘slowing down’ with thought processes myself …often searching for the precise word…and recall isn’t as ‘sharp’…age is likely partly a factor (I’m also 75)….but…..there is also something else to consider.
No matter what age a person is, or the type of ataxia diagnosed…Cognition, and Emotional responses can be affected by a diagnosis of ataxia.
This has been acknowledged for several years…and can affect people in various ways…