Hi everyone,
I had the scariest experience yesterday. I was sitting watching tv (what I do everyday now since I’m dizzy all the time), I went to get up (not swinging around quickly, I was sitting up and just put my legs over the couch to go to stand) and the world started to spin (rotational). It did “settle” down, but then my balance was worse than normal (I basically had to hold on to my husbands shoulders and be dragged/shuffle in order to move). He took me to the ER, which was backed up, we spent 5 hours in the waiting room, then another 12 hours in a curtained room in the back until I saw a doctor. By the time I saw the doctor my dizziness had returned to baseline (which is bad, but not the way it was). Also, I know it wasn’t bppv because I was flipping from side to side and leaning back in the hospital recliner and also laid flat on the ct scan table, with bppv that would have been impossible.
Has anyone ever experienced this? Out of the blue vertigo followed by horrible/worse than normal balance and increased positional dizziness for hours then returning to baseline dizziness? I don’t know if this is related but before I went to get up I was massaging the back of my neck pretty hard pushing on the muscles on the side of the spine and even running my fingers a little bit hard up and down and between the neck vertebrate.
I’m terrified it’s going to come back! I’ve had bppv 4 times and that was bad but at least I knew it was due to ear crystals and head positioning, this is unbelievably scary because it’s like my body is turning on me by giving me my worst fear (once you’ve had bppv vertigo, you are terrified of it for life). The neurologist I eventually saw (after they transferred me by ambulance to a different hospital) has stopped the topamax and now has put me on serc and propranolol before sending me home. I had to fight for the propranolol since all he wanted to do was put me on serc, i was like- ok but what about the migraine, which I’m pretty sure is what caused this? I’m getting to my breaking point here and kicking myself for not asking for some sort of relaxant to help me through this. I’m also scared to take the propranolol due to the potential side effects.I’ve never experienced spinning vertigo outside of bppv before. Help!
Hey Ellen,
Sorry to hear you’re having a rough old time. Hopefully you didn’t stop cold turkey on the topamax and tritrated off it, be mindful that a common side effect of propranolol is dizziness as it lowers your blood pressure. So while on it you may feel a new type of dizzy amongst everything else, however you may not get any side effects. If you do, choose another to try, there are heaps of alternatives.
I get weird out of the blue strong vertigo smacks when I deviate from the migraine diet, but mine usually pass. Maybe these vertigo type attacks you’re experiencing are breakthrough like symptoms, like the pressure is building and fighting against a barrier and all of a sudden the flood gates break and it takes a while for the flood waters to retreat or the meds to push it back down. Perhaps increasing the topamax would have been worth a try.
Goodluck with your recovery.
Ellen
The rotational vertigo can definitely be one of MAV symptoms. Explaining about your neck massaging makes me quite suspicious that the deep massaging may have triggered the vertigo. I had this happen to me when I visited a chiropractor -why did I do that ? - because I had such a stiff/sore neck & a good friend recommended him. Lesson learnt!
Saw my GP the next day who told me there is a nerve running down the neck/spine which when pressed hard enough at a certain point can trigger vertigo. My physio did some ‘cranio-sacral’ therapy on me this morning & I was dizzier than when I went in!
Was the neurologist you saw in the hospital the one who diagnosed you with MAV? I don’t think Serc is often prescribed for vertigo in MAV patients. I agree with Krystal, stopping the Topamax ‘cold turkey’ is not advised! If he is not the same guy I would suggest a phone call to your diagnosing specialist & ask for advice before stopping/changing meds.
Barb
Ellen
The rotational vertigo can definitely be one of MAV symptoms. Explaining about your neck massaging makes me quite suspicious that the deep massaging may have triggered the vertigo. I had this happen to me when I visited a chiropractor -why did I do that ? - because I had such a stiff/sore neck & a good friend recommended him. Lesson learnt!
Saw my GP the next day who told me there is a nerve running down the neck/spine which when pressed hard enough at a certain point can trigger vertigo. My physio did some ‘cranio-sacral’ therapy on me this morning & I was dizzier than when I went in!
Was the neurologist you saw in the hospital the one who diagnosed you with MAV? I don’t think Serc is often prescribed for vertigo in MAV patients. I agree with Krystal, stopping the Topamax ‘cold turkey’ is not advised! If he is not the same guy I would suggest a phone call to your diagnosing specialist & ask for advice before stopping/changing meds.
Barb
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I was doing really well and yesterday I had a deep tissue massage mainly on my neck and wham, i have vertigo again, after being totally clear of it. I do believe the massage may be the culprit bc right after the massage i felt dizzy and today its really bad. I’m hoping to feel better soon. ugh stupid massage. who would have thought.
That is a mav attack. That is what I experienced from ages 11-30. It hits out of the blue, fast spinning room. Pay attention to your diet and lifesyle- did you get enough sleep? eat? under stress more than usual? it’s absolute hell. when it hit for me, i’d go outside and stare at the horizon and try not to panic.also have valium on hand
I also get attacks of vertigo that feel very positional but hit sporadically (in any positon.) I can be watching Tv, at the dinner table etc. They scare the living daylights out of me. Sometimes they pass quickly and I am just more off balance afterwards. Other times if I go into ‘attack mode’ , I often find particular positions make it worse after the initial spell and it’s not BPPV - I have been tested during my attacks. I have been told it’s most likely MAV. They often hit around my period. It’s no fun!! I can symphathise.
