New to this forum so still reading though all the topics.
I have been ill since Sept 2023 after returning from holiday in Spain.
About a week after returning I started feeling unbalanced and a swaying feeling when out walking.
I have felt where my head feels like it’s moving in the room rather than the room spinning. As soon as I wake up I have chronic headache all day and feeling like my head is constantly moving dizziness.
I have had an MRI, two balance tests (also checked BPPV) and blood tests all returned fine. Eye tests all returned fine.
Every day is torture, I am currently on Amitriptyline for headaches as my consultant thinks it could be vestibular migraine only 10mg and 6 week waiting list for an appt with GP to up this as it’s not doing anything.
I have been doing the Cooksey Cawthorne exercises but they don’t help.
Can anyone relate and any positive steps I could try? I am seeing my consultant again in two weeks and I plan to ask to see a neurosurgeon on priority.
Any help would be appreciated as every day seems a long battle with this.
Welcome to the forum, @Scotty! Everyone here is super friendly and eager to help you out on your journey. If you haven’t yet, I highly recommend checking out the Welcome Topichere and the Posting Guidelineshere.
You’re not alone in this battle, and there are many who can relate to your experiences. Hang in there, and feel free to share more about your journey!
Welcome Scotty. Typically, exercises that help one person may be of help to another, or they could be of no use. I finished a set of physical rehabilitation for my back recently, and the exercises that helped stabilize and strengthen my back and legs also seemed to help improve my vestibular issues.
That being said, my vestibular issues may be different from yours, and therefore the exercises might not only be of no use, they could aggravate your condition.
My recommendation is to find a good physiotherapist and have them evaluate you and recommend exercises.
Even if you don’t find help here, we still would like to hear from you. The more we know about you, the better the chance that someone will be able to offer some suggestions.
Good luck, I do believe activity is not only important, I believe that it is the key. I’m not advocating going crazy, I’m just saying an hour a day of moderate activity can be hugely helpful.
Scotty - So sorry you’re having such a tough time. Like you, my symptoms first spun out of control on an overseas trip. As you read through some our experiences with VM, you’ll see that you’re not alone.
One thing that struck me about your post was that you are seeking help from a neurosurgeon. Typically those of us with VM find best results with neurotologists or neurologists who specialize in headaches. And there are some ENT’s who treat VM but they’re rather rare in my experience.
In any case I suggest you look for someone who regularly treats people with vestibular disorders. You might ask for names on this board. A great resource is VEDA. They have a a lot of information on their website as well as a list of recommended medical practitioners. Another good resource for information is Dr. Timothy Hain’s website.. Don’t be put off by the website’s basic layout – it’s the real deal.
Look everything over and come back here anytime. We’ve all been through it and many of us are still in the throes of it so you’ll always be welcomed. Take care.
Hello Scotty,
I am sorry you are going through this. It is no fun. I have been fortunate to work with Dr Hain for a number of years, as well as an experienced vestibular physical therapist. As others have mentioned, I would also recommend seeing a otoneurologist and a PT experienced in vestibular therapy. But I can give you hope. It took a while, but I am much better now.
Claudia
I think the frustration is I’m 18 months down the line and it seems to be getting worse rather than better and I still haven’t been given an actual diagnosis. I am being treated for VM but I’m not convinced it is that, I just think that contributes to the dizziness rather than the cause.
It’s just a tough road, I am 33 and feel like I cannot live like this for the rest of my life it’s just not possible. Every day is a huge struggle when you feel dizzy consistently.
My case is different and not as constant as yours. I seemed to have a massive attack every six weeks that lasts for a day and is relieved only by sleeping. Since I read the book “Heal Your Headache” and started avoiding the common migraine triggers in my diet, I haven’t had an attack and it’s been almost 3 months. I’m hopeful this will last. If you haven’t already, you may want to read that book. Best of luck to you dealing with such frustrating symptoms so young.
Everyone here is super friendly and eager to help you out on your journey. If you haven’t yet, I highly recommend checking out the Welcome Topic 
