Head-shaking and dysphagia

[Jarca]

Hello,

does anybody with XALD suffer with constant head-shaking or dysphagia - difficulties with swalloving of food? My physicians disagree one with other if it is a symptom of AMN or other deseas...

Thank you for your answers.

[COwithAMN Administrator AMN EASIER Volunteer]

Jarca bio provided by Chris thanks to Google

My name is Jarča and I was diagnosed with ADL-AMN 3 years ago. Unfortunately, my daughter is diagnosed positively. Currently, I have already developed health problems, so I am interested in what medications others are taking.

I take Baclofen and Pregabalin. I used to take Gabapentil in the past, but over time it stopped working and the pain got worse and worse.

[monkeybus]

I have thought of posting about this several times in the past.

I have battled various ticks like head shaking, clenching my throat, wrinkling my nose, blinking, etc all my life. From around the age of 7, it started.

Soon as I stopped one, another would start up. The only way I can control them is by internalising, I did/do a lot of meditation. I generally do things like following my breath, but if I am tired, or if I haven't eaten for a long time the head shaking always kicks in.

I read a while back on an autism website that if you have three or more of these ticks, it is officially Tourette's Syndrome. I have qualified for that several times throughout my life.

I have experienced difficulty swallowing food as well, though that isn't nearly so usual, but I'll agree with you that it's likely one of the myriad symptoms of AMN. It is the disease that keeps on giving.

Compared with the spasticity/spasms/fatigue/constipation, the head shaking was easy to get under control. Though it didn't seem so at the time.

Be interesting to hear any other replies to this.

[Jarca in reply to monkeybus]

Thank you for your reply. For me the shaking is inconvenient, but the fact I am not able to eat is devastating… I’ll try some of the calming techniques you mentioned and hopefully I will get it under control too.

[TravisWharam]

It’s worse with stress and anxiety.

[monkeybus in reply to TravisWharam]

See, my legs get weaker when I am stressed. My head shaking kicks in with hunger mostly. This could well shape up to be a sizable thread.

[TravisWharam in reply to monkeybus]

Exactly, stress is the ultimate crippling with this disease. It’s when I feel the worst. One of the more painful locks when stress is high, is my jaws. They start to tremble and it gets painful.

[Jarca in reply to TravisWharam]

I didn’t see any relation to stress in my case thoug obviously I am stressed all the time… Hope, it is the cause

[quilling]

I have both. Head shaking constant I hold my head with my hand while sitting. I’ve had head shaking so violently back and forth my husband has had to get me to couch and prop pillows around me head. Trouble swallowing. Had surgery to stretch esophagus didn’t work. It was explained to me all nerves. I also have had hand tremors for years and speech. I’ve lost my voice completely in times of stress. Most recently for two days when I learned of a death in the family. I am a 63 year old ALD female

[TravisWharam in reply to quilling]

Have you had your cortisol checked?

[Jarca in reply to TravisWharam]

We’ve got our cortisol level check every year. So far it wasn’t a problem. Even my VLCFA levels weren’t that high compared to my daughter, who luckily doesn’t have any symptoms yet.

[Jarca in reply to quilling]

Thank you for sharing. My condolences.

[quilling]

They have not I think perhaps years ago but not recently

[Jarca]

Thanks everybody for sharing your experience. It is comforting for me knowing I am not alone. Has anybody of you tried to visit a psychotherapist or how did you get your symptoms under control?

[TravisWharam]

So, I don’t believe that you have to have any adrenal involvement to actually suffer the side effects of stress. I haven’t had to have any steroid replacement, yet when I’m stressed or anxious, my body tenses up and shakes. It is not a huge problem yet, it just makes me feel more tired when it all stops.

[Sue95]

My grandmother had constant head shaking from her 60s. My mother had a severe tremor of her hands. So far at 64 I have neither, but I think the symptoms are likely to be connected with the gene and nothing to do with stress. It is possible that the shaking happens to females more than males, so more research is needed.