Newly Diagnosed with Vestibular Migraine and Scared

Hi, I’m a new participant to this forum and really need some support and feedback. I have been provisionally diagnosed with vestibular migraine. In May this year, I began feeling faint and started experiencing feeling slightly off balance for a couple months, like I was being pulled to the side but I never lost my balance. In July, I had a pulsing/throbbing headache on one side of the back of my head. A few days later, I began feeling like I was tilting and swaying/rocking. I have ringing in my ears daily off and on throughout day and at night. I continue to have daily constant equilibrium/ vertigo problems of swaying/rocking or bouncing feelings that vary in intensity, I feel like I’m bouncing, swaying, or rocking whether I’m sitting, standing, walking, or laying down and this makes my eyes feel like they are bouncing. At times, I feel like I’m being pulled to one side, like tilting, especially when walking. When crouching, it makes my equilibrium worse and feels like the ground is also swaying or bouncy around me. At night when laying down, I turn my head and I feel like my head and eyes swivel in the direction I turn. When standing up/walking and I turn, I feel like I do half spins. I have head soreness and tenderness, especially on the left side of the back of my head which is the side of my head where the throbbing/pulsing headache occurred in July this year. I feel lightheaded most days and I am afraid I’ll pass out.

My gynecologist believes that my hormones are causing these symptoms because I am perimenopausal and wants to put me on HRT but I have also been prescribed nortriptyline for VM (did not agree with me so I stopped taking it) by my neurologist. My CT scan and MRI were all normal and my ENT has ruled out an inner ear problem.

I am freaking out and highly anxious about my present state and have very little family support. Since my vertigo is not causing me to fall over and is not always obvious other than me being a little clumsy, my family thinks I’m not really experiencing all these symptoms which makes me feel more anxious. Does this sound like VM or could it be hormonal from perimenopause? (because my problems started after a horrible night sweat from perimenopause). How can I cope with my anxiety and lack of support at home? I feel overwhelmed and depressed and all I do is cry.

Any thoughts you can provide would be greatly appreciated. Thank you and I look forward to hearing from you.

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Hello from a fellow new participant.

I’m so sorry you’re going through this. It can be so scary and overwhelming, especially when it’s constant.

Unfortunately I don’t have any great advice on your diagnosis or what you should do medically.

But I just wanted you to know that I, and the people on this forum, believe you and understand what you’re going through. And just because you aren’t falling down or stumbling doesn’t mean your symptoms aren’t awful. I have never once fallen from my dizziness symptoms and appear normal to others. But what you’re experiencing is real and scary, and don’t let anyone make you feel otherwise.

You will get through this. Your symptoms will improve and you’ll get better at coping with them. Wishing you better days very soon.

Thank you, I’m trying to take each day one at a time but my anxiety is so strong right now. It’s good to know I can reach out to others and we can be here for each other🙂 I’m always open to suggestions.

I’m not a medical professional but I think it’s possible that it could be both your hormones and vestibular migraines. The menopause can affect or trigger vm so that could be what you’re experiencing. One of the symptoms of vm is anxiety, I found it incredibly difficult to deal with but medication has made a huge difference for me and helped immensely. It may take a while to find something that works for you (bear in mind that it can take a solid three months on a med before you start to see benefits so don’t give up) but don’t give up speaking to your Neuro and trying different things. If it’s vm I don’t think hrt alone will fix it but it could certainly help. Hang in there and I hope you can find some relief soon.

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Thanks for the response. I’m going to talk to my neurologist about other medications because nortriptyline did not sit well with me. I’m trying to stay relaxed and think I’m gonna start HRT soon.