Head and Neck Tremor (External and Internal) with Dystonia

[Yrrek]

My initial symptoms started with balance issues. The way I would describe it is, say you were in a canoe for a long period of time and then you get on to land. It’s that feeling that you cannot sense the ground you are walking on. The technical term used by my doctor is, proprioception imbalance. This was after they ruled out vertigo, heart issues, blood pressure, stroke, MS (MRI, monitors, CT scans, nerve conduction and a thorough neurologist exam). My first symptoms started almost 2 years ago for me. I’m 47 years old now.

Shortly after my first symptom of proprioception issues (2 months aprox) I developed a head/tremor. I say head/neck as I cannot tell you exactly were the tremor is coming from. The tremor is my biggest concern now, as I think I’ve become used to and have adjusted to my balance issues.

My tremor is mostly Internal and is felt more when lying down or when waking up from sleeping. My External tremor appears when I’m stressed or anxious. My neck and upper thoracic area is very stiff. I do have the occasional quick spasms in my neck, abdominal area and jaw....again mostly when I’m lying down. I call them spasms but there is no pain associated with it, just like when you are falling asleep and you have quick whole body jolts. My jolts/spasms are felt in more confined areas of my body.

I was diagnosed with mild dystonia by my neurologist in Oct of 2019. I have accepted that diagnosis, however I don’t relate to the head/neck twisting as seen in typical dystonia patients. My main symptom is constant internal tremor and stiffness in neck and upper thoracic area.

Just wondering if anyone else had similar issues and if so, have they developed on to more sever form of dystonia?

My neurologist recommended that I do not have Botox at this point in time as my case is so mild, however this constant internal tremor is always in the background of my life and is getting to be very annoying and occupies my mind on a daily basis.

I have been prescribed an anti anxiety med however I feel it doesn’t do anything for the tremor and I don’t like taking medication as I feel it will only mask one problem and I’ll be faced with another from the medication side effects.

Just wondering if anyone can relate to my dystonia symptoms and if so, have your symptoms progressed.

Thank you for your time

[jhop]

I have very similar symptoms but paired with excruciating nerve pain since it’s affected so much internal nerves of neck oral face jaw

[Yrrek in reply to jhop]

Thank you for your reply!

I have noticed just recently that upon chewing I had pain on left jaw joint for a couple of days then it disappeared and then had jaw joint pain on right side for just one day and it disappeared. Just when chewing food.

Could I ask you how quickly have your symptoms progressed?

[jhop in reply to Yrrek]

Over course of about 3 years - mine was diagnosed as functional dysphonia but cervical often affects jaw. there is a natural rehabilitation program out of New Mexico run by Abigail brown the spasmodic torticollos recovery clinic it may be a good long distance program you could do to balance and strengthen neck and prevent any further law issues I am having trouble with it but it’s proven very helpful to many - u can find it online

[jhop in reply to jhop]

She offers it as a long distance course

[Yrrek in reply to jhop]

Thank you so much for your information, much appreciated!

It’s nice to be able to related to others going through similar situations. I wish you all the best!

Thank you again!

[jhop in reply to Yrrek]

Would like to hear how it goes please feel free to stay in touch all my best

[Yrrek in reply to jhop]

Ok, thank you! 😊 I will let you know...take care

[Toto88 in reply to jhop]

So the gabapentin what does are you on plz ? & has it really helped the burning neuralgia ! They have asked me to try pregablin but the box is still sitting here untouched - just frightened really by meds’ altogether now because that’s what caused my Dystonia in the first place ! I’ve taken clonazepam- 2 x 0.5mg a day but it only takes the edge of things & it’s a Benzo so over time it will lose its effect & I will have to take more ! Have you considered cannabis oil?

[jhop in reply to Toto88]

I just do 200 in morning

200 at night and fight through the pain rest of day as it does still make me tired although they say it knocks u out for first week and then if u take very small amounts and taper up within a week or two you are not so tired asbody adjusts

I am so anti Med but the pain is so bad I had to

I have not tried Botox

[jhop in reply to jhop]

Thca oil is supposed to help with nerve pain and isn’t psycho active but I get a lot of anxiety from taking cannabis so had to stop

[rideabike]

Reading your post almost described my symptoms. It started with a mild head tremor (about 7 years ago) that progressed to internal tremor, severe neck pain and worsening head tremor and when I lie down or get up in the morning it can be felt for quite awhile until I get going or almost fall asleep. At first I was diagnosed with Essential Tremor but I didn't buy it because having it while lying down is not an ET symptom. I also have a stiff head, face and neck. I have been on levodopa for over a year and it helps the head and neck stiffness and slows the tremor. I take mucuna pruriens which is a natural form of it and the dose is about equal to the 100mg. of the pharma product Sinemet.

As you say stress or fatigue can make it worse. I was diagnosed in 2018 with dystonia but no one mentioned it to me so I didn't know until I read the neuro report and found out.

I sometimes get left leg dystonia that makes it stiff and my ankle turns inward. At night it can be quite painful until I get up and walk on it. I have swallowing problems and gastroparesis and I think this dystonia is secondary to something else and was brought on by anaesthesia after 3 surgeries that were close together.

I am waiting to be referred to a specialist. If it's all dystonia it is generalized and that can affect the swallowing and other stiffness in the middle of the body and even affect breathing which I also am experiencing. I'm 68 so at your age I wouldn't think it would affect you to that extent. I was told I don't have Parkinson's but now I'm wondering if it could be atypical Parkinson's since many of my symptoms seem unusual and I have definite cognitive changes as well as apathy and terrible anxiety at times that I fight hard to overcome. I'm winning but it's a daily battle. I hope your symptoms don't worsen. Take care and thank you for posting as I felt like the tremors were being ignored by my doctors and I didn't know why. I guess they just haven't figured it out.

[Yrrek in reply to rideabike]

Thank you for your reply.

It's very interesting that you mentioned gastroparesis. (I googled gastroparesis because I didn't know what is was). I noticed that I had a lot more acid reflux since I started having tremors. I wonder, strange as it may sound, if my acid reflux is somehow contriuting to my tremors. Another symptom that I had, (3 months after my tremors started) was I developed hives (urticaria)..which is still an ongoing problem for me.

Like you, I was also told I don't have Parkinson's but I feel I share many of the symptoms of someone with Parkinson's..... I'm grateful that the doctors say I don't have it though.

I have been reading about the two types of corrective surgery for tremors, thalamotomy and deep brain stimulation. Just researching incase my symptoms become intolerable. Thank you for sharing what you take as far as medication. I will look into mucuna pruriens as I have never heard of them before. You mentioned that this medication has helped you and because internal/external tremor, neck and upper thoracic area are my main complaints I will definitely do some research on the product.

Thank you for sharing your insights and what has worked for you. It's comforting to know of others going through similar health issues, as tremors are such an odd thing to try to explain to someone, especially if they are internal. At this point, zapping the overactive neurones in my brain to stop the tremors sounds like a great idea to me!! Getting rid of these issues would be amazing, but I would really like know what caused them to begin in the first place! Have a great night and I wish you all the best!