My choking and coughing is getting worse. Any advise or suggestions are welcome. Thanks.
aturtle2,
Please read my post 'How to improve Slurring and choking' on page 2. This sure helped me with my choking.
I see this happening in my 7 year old daughter, too. Becoming rather problematic. We will be scheduling her for a swallow test. Will share when we find something.
Steve, I am not finding your page with suggestions…sorry, I am not very tech savvy…can you post a link?
For me, extra chewing, water or a liquid, concentration on what you’re eating - as much as possible, anyway, and an extreme amount of patience helps me…it takes me close to forever to eat.
Also, if it’s more of a social meal, ex: dinner party, I’ll eat something before-hand since I find it close to impossible to eat-swallow-talk and/or respond in a timely manner.
1 Like
Hi Mom of ataxic,
it is not very easy to arrive at the right link.
1 you take the words How to improve slurring and choking
2 copy and paste them into the searching field on the right upper corner. If this does not function, type the words again
3 the thread mentioned will be the second thread when you scroll down
4 In this thread which could be interesting for you as a whole, you go to page 2. There are up to now three pages, they are indicated on the end of the page. With a click you arrive at the second page of this thread and there you will find the posting of Steve.
Akita´
Dear Aturtle2, My speech therapist told me to drop my head (chin) down towards my chest when drinking liquids. Also, eat very slowly, take small bites, chew throughly and zip water in between swallowing, Something that I do that has helped me is, I chew two sticks of sugarless gum shortly after finishing a meal, particularly after the dinner meal, as for some reason, I sometimes start having a coughing fit then. I find keeping my throat wet with saliva (from chewing gum) helps me. ;o)
Thank you.
Thank you Rose. Will give this a try.
rose said:
Dear Aturtle2, My speech therapist told me to drop my head (chin) down towards my chest when drinking liquids. Also, eat very slowly, take small bites, chew throughly and zip water in between swallowing, Something that I do that has helped me is, I chew two sticks of sugarless gum shortly after finishing a meal, particularly after the dinner meal, as for some reason, I sometimes start having a coughing fit then. I find keeping my throat wet with saliva (from chewing gum) helps me. ;o)
Mom of ataxic,
When someone responds to a post it gets bump up to current posting. So the link you are looking for is 4 post down not including the 3 featured posts.
Mom of ataxic said:
I see this happening in my 7 year old daughter, too. Becoming rather problematic. We will be scheduling her for a swallow test. Will share when we find something.
Steve, I am not finding your page with suggestions....sorry, I am not very tech savvy.....can you post a link?
Sometimes it helps when i take something sweet like chocolate.
In my case it helped
- first: only for the symptoms: 2 to 3 tablets of Carbamezepine - Neurotop retard 300mg daily. I had to take them all otherwise the symptoms started to come back on the very day. As your daughter has got already a lot of medications, and carbamacepine has a lot of cross reactions with other meds, and some probable side effects, this would perhaps not be the optimal solution for your daughter, even if the med would work for her. Furthermore there are actuallly existing more and newer meds like carbamazepine (discuss with your doctor)
-second: releasing the symptoms, so that i could withdraw the carbamazepine: Atovaquone/'Wellvone. For the dosing of this meds there are different plans, which are adapted on the possible diagnosis your daughter could have got - besides her cerebellar ataxia. There exists the possibility of a liong term use for the prevention of pneumocystis pneumonia and for children/youth with ataxia telangiectasia, combination therapies especially with azithromycin for babesiosis, and other antiinfectives for the treatment of other protozoic diseases..
Probably your daughter has got a sort of immunodeficiency, primary immunodeficiency showing itself as a weakness in responding with effective defense against certain infective agents, might be bacterias, virusses, protozoae, fungi (like cryptococcus and candida). Has she done already an immune status? This is done normally in an immunological practice and includes also monitoring of antibodies against diseases which are occurring typically in childhood and in children with immunodeficiencies, as streptococcus pneumoniae, haemophilus influencae, measles, mumps etc.
From the type of the immunodeficiency it is possible to guess with some certainty if your daughter would have got an increased susceptabitlity for special infections.
Furthermore, if the state of your daughter has been deteriorating recently you should ask yourself about the trigger which has caused this. Maybe its evident. An then try to do everything what you know to actually improve the health state of your daughter.
There has been described, that in the spinocerebellar ataxias (and should also be the case in all heredodegenerative cerebellar ataxias - that there would exist a "window of reversibility", - a certain timespin during which an increased chance would exist for the symptoms becoming better again.
