As I mentioned in my introduction, I have yet to be diagnosed with anything but as of late I’ve been really struggling with dizziness and unsteadiness triggered by head/neck movement. The symptoms are 24/7 and I’ve been dealing with them going on nearly a year now. It’s hard to even enjoy or relax due to this. And due to my current financial situation I’m unable to see a medical professional until next year. I can use some advice.
Try low dose Amitriptyline as a vestibular suppressant. 10-30mg nocte. A primary care doctor should be able to prescribe that. Made a huge difference to my life.
That said, it really would be better to visit a specialist and get a full diagnosis.
Are you familiar with the book “Victory over Vestibular migraine” by Shin Beh?. Reading it helped me a lot to understand my condition. There is a discussion about the book on this forum, it might give you an idea whether you’d like to get the book or not
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Thanks for replying. I’ll definitely check out the discussion about the book. I suspect it’s more to do with my neck or upper cervical than migraine though migraines do run in my family. It also doesn’t help that I’ve been dealing with undiagnosed mental health issues for over a decade
Try to get hold of a copy and read the book. It will give you best idea of what you are dealing with. About 50% of people start off thinking it is their neck causing the problems. I read only the other day even chiropractors adverts say only about one in five actually have neck as a ‘cause. And they are saying that in adverts for their services. VM affects the neck and the resultant tightness increases the dizziness and that applies to any vestibular issue and also muscular tension from nervous conditions too. Tightness sends incorrect signals about balance to the brain hence imbalance. VM tends to be multi factorial. A vague familial link to migraine is a strong indication and btw head motion sensitivity is another. The latter is even a listed diagnostic symptom.
Here is what Dr Beh writes about neck issues "Musculoskeletal neck and shoulder pain are common in vestibular migraine. The most common cause is the abnormally stiff head and neck posture adopted to avoid head motion-induced dizziness. Physical inactivity can also lead to deconditioning of the muscles that support the neck and shoulders, leading to pain (page 58-59).
Your neck pain will get better when your migraine issues are under control.
What the both of you said makes sense with regards to the muscle tension. Now that I think about it, before the dizziness became an issue, I did notice how tense my body was even in a relaxed state. And as you can imagine when I had panic attacks, my body went into “let’s make it seem like you’re having a heart attack” mode. So far I haven’t had much pain or stiffness in the neck just the annoying symptoms triggered by movement. Although I wish I can make my head stay still so I won’t feel bad.
This symptom I had a lot early on and still now when I have an attack. Even the slightest movement makes you feel dizzy. I’m more inclined to think it’s not neck muscles but eyes, ears and brain not matching. I really hope you can get it under control x
Please Please Read this thread. I’m trying to stop others suffering as I did.
The worst thing you can do is try to keep your head still.
And for your own sake get a proper diagnosis and read Dr Beh’s book if able. Learn about the possibilities to better manage your own condition and continue coming here for extra support,
I’ve been moving my head as I regularly do. I’ve even been taking short walks though I hardly enjoy it due to the symptoms. Not sure if it’s a great idea to purposely trigger the dizziness so I can get desensitized.
If you do have active acute VM I don’t think any amount of head turning on purpose is going to desensitise you. From my own experience I certainly wouldn’t recommend it. It’s more than probable it would just make you worse.
So far I’ve been moving my head as I normally would when I go for my short walks for a couple of hours or while moving about in my house. I was just wondering cause I see VRT exercises on YouTube for MAV/VM. I’ve never done them. Plus I would like to try to go out more cause I’m fed up with being in my house.
Until you have a diagnosis or even a Probable diagnosis I wouldn’t suggest you attempt such things. There are lots of topics on here relating to VR’T. Please check them out. General VRT exercises are much like trying somebody else’s prescription medications. A No Go area. They need to be tailor made to individual requirements.
Good point. I was really hoping to go out this weekend just to get out of the house. I’ve been cooped up for too long and my depression and anxiety have been eating at me.
Great explanation Helen! Makes a lot of sense. I am way more vigilant about neck issues now and try and address them as soon as I feel a problem there for fear of things escalating in the way you describe. Neck massages by a good professional are worth it for a severe spasm. And the internet gives lots of advice about neck stretches.
I’m confused with being chronic and having baseline dizziness that wax and wanes but not having attacks. I’m trying to live and move as normal but the chronic dizziness isn’t going away so what would help in that case
I’m having the same problem as well. My symptoms don’t come in attacks they’re constant. I do notice that if I strain my neck, I get more dizzy so I have to make sure to only move my neck/head naturally and not make any jolts, or turn it in weird angles. I did try neck stretches earlier and doing them made me realize just how tense my neck is. I’m also being more mindful of my posture when using my tablet and sleeping.
I was prescribed a low dose Amitriptyline for nerve pain in my back. It certainly worked on the nerve pain but a side effect for me was it brought on restless leg syndrome (which I have previously treated with a good high dose of magnesium at bedtime). So not for me I’m afraid
Yeah, I had that for a little while, but that side-effect subsided completely after a little while of use. The benefits definitely outweighed the downsides for me!
I’m glad it worked for you, unfortunately it’s a side effect I find too distressing.