Anonymous please
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fluid leaks ending does mark the end of an era ! Kudos
Guess what i know many people who stopped meds and even on meds well controlled and all of them say end of day tiredness brings dizziness. Suki who you know, when she wrote to me she said the exact same thing.
Chronic imbalance is rubbish when walking. For a long time i fooled myself into thinking i will compensate and walked and walked, even did VRT in the restroom. Did not help a bit. I am learning to ignore the walking on trampoline sensation.
The most dreaded sensation for me if when you feel everything around is spinning but in super slow motion and rocking and swaying. Then at this point i know its one of the acute episodes.
Try magnesium i highly highly recommend it. It is a natural calcium channel blocker. It is the over-the-counter Verapamil (I made that bit up but you get the point). People sometimes unknowingly take it with calcium which defeats what it does.
Vigs, how long have you had symptoms?
ohhh polls always anonymous…depends though on the subject we can make exceptions…for medicines i would prefer i had names…for instance i can ping James to ask how did you do on Ami ?
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20 months…with one month of no symptoms thanks to the doc who accidentally prescribed prednisone for my vestibular neuritis…later i was told if steroids worked i could have migraine…
Emily we are on the same timezone and we are doing really bad on the sleep hygiene piece don’t ya think ?
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I wasn’t gonna mention it if you didn’t…
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Gnite Emily
Good morning James
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Night all!
Effexor not helping you at all with imbalance? I remember watching a vid a while back i believe her name was svea and she said the rocking and swaying was gone with effexor. She made it sound like most of the symptoms were gone with effexor.
The most dreaded sensation for me if when you feel everything around is spinning but in super slow motion and rocking and swaying. Then at this point i know its one of the acute episodes.
This. Ugghh. It feels like you are on right edge of vertigo but not really. One symptom i have been witnessing for about a month is when i am opening a door. It feels like there is extra oomph to it either when i pull or push to open a door. If i am pulling the door towards me to open it, it feels like there is someone on ther other side pushing along with with you while you are pulling and vice versa when i am pushing the door to open then its pulling from other side. So weird!
Hey you watch a lot of youtube. So do i. Yes i have seen the svea interview. She is on effexor 37.5. I am on 13mg. Anything more than that i cant sleep. I think i can get more relief at an higher dose but i am stuck cos of the activating effect which prevents me from sleeping.
Hey when did you start Xanax ?. I thought you wanted to Amitriptyline. Try effexor if you can.
Maybe I didn’t clarify. I was talking about the past when I was talking about xanax back in november. Effexor was next on my trial list even after seeing so many horror stories here. Svea’s video and you made me want to try it in the future.
every person reacts to every med differently. Keep an open mind and try it.
Yes, and I share a similar diagnosis history with Suki … she’s had a SEH post PLF diagnosis (as well as MAV). I also get “The sound of the sea” which she describes (though it’s becoming more like “The sound of the lake” by the day lol, and sometimes just a kind of low level bubbling almost popping/crackling or does happen at all (which is new))
And on that topic I’ll quote Hain:
“About half of persons with BPPV onset before the age of 50 meet criteria for migraine. There is no reasonable explanation for this association and we are dubious that it exists. Need more data here !”
https://www.dizziness-and-balance.com/disorders/central/migraine/how_migraine.html
Yes, we do indeed!
Again, this illustrates that there is far more to this mystery than the current mantra explains. I have gone into detail on why this might be the case.
My question is similar to this in that I have the diagnosis of VM, but I have just the swaying/unsteadiness without the headache. This is a great web site and I think the advice is applicable to all of these associated disorders. It seems that we have to navigate by trial and error to get to the right combination of therapies. I did LOVE reading that you felt you had
“spontaneous remission” of the rocking sensation. That would be incredible, but I think I’m in this for the long haul like everyone else. thanks for your time, KarenKiki
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Welcome to the forum. A suggestion . . . start a new post where you can introduce yourself and share your VM experience. This post is from 2018 and your posts may get lost on this long thread. It’s now seven years later we know more about VM and there are new treatments available, although it’s still mostly trial and error. There is a wealth of information on this forum, plus support from your fellow travelers when you need it. Please don’t hesitate to join us.
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Just when I thought I understood my Vestibular Migraine symptoms and causes, I had this thread and another older thread pop up as unread on my feed. After reading them, I’m scratching my head, and wondering if I’m having a brain episode, such as a TIA, stroke, or perhaps the early signs of dementia.
Where have these threads been hiding, and why do I now think I have no idea what’s wrong with me, and is the medicine I’m taking doing nothing for me?
When I was first diagnosed with Vestibular Migraine, I remarked that I don’t have headaches. The doctor told me that Migraines don’t always have headache pain. So, who is correct? Why does my treatment seem to work for the most part?
According to Stanford University Medical:
“Unlike the classic migraine, which is described as severe, throbbing headache, vestibular migraine has no pain associated with it 50% of the time. Vestibular migraine causes episodes of dizziness described as rocking, spinning, floating, swaying, internal motion and lightheadedness.”
My attacks range from slight dizziness for a minor attack, to dizziness, vertigo, nausea, visual aura, photophobia and sonic sensitivity for a major attack. However, I can’t recall ever having an actual headache during a vestibular migraine attack. I would have included tinnitus, but I have tinnitus 24/7 even when I’m not having a vestibular attack.
Today, as I write this, I feel a sinus headache coming on. I’m sure it’s a sinus headache versus a migraine because 1) The weather is dipping down below freezing for the first time in over a month. 2) I’ve been trying to clear my sinuses all day from something that is causing a tickle that makes me sneeze. 3) I recognize that a headache is coming on until the headache had passed, or almost passed. Every migraine headache I have had, disabled my reasoning ability as such that I didn’t recognize a headache or migraine was coming on. So I feel reasonably certain that the headache that is trying to break through is not a migraine.
So are Vestibular attacks Migraines? Or, are we not classifying them as migraines because they are not accompanied by a headache pain?
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