Eating difficulties

[Rave4lover]

My husband has had FND for the last 4 years. For the last year he hasn't been able to eat anything other than soft foods or smoothies(I put protein powder in them). The reason behind this is that his head pulls to the left and his jaw pulls farther to the left so his teeth don't line up. He usually ends up biting his inner cheeks. Any ideas on how to help him?

[210272]

Is that due to dystonia? If so, has he had appropriate treatment for it or even been offered a treatment plan? Thank you for being here for him and for supporting his nutritional needs.

[Rave4lover in reply to 210272]

Yes he has been diagnosed with cervical/functional dystonia plus PSTD

[210272 in reply to Rave4lover]

I'm iffy about them labelling dystonia as 'functional' unless there are clear 'rule in' signs that demonstrate that it is. Sounds like he may not have a treatment plan that's working so I wonder if it's time for a second opinion?

Do you mean PTSD? If so, is it medically induced? I think a lot of people with vague psychiatric diagnoses get medically induced PTSD (aka 'a sane response to an insane situation') from all the gaslighting and the lack of effective treatment plans.

[Rave4lover in reply to 210272]

You are correct it is PTSD, proves I should check what I write before posting. Both neurologists gave him testing, the signals in his brain are messed up. For example he followed her hand with his eyes, she went to the left, his head/eyes went to the right. He did this consistently. I get to go in the room with him when he is being tested. His physiologist that he has been seeing for the last 6 months is the one who diagnosed him with PTSD. Dr L. has worked with people with PTSD for the last 15+ years.

[210272 in reply to Rave4lover]

It's easily done with acronym diagnoses I hope you can speak with Dr L about an effective nutritional treatment plan since that seems to be the pressing issue for you both. I see dystonia being mentioned in the European Rare Neurology conditions fairly frequently but I don't know what advances have been made in knowledge or effective treatment so hope Dr L will do some digging about that for you too

[GrEeNbEeNs]

Thanks for your reply it's very interesting my head turns to the left and I bite the inside of my cheek,I had to get a lump cut out of my cheek recently I thought I was biting my cheek because I might have needed new gnashers lol

[Lady4]

Following member 210272 comment below, I researched it. It does sounds like cervical dystonia:

The most common type of twisting associated with cervical dystonia is when your chin is pulled toward your shoulder. Some people experience a combination of abnormal head postures. A jerking motion of the head also may occur.

THERAPIES

Sensory tricks, such as touching the opposite side of your face or the back of your head, may cause spasms to stop temporarily. Different sensory tricks work for different people.

Heat packs and massage can help relax your neck and shoulder muscles. Exercises that improve neck strength and flexibility also may be helpful.

The signs and symptoms of cervical dystonia tend to worsen when you’re stressed, so learning stress management techniques also is important.

Cervical dystonia is also sometimes linked to head, neck or shoulder injuries.

Has he not had any tests/scans etc?

[Rave4lover in reply to Lady4]

3 years ago, he slipped on black ice and landed on his upper shoulders and neck, that same year his late wife was diagnosed with stage 5 breast cancer, and a tree fell on his house, it all happened basically during the same time frame. He had a MRI of his neck, it came back normal. He was put on botox shots to his neck. He has tried acupuncture both with and without TENS, it works to a point, physical therapies, massage, ketamine treatments(worthless) He is also doing hypnosis. Last year his botox doctor wanted him to get an MRI of his brain, that was in January, the results came back and she couldn't read them all she could say was that he didn't have Parkinson's. So I went hunting for a neurologist, found one in February, got an appointment in July. The July appointment was hopeful. She wanted him to see a movement specialist type neurologist, saw her the end of December, next appointment is in February with the same doctor. Then the two doctors will get together and decide who will take over his case, and go from there.

[Lady4]

Oh boy, it does sound like he has had a lot to deal with, sorry to hear that. I hope they can make a plan of action that can help him and give him a valid diagnosis.

[Shimmyaway]

You were asking what you might add to your husband's soups and smoothies, at which you must be a dab hand by now. With vegetable soups I add protein by blending in baked beans , or edame (soya) beans which you can buy frozen .... very convenient, and probably cheaper/less processed than protein powder. Raw eggs mixed in would be another option .. and you can't taste them! Happy cooking.

[Rave4lover in reply to Shimmyaway]

Thank you, for your suggestions. With his smoothies I get very creative.