Question being passed on from
http://forum.livingwithataxia.org/profile/rose386
I was wondering if anyone has trouble with "coughing" that has ataxia. I cough quite frequently, sometimes when eating or drinking liquids or for no reason at all. I was diagnosed 8 years ago with sporadic cerebellar ataxia and my coughing fits started about a year ago. Does anyone have any suggestions that may help?
Thank You
Rose
Yes I often get coughing fits - sometimes for no reason at all and often when on the phone.
I was told to keep chin down and sip water.
Patsy
that's high dose of COQ10 - mine are 30mg. Neuro says that unless you have deficiency, shouldnt need more.
She is checking my muscle biopsy to see if I have a deficiency.
I agree, nothing to lose :)
Patsy
Um.... It seemed like even if one diagnosed with CA, he/she can learn how to live with it?
I misunderstood that any one of the symptoms could kill me,
that makes me feel frustrated, helpless, lost and fear.
Michael, I have read your sharing in other threads,
your attitude and sharing has inspired me with light and hope....
Thanks so much.
Charmaine
Michael Ward said:
Since I was 30 I would cough for no apparent reason?
This was the start of Ataxia.
At 45 it started effecting other parts of me.
At 53 I have Ataxia at a higher degree.
Back to coughing:
For years I heard specialist say it might be this or it might be that?
They were guessing constantly!
TEST for Asthma, Allergies, Stomach Acid, Acid Reflex?
In Nov 2010 when I was properly diagnosed with Ataxia (Possible SCA?)
It all comes clear as to why I would cough for no apparent reason?
Eating bread impossible without coughing.
Talking on the phone and suddenly have a cough fit?
Random Cough fits?
After Coffee Cough Attacks!
Sometimes I would lose my breath completely as if I was choking?
The cerebellum controls the nerves for swallowing. (Mine is Compromised.)
So in my vain attempt to control this aggravating condition i DO THE FOLLOWING:
1. Drink Water
2. Keep my nose clear (Kleenex Boxes in every room).
3. Gluten Free (This has reduced my coughing and improved my speech).
"Some see no benefit, however we are all different. I just know what works for me."
4. Sleep helps. A Good sleep cycle can help however I suffer from extreme insomnia.
[I quit taking meds due to the side effects.]
5. Eat slow and at health food and stay away from fast food and processed food.
6. COQ10 Bioavalible source at 100mg with your meals so 300mg per day spread out works best for me.
6. PROBIOTICS keep your digestion system healthy. Your feel better anyway!
This 6 points have reduced my attacks by 80%. I don't know which one does the most good however I feel these thing are better than doing nothing.
What do I have to lose?
I certainly agree - when I see people my age jogging or just fast walking, I think to myself, I should be like that.
I have always been in tune with my body, particularly since I turned 40 [I was widowed then] and have eaten healthily and exercised sensibly. All has been with enjoyment and shared with others.
I like to think that this has kept the ataxia back and it didnt reveal it's ugly head until I was incapacitated with surgery on my foot.
Sharing is the key word. Thanks,
Patsy x
See a Speech therapist to assist with swallowing problems, they are magic on this stuff and can teach you how to improve on what you have. They can also do a swallowing test that shows flow of liquid down your throat.
Thank you! I will definitely do that! It's pretty scary when you cannot even swallow your own saliva at times!
Eric said:
See a Speech therapist to assist with swallowing problems, they are magic on this stuff and can teach you how to improve on what you have. They can also do a swallowing test that shows flow of liquid down your throat.
Hi Amanda,
A quick tip from the therapist, "When you eat don't speak, swallowing everything first!"
I too cough when talking on the phone. When I eat things like bread or food that I have put salt on, it seems to shoot down my throat the wrong way causing coughing speels. I have to concentrate on eating, eat slowly and don't talk, if I lose concentration or start talking I start coughing which is embarrasing if eating out with friends. My father who also had Ataxia (now passed away) did the same but he often ended up in hospital as he couldn't get his breath and started realy choking.
Squash can make me choke especially citrus fruit ones - blackcurrant is my favourite.
Nurse told me, if you feel a 'choke' coming on, keep your chin down. I have found this very useful.
Patsy
coincidentally I have just spent an afternoon with the speech therapist who also looks after swallowing as well. I to was diagnosed about 8 years ago with CA of know known cause. My coughing has gotten worse since Christmas and my husband kept nagging me to go to the doctor. There was nothing on my chest and he referred me to the therapist. Turns out that my swallowing is worse and the coughing helps to keep food going down my windpipe. I have trouble especially with liquids and dry foods, but with a slight change in diet I am assured it will improve. She is going to order a fluoroscopy (something like that) its a xray video of my swallowing. It should give us a better idea of what's happening.
When eating, drinking, somnetimes just sitting, I choke on my own saliva. Some things i've learned:
I have SCA2 and I cough to the point of choking at least once a month! Speech therapy has taught my some tongue exercises that seem to help!
Hi Everyone on this thread
I want to hug you all. Saying how brave you are just isn't enough. Its certainly true but these arent the right words are they? Saying 'battle on' or 'keep your spirits up' doesnt go half the way either. But often that's all people can say, even friends! Everyone on LWA, esp. Patsy, cares. Don't forget that!
love and light
Sarah-Jane
I appreciate the advice. I already take 300 mg of COQ10 daily as my cardiologist suggested this amount. Apparently it off-sets the statin (drug) I take for high-cholesterol as the statin was causing achy muscles. I no longer have achy muscles and I feel it helps my ataxia too. I'm going to try some of the other tips as maybe they'll help. Thanks again...
I have been buying co q10 but I have now requested neurologist [by email] to instruct my GP to prescribe for me.
Amazingly GP and her Pharmacist had no idea what it is and telephoned neurologist to enquire.
The prescription was sent to pharmacy at our local store where I am registered and they have had to order them in and wont be ready for collection until next week!!!!
This is only for 30mg daily.
Patsy Ipswich/UK
chocolate milk! what a good idea, anything with chocolate in makes me feel better!
Me too - love chocolate icecream. :)
Hi, My son has FA, he coughs too, quite often for no reason but he'll cough when he starts to eat a meal, The first taste can set him off and then it usually settles down. The worst thing is he cough's so fiercely his legs jolt up and anything on his lap ends up on the floor! He also takes Co ez 10 2x 30mg a day. I will tell him about keeping his chin down if a cough starts to come on though, I've always thought head up would be best to keep the windpipe and throat open. He also drinks loads of chocolate milkshake!
Yes 'keeping chin down' surprised me too - natural reaction is head up and gasp for air. However I'm told chin down opens the airways.
Patsy