Hello everyone. I am looking for some advice and some hope. I’m truly in despair right now. Here’s a little background. I’ll try to make it short.
For the last while I have been dealing with unlocalized vertigo. I basically feel a sense of motion all of the time. A little while back I started to try and figure out what it was. I have had a hearing test, blood tests, and an MRI. Nothing has really come up. Two of my doctors(Neurologist and otoneurologist) think it’s headache related. I did get headaches from time to time too. Well for the last two months I have been on amitriptyline. I thought it was actually going somewhere. I started to feel the clouds lifting and I thought I was getting better. However, a few weeks ago my symptoms kind of started creeping back up. Earlier this week I was still having a good day but the last two days I have gotten worse. I feel pretty awful right now. I feel dizzy but also like numb? Not really in control of my body. Also very stressed and fatigued. I don’t know what to do. Frankly I don’t even know what I have but I just want to start feeling better. Anybody have any hope, advice? Anything? Should I call the doctor back up and see what his opinion is? I am truly shattered as I was feeling better and right now I feel completely crazy. I hope to get some hope from you all.
Don’t worry, you are not crazy.
Yes, it’s a good idea to contact the prescribing doctor - they may increase your dosage or may try you on something else. If it seemed to be working they might favour increasing the dose but get their advice on what dosage etc.
Have you had a diagnosis of Migraine Associated Vertigo?
Have you also been given the migraine diet - foods to avoid? Dr S also recommends avoiding stress and undue exertion/exercise.
Don’t despair - it will take a while to find your balance but you can get there!
So the otoneurologist said she thinks it’s migraine causing the vertigo and the neurologist says he thinks it’s headache too. I went up to 70mg of amitriptyline myself but it didn’t seem to help. He does want me to go up to 75mg and I’m gonna be trying that soon. I also started exercising a few days ago and I was feeling good but I wonder if that’s what started making me feel worse? I wanna get back in shape and I wanna get my life going again but I feel like every time I start feeling better it comes back.
Dr Surenthiran says “don’t overdo it on the good days”
you need to rest, while keeping some moderate activity.
i have the same issue. i was feeling great yesterday, went to the local outdoor pool with the kids, was swimming in the sunshine and then started getting migrainous eye symptoms - no doubt set off by the flashing/sparkling/moving sunlight on the water. yep, and today is worse, headache, brain fog and a bit of dizziness back.
i think they key is to do stuff, including exercise, but to keep it well below the level where it triggers your symptoms.
i struggle with this, on the good days i want to run, do 100 things, work, etc. but if i do too much, it sets me off and i get a bad day.
i try to think of it like a broken leg. it may feel ok in the morning but that doesn’t mean you can go and do triple jump in the afternoon. it’s just a bit harder to gauge with MAV because you don’t have a set timeline like you would with regular physiotherapy.
rule of thumb - do a bit less than you think you can get away with. if you are ok with it, next time do a tiny bit more. but don’t suddenly think you can do everything, because you might well set yourself back.
try doing exercise that will calm you rather than aggarvate the symptoms. i haven’t tried yoga yet with MAV - anybody had any luck with that??
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Yea all of what you said makes a lot of sense! I struggle with thinking I have MAV because I havnt had a headache in quite a while. The main thing I suffer from is just feeling like there is motion happening all the time, and my world looking surreal. so still trying to find a treatment for me and I really hope that I can get back out there and exercise.
I didn’t believe I had a migraine issue either and it was confirmed on my third alternate opinion that I had a fistula. Fistulas are intermittent leaks and produce ALL SORTS of messed up sensations.
In any case I also fit the criteria for MAV. I believe MAV must be caused by something physical as why else would such an extreme set of symptoms suddenly emerge spontaneously?
Yea I find it interesting too that symptoms can change so much even though doctors haven’t found anything physician with me. I’m not doing to well today at all. Very freaked out. I feel like the room is being pulled past me and I keep feeling like the room is going back and forth kinda. I really don’t u der stand what is going on in my body and I’m not sure what to do. Might have to go back to the doctor sooner.