Has anyone had this before? I got diagnosed over a year ago now and on regular medication for my vestibular migraine, but recently my symptoms have been changing and I don’t feel like there’s any light at the end of the tunnel (without being dramatic) . I fainted back in the summer, whacked my head, bruised eyes, the works. Not sure if it had anything to do with my diagnosis but I obviously came over very dizzy before I fainted. Recently though, the dizziness is making me feel sick. I’m sitting writing this now and I feel dreadful. The pain is there nearly daily but is usually semi bearable. But with the more extreme dizziness, has come a feeling of being disconnected from everything. Sometimes things don’t seem real, or I have to almost have a double take as I think I’ve seen something different to what’s there. Also, driving at night is a huge no no now and I noticed today that driving in daylight was a lot harder than it’s been before. I’m scared it’s something other than what I already have. But was wondering if anyone else has had any of this before? I sometimes feel like I’m drunk, which I’m not as I no longer drink and I get this pressure feeling in my head, which I’ve had since I was diagnosed but it seems a lot worse now and my joints are hurting a lot more, everything is sore lol. I also have TMJ and that’s been causing me more bother than usual too. I’m hoping this all makes sense and any advice would be greatly appreciated
The symptoms you describe sound like VM symptoms to me. If your symptoms are getting worse it’s time to revisit your medical provider and review your treatment plan. I’ve had long periods of relative stability and then suddenly things got out of control for no apparent reason. It’s scary, isn’t it? Call your VM doc ASAP and make an appointment. It probably wouldn’t hurt to touch base with your primary care doc too. Hang in there, my friend.
Thank you! Everything I have researched says that these symptoms can happen, it’s just so frustrating and as you said, scary. I only have my gp and I’m not sure how much they know, it took forever to diagnose me in the first place. I’ll talk to them and hopefully they’ll refer me to a neurologist again. Thank you for your advice and making me feel like I’m not alone in this. I don’t really tell too many people how I really feel as they don’t understand. Here helps me in so many ways.
If you haven’t already found the VEDA website, check it out. They maintain a list of healthcare providers who treat vestibular patients – it might help you find someone good in your area. You’re not alone.
I’ll take a look now. Thank you
Where are you located? Use search here? There is also Physicians, Specialists, Clinics & Visits
Also take a look at:
The VEDA site list only included chiropractic doctors in my area. If that’s the case in your area, I suggest you also consider a neurologist that specializes in headaches.
Just a suggestion.
Hello, I’m so sorry you’re going through this and the symptoms can definitely feel scary.
What you’re describing does sound like a symptom pattern consistent with vestibular migraine, though. The “disconnection” you experience has been described to me as “sensory dysfunction,” where your brain is not processing stimuli (esp. visual) in the normal way. I used to say it felt like being drunk and hungover at the same time (the sensory dysfunction plus headache) and I concur this is a miserable way to go through the days. It’s also hard to describe how awful it is to someone who has not experienced it. This site was the place where I found the language for describing how this feelst, since so many here have gone through the same. You’re not alone!
The symptoms of vestibular migraine can shift over time—this isn’t that uncommon. And you may be able to get some relief by changing up your treatment protocol. The first migraine preventative I was prescribed was somewhat helpful for headaches, but didn’t help very much with the dizziness. The next med I tried was better for my symptoms. I have also done vestibular and concussion therapy, visual therapy, acupuncture and Traditional Chinese Medicine (all more helpful than I might have expected, especially the TCM). I tried Aimovig for a while. I get Botox in my scalp (which is great!! recommend for headache relief if it’s accesible to you), magnesium IV infusions (good for migraines of all kinds), and do head and jaw stretches and physio (which can reduce the tension-headache element of your headaches and also calm the nervous system overall, helpful for migraine).
So there is no one right way to navigate this illness. There are a lot of treatment options, the downside is that you may have to go through an extended process of trail and error to find the ones that work well for you. This can be frustrating, but it’s very possible to recover well and get to a point where your symptoms are so mild that they’re background noise in your life and don’t really affect you day to day. Just keep going, do what you can each day, grant yourself some grace, and never give up
I’m sorry to hear you’re going through these symptoms. As you can tell from the comments these are both some common and not so common ones and we all experience VM a little bit differently. Like others, I suggest you try to find a neurologist near you who can help more than your primary care doc.
I found one about 15 months ago who specializes in migraines, sleep disorders and VM symptoms. He checks in with me every 2 months, unless I need to contact him before that about some weird symptom that’s new, and we adjust medication and therapy as needed. I’m on my 4th medication which seems to work pretty well but not perfectly and that feeling of a hangover and being drunk at the same time is more than occasional at this point.
Hang in there and don’t ever give up or assume there’s nothing more that can be done. There are answers, they just may take some time and experimentation to find the right ones for you.
Best of luck!
Aaah guys this has been so helpful, thank you! I am going to talk to my doctor tomorrow and hopefully I’ll be able to discuss medication etc with them. Knowing other people have experienced this is a relief (obviously I wish none of us had too) I don’t feel like I’m losing my mind anymore lol so thank you so much.
I’m sorry you’re going through this! I have a lot of the same symptoms. Yes it is very scary. I take Uber a lot and I have a hefty bill. But it is better to be safe than risk driving when you’re not feeling stable.
Yes I have the same pressure in my head mainly on the right side of my forehead. I could swear there’s a tumor in there but I’ve had multiple MRIs and they all come out normal… I’ve had it for about 4 years. One of those years medication verapamil worked like magic. But after 1 year stopped working and I am nearly back to square one. Primarily on gabapentin and amitriptyline. What are you taking? Yes you definitely need a specialist or neurologist. General doctors are no help with this specialized situation.
Hiya, yes I often feel like there’s something going on in my head because it’s such a weird feeling. I also had a MRI and that came back ok. I’m on propanol for the pain and Betahistine for the dizziness, but that isn’t really working. I’ve just kinda put up with the dizzy feeling, but I’m at a point now where I can’t ignore it especially as everything is getting worse. The head pain is constant, sometimes I can handle it but mostly I struggle. I’m trying so hard to not let it affect my day to day, but it’s definitely getting to a point where I won’t be able to. I’m really hoping my doctors can get the ball rolling and refer me to a neurologist again. Thank you for your response
Thank you for this. I have a lot of what’s on these lists, so it’ll be good to use when I speak to the doctor