In my case and in the case of my mother, this reversibility has shown up for several times. (Not to 100% clear from what condition: these could be a SCA6 and/or one or two mutation in the ATM gene - - with degenerative cerebellar degenerations typically for them).
I can t help but this reminds me on such formerly unrecognized, silent protozoic infections which could occur mire often and under worse conditions with patients with such cerebellar degenerative diseases.
Treatment of this - protozoic - infections would then improve again the health status even in a person with a hereditary cerebellar ataxia. The term for that would not only be "reversiblity of symptoms" but instead "successful treatment / improvement of symptoms/ reduction of the viral/paraasitic load..
There is a recent "Consensus Paper" on pubmed.org which refers to this "window of reversibility" as a potential tool for a better treatment and managment of cerebellar ataxias.
or A-T Ataxia Telangiectasia thie reversibility of symptoms has been mentioned as a possible feature (not all symptoms, not for everybody.) already decades ego in teaching book, but since then this idea has seemingly disappeared from the literature - and now: this article...
Akita
------
From the Abstract:
"Unresolved questions include how the dysregulation of these pathways triggers the onset of symptoms and mediates disease progression since this understanding may allow effective treatments of SCAs within the window of reversibility to prevent early neuronal damage."
Cerebellum. 2013 Dec 5. [Epub ahead of print]
Consensus Paper: Pathological Mechanisms Underlying Neurodegeneration in Spinocerebellar Ataxias.
Matilla-Dueñas A, Ashizawa T, Brice A, Magri S, McFarland KN, Pandolfo M, Pulst SM, Riess O, Rubinsztein DC, Schmidt J, Schmidt T, Scoles DR, Stevanin G, Taroni F, Underwood BR, Sánchez I.
Abstract
Intensive scientific research devoted in the recent years to understand the molecular mechanisms or neurodegeneration in spinocerebellar ataxias (SCAs) are identifying new pathways and targets providing new insights and a better understanding of the molecular pathogenesis in these diseases. In this consensus manuscript, the authors discuss their current views on the identified molecular processes causing or modulating the neurodegenerative phenotype in spinocerebellar ataxias with the common opinion of translating the new knowledge acquired into candidate targets for therapy. The following topics are discussed: transcription dysregulation, protein aggregation, autophagy, ion channels, the role of mitochondria, RNA toxicity, modulators of neurodegeneration and current therapeutic approaches. Overall point of consensus includes the common vision of neurodegeneration in SCAs as a multifactorial, progressive and reversible process, at least in early stages. Specific points of consensus include the role of the dysregulation of protein folding, transcription, bioenergetics, calcium handling and eventual cell death with apoptotic features of neurons during SCA disease progression. Unresolved questions include how the dysregulation of these pathways triggers the onset of symptoms and mediates disease progression since this understanding may allow effective treatments of SCAs within the window of reversibility to prevent early neuronal damage. Common opinions also include the need for clinical detection of early neuronal dysfunction, for more basic research to decipher the early neurodegenerative process in SCAs in order to give rise to new concepts for treatment strategies and for the translation of the results to preclinical studies and, thereafter, in clinical practice.
- PMID:
- 24307138
- [PubMed - as supplied by publisher]
I've had a coughing problem for 20 years. My PCP treats me for postnasal drip, GERD, and allegies as possible causes. I take the meds fairly consistently but with no real change. When I begin a meal, I have a few minutes of coughing and everyone stares at me, waiting until I get over it. I erupt in sudden coughing for no reason, except maybe stress, or nerves. I have to have throat lozenges and water with me at all times as there is a constant tickle. It is embarrassing. I now think this is a symptom of Cerebellar Ataxia. No proof, Just a feeling.
Yes, I agree, Umigal! Coughing is a symptom of cerebellar ataxia, per my neurologist. I can start coughing on my own saliva! ;o)
Coughing seems to be connected with cerebellar ataxias in different possible ways.
I have just found a study report about some families with SCA6 where the cerebellar ataxia was preceded by attacs of spasmodic coughing for 10 years and longer. Such connections to special ataxias are perhaps underdiagnosed,the abstract of this report tells us.
Maybe different ataxia types are connected with different forms of coughing?
Akita
---
Arch Neurol. 2006 Apr;63(4):553-5.
Cerebellar ataxia with spasmodic cough: a new form of dominant ataxia.
