So I was recently diagnosed with MAV and was wondering how everyone felt at the beginning of their diagnosis. I’m pretty much bedridden with some form of constant head pain whether it be migraine or tension headache. I get a lot of pain in my eyebrows and eye sockets and temples. I’m having a terrible time with any scents or smells. I constantly having rocking boat vertigo and pressure in my head to different degrees. I honestly feel horrible. Can anyone share their experiences with me and let me know if this is how they felt at the beginning? Thank you!
Just a quick hello to reassure you that I also had all the symptoms you mention (and more) and so do plenty of other forum members! If you can read up on the info here - you’ll find mav throws us some very weird symptoms & most of us begin to think we must be the only ones who suffer like this. Anyway, welcome to the forum and sorry to read you’re going through such a bad time at the moment. Now you have a diagnosis you can start your recovery - have you been prescribed any meds yet? There are heaps that can and do help mav. Just a question of finding one that suits you - we are all different so it can be that you need to trial a few before finding one that works. I was diagnosed a year ago and have tried a few different meds, found one that is helping & at long last am getting my mav under control.
Thanks Barb! I thought I was crazy because I feel like I’m dying. Luckily I’m in Chicago and have access to doctor Hain. I’m a few days into Effexor and have already been on a small dose of metoprolol, which doesn’t seem to be touching my MAV. Hain is diagnosing migraines by default because every other test came out ok. My mom gets occular migraines and I’m pretty sure my sis has MAV as well (shes on elavil). Hain really pushes the effexor so I’m giving it a whirl.
I saw you said you were on a low dose metoprolol. My neuro told me to try it as a first choice but it made me feel drugged and really tired. You said it doesn’t seem to be touching your migraines, did you feel the same or did it have no effect on your symptoms? x
I actually am always exhausted and have some sort of chronic fatigue going on but yes, metoprolol makes me very tired (I’m only on 12.5 mg a day because I have low bp) my migraines have actually gotten worse since I started it two years ago. I noticed when I did start it, it took an edge off but did nothing for my dizziness etc. My dose probably isn’t high enough too.