Neck Spasms.: Hi everyone! Happy 😊 new... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Neck Spasms.

LEEJUNFAN profile image
LEEJUNFAN
•8 Replies

Hi everyone!

Happy 😊 new year to you all.

Does anyone have spasms in their neck and locking - a sort of tightness?

My wife had an episode last week but today was a bit more severe.

It makes her head shoot upwards like a jerking effect and can make her breathing tight which is scary to watch.

I try to massage her neck whilst this happens and she also gets a right eye spasm too.

We see the Neurologist in February, albeit a different one.

Any tips from anyone who unfortunately suffers from them.

Thank you 😊 all.

Best Wishes!

Tony & Kim

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LEEJUNFAN
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Ailsaw profile image
Ailsaw

Hi tony and Kim , I have neck tightness and a kind of tremor thing that feels horrible like someone squeezing my throat, massaging the area sometimes helps. It is very unpleasant big hugs to Kim hope the neurologist can help x

LEEJUNFAN profile image
LEEJUNFAN in reply to Ailsaw

Hi there!

Many thanks for your reply and it is as you mention, very unpleasant to experience.

It shall be interesting to see what the new Neurologist says.

Wishing you all the very best for a happy & healthy 2017.

Kindest regards.

Tony & Kim xx

Tony and Kim.

Concerned to hear about neck and eye spasm symptoms. My FND partially consists of a complex movement disorder which simply means that I have multiple distinct types of abnormal movements which occur simultaneous. One of those is dystonia which manifests in my neck as sudden violent movements of the head and neck downward towards the torso and frighteningly for me towards table tops and counters. I have been told this is one form of torticollis. The movement of the head backwards as Kim experiences may be another form. Maybe an inquiry with the new neurologist may shed some light on whether Kim has a form of dystonia. The occasions when my head has jerked backward, I have also experienced breathing function disruption so I would encourage you to disclose this fact to the doctor as well.

The eye spasms are a super irritating distraction for me as well. Mine also occur on the right side and link to pulling of facial muscles around the mouth, chin and cheek. I have no formal diagnosis on this yet but from my reading can be associated with many medical conditions.

I am prescribed a number of medications which require moderate doses for me to loosely contain my movement disorder symptoms. These meds work to a point but frequently get overrun when symptoms become full blown. I would be hopeful that your new neurologist might discuss meds available to give at least partial relief for such symptoms.

I continue to seek comments from this site from anyone with movement disorder symptoms and whether they have found medication combinations that provide relief.

My prayers to you both. There are people out there working on these problems but they seem very complex and require endless patience to get to solutions.

My best to you both.

Dan

LEEJUNFAN profile image
LEEJUNFAN in reply to

Hi Dan!

Many thanks for your kind reply and your information as regarding your own issues.

We both hope that things will get better for you because the symptoms are very unpleasant and debilitating.

Kim's Neurologist ruled out Dystonia 3 years ago when she was first diagnosed with FND but she didn't have the neck episodes then.

They don't happen often thank God but that isn't to say it lessens the stress.

Our heart goes out to you because you obviously have severe episodes and you must be a very strong individual to be able to cope with them.

I will note down what you've mentioned and explain this to the Neurologist next month.

Thank you so much and all our sincere wishes to you.

Tony & Kim

in reply to LEEJUNFAN

Tony and Kim.

You are so thoughtful to reply. Many thanks for additional information. I have experienced symptoms for 22 years. The great mystery for me has been the ever evolving nature of symptoms and the complexity thereof. My dystonia was coincident with blepharospasm and ballismus type episodes and originated within this decade as opposed to occurring at onset. Interestingly, my youngest daughter who is also diagnosed FND has symptoms more closely related to what you and Kim describe as part of her movement disorder. It is a very strange disorder to say the least. I did find a flexible neck brace helpful during severe onset but this must be done only in conjunction with strict medical orders as I had to protect against cervical spine injury.

Please keep updating as you go through this journey. For many of us, the experiences of others is our best guide.

My continued good wishes for diagnosis, treatment and full recovery to a healthy happy lifetime.

Dan

TaZMommy profile image
TaZMommy in reply to LEEJUNFAN

Hi Tony & Kim,

I am so so sorry you are going thru this but please don't give up I fought for 3 years now to get answers and as well was also diagnosed several years ago with FNB I had a lot of the same similar symptoms.

I went to 4 different neurologist the last one over a year ago & he found I had dystonia as well as beginning stages of Tourette's & Parkinsons.

Since then I have started seeing a reumotologist (sorry not sure how to spell that) & it has only been in the last 6 mos, I have been fighting this for 3 years on Dec 5th 2016 that I have come to find out that it is now full blown Tourette's & also added acute fibromyalgia. He stated that Adderall for ADD/ADHD has helped with Tourette's , Dystonia & FNB patients as well. I started it then & i'd say within a week to week & half after starting it my symptoms have cut down tremendously. I still when get really nervous, upset, sad etc. it well flare up. 2 weeks ago yesterday my Mother was living with me at the time came home from hospital on hospice & passed away in my spare bedroom (her room) here at my house my symptoms came back ten fold I'm hoping because it was so traumatic to me that these will as well go back down again soon. But I am still having to take a low dose of pain meds 5/325 3-4 times a day due to the fibromyalgia but I do not feel so shame around my 13 year old twin Granddaughters or their friends (only scared their friends would pick on them due to my shaking uncontrollably, head, face, mouth & neck then down to my arms then legs twitching & my speech was that of a stoke patient) any longer & my speech has improved tremendously while being on the Adderall.

This site has helped me so very much & I hope it will help ya'll as well. But please don't give up please keep pushing for all the answers I promise they are out there.

Best of luck to y'all

Katie

AliRT profile image
AliRT

I get spasms in my neck and my upper body gently. I had a few injections of Botox in my neck and in the back of one of my legs for tremor. These didn't work for me as I started on a low-dose and my physiotherapist felt that a higher dose would hinder my muscle strength but they are an option so many people. I take five diazepam when the spasms are very bad and it does not stop them but it does stop them being so painful or violent. I know it is not always practical but mine are far improved when my head And upperbody are supported. I hope this helps and that you find a solution soon XX

Lornalou profile image
Lornalou

Hi I also have mild neck spasms from Time to time and also migraines with it I was only recently diagnosed and have finally started to get referral dates it's a long process mine is movement based and muscle weakness alongside extreme fatigue

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