Abstract
BACKGROUND:
Although mentioned in most series, "pure" autosomal dominant cerebellar ataxias, except spinocerebellar ataxia type 6, are difficult to differentiate on clinical grounds.
OBJECTIVE:
To describe Portuguese families with a peculiar pure form of dominant ataxia that, to our knowledge, has never been documented before and in which cerebellar signs are preceded by spasmodic cough.
PATIENTS:
Through a population-based survey of hereditary ataxias in Portugal, we identified 19 patients in 6 families with this particular disorder.
RESULTS:
The majority of patients had a pure late-onset ataxia with a benign evolution. In all of the families, attacks of spasmodic coughing preceded ataxia for 1 to 3 decades and were a reliable marker of the disease. In Portugal, this form of ataxia accounts for 2.7% of all of the dominant ataxias.
CONCLUSIONS:
The families that we describe shared some relevant clinical and imagiological features with spinocerebellar ataxia type 5 and the recently described spinocerebellar ataxia type 20, allelic to spinocerebellar ataxia type 5. Spinocerebellar ataxia types 5 and 20 could be different phenotypic expressions of the same molecular disorder. The association of a dominant ataxia with spasmodic cough is rare but probably underdiagnosed.
- PMID:
- 16606768
- [PubMed - indexed for MEDLINE]
Do you take a PPI Proton Pump Inhibitor against GERD? If yes, you could ask your doctor if a switch to another sort of med like Sucralfate would do better. I have been prescribed that against my reflux, after it had been assured that i would not have got a heliobacter pylori infection. When your reflux would be neutral this could help better (but its also against gastric ulcers etc..)
Which meds have been prescribed to you for postnasal drip and allergies?
In my experience it can help much drinking a lot of fluids, especially in the morning, to water my body (with warm water oder bronchial tea), so that the tickling in my bronchial region is not so likely to appear.
My GP has prescribed me a cream mixed with cortisone, ultra-sicc and ultra bas for my constant tickling which i have experienced especially one year ago, for applying on the skin of this region. I am using it also today, when this symptom appears, - and it helps a bit.
I am also using throat lozenges, but also have been drinking warm/hot herbals tea for the lungs in big quantities - thymian, breast - tea mixture from the pharmacy, marshmallow.
For my lungs i am taking inhalations with cortisone, but i am actually not sure if this is a good solution for me, because cortisone is reported to trigger to outbreak of an acute episode of the protozoic infection of babesiosis, - and i am getting such problems again and again. Hopefully a better treatment for my babesiosis would finally resolve this problem one day.
Best health for you!
Kind regards,
Akita
Umigal..........I to have had a cough for the past 17-20 years. I still have the cough but I think since 4months it has eased off really well. That was thanks to using allergy medication four weeks ago. I have been using Zyrtec. I feel this has helped a great deal. Along with taking my Gerd and allergy meds I am hoping this helps. Use the Zyrtec D if you try this. The D on zyrtek will dry the post nasal drip. I hope this info gives you some help.
I've had a coughing problem for 20 years. My PCP treats me for postnasal drip, GERD, and allegies as possible causes. I take the meds fairly consistently but with no real change. When I begin a meal, I have a few minutes of coughing and everyone stares at me, waiting until I get over it. I erupt in sudden coughing for no reason, except maybe stress, or nerves. I have to have throat lozenges and water with me at all times as there is a constant tickle. It is embarrassing. I now think this is a symptom of Cerebellar Ataxia. No proof, Just a feeling.
In the UK a Speech Therapist would give advice relating to this problem.
Sometimes a ‘thickener’ is added to liquids. xB
Beryl,
Please see my post on page 3 or 4 How I improved my slurring and choking. If you have kidney problems a doctor should be involved.
I experienced a choking cough starting at the beginning of my food. Scary, as it is a combination of shallow breathing and NOT PAYING ENOUGH ATTENTION, new on me, but found out, grains of rice, grain of coffee, chocolate send me into a frightening state…I know it must be my ataxia, and my hubby is great, calm only catching my breath and literally noises I make scary. Any good advice? Do you think a speech therapy can help, as speech horrendously slurred…and some corrective muscle exercises, if exit???
Yes the coughing and/or choking is part of the Ataxia for me. I cough/choke on my own saliva. Went to a speech therapist they did a swallowing test. And she works with Ataxia patients for speech. I have EA2 so my speech is episodic. The therapist told me she had a pretty good success rate helping Ataxia patience with their speech.