So For the past 3 days I’ve been feeling a different type of dizziness. I feel like it’s coming from my head and eyes instead of my usual rocking/swaying dizziness.
It’s like I know I’m here in this moment but I’m not, I looked in the mirror and it was like I knew what I was looking at but from “outside”, this is definitely what I would describe as as an out of body type of thing …gosh this is harder to explain than I thought. It feels like I’m forcing myself to think plus I feel like I’m in need of a nap but a nap does nothing to the symptoms.
I haven’t ever had the rocking/sway dizziness, I have only ever had what you described - dizzy in my head, like a drunk, floaty, swimmy feeling. My eyes always felt strained and pulsing as if they were flicking over and back, they also felt like someone had woken me in the middle of the night and switched a bright light on or like I had been out in the sun and walked back inside and my eyes were constantly trying to readjust from the sunlight.
I have also experienced what you mean about looking in the mirror - you know that it’s you but it’s like you have seen yourself for the first time - it’s a strange surreal sensation …or it’s like when you have gotten up with a serious hangover and can’t quite focus and are looking in the mirror saying is that me?
The “out of body” thing you describe is what I call feeling disconnected from the world, out of step, like when you have a head cold and you feel like your head is underwater or you feel like you are “here” but looking at the world from behind several panes of glass or from 50ft up in the air.
Thank you @Mav for the quick response. For some reason It always makes me feel better and less weird when somebody comes forward and says “me too” …thank the lord for this forum
They took my mirena out Tuesday morning and that same night is when I started feeling the “fog” so I don’t know if this is the so called Mirena Crash or just a new symptom from the MAV
Absolutely agree it’s reassuring to hear that others have the same symptoms. Have a good read thru the “user support wiki” - there is a link in the banner at the top of the page. There is a list of symptoms which will provide more reassurance for you and some great advice on meds, there is a med poll too which shows the most popular meds used by the folks on the forum.
I am not familiar with the symptoms associated with the mirena crash so I think that only time will tell you for sure it it’s related to that or not. I don’t know very much about the mirena but I thought that it provided the progesterone hormone only locally to the uterus and not systemically so if that’s true then I would suspect it’s not the removal of the mirena. Some of the other members here might be able to give you advice on this.
ive had that, once i explained it to a doctor and he starting asking me questions about psychosis and double personality. I was like “mhh nop, it my mav”…
Look up derealization/depersonalization. While linked to other scary diagnoses, they are common with anxiety disorders, including the dizzy disorder call PPPD.
Brain fog for me is more like not being able to concentrate or verbalize words- carry on conversation. Trouble doing simple things like writing a check. Feels like dementia!
@napagirl holy cow!!! Just did some research and even found a post here from 2012 …the more I learn about vestibular disorders the more scared I’m feeling
As @napagirl says that’s more ‘derealisation’ I’d say, It’s quite common with MAV. You’ll find a possible explanation here. Quite a feasible hypothesis.
Don’t let it scare you. Not any of it. MAV will escalate with fear. It’s nothing magical. It is not terminal. It will not kill you. You aren’t going crazy or imagining it. It’s just a medical condition. Something has affected your balance and that has made you brain hypersensitive to various sensory stimuli so all manner of seemingly strange feelings will occur. They will surprise you but please don’t be scared. I’d suggest the best way to avoid being scared is to try to understand what’s happening. Helen
agree with Helen, dont ger scared, the more you know about it the more it helps to go through the symptoms with even a bit of curiosity and even being amazed at how brain functions.
Today the feeling is really bad! As soon as I woke up I knew it wasn’t gonna be a good day but the more time isn’t passing the more I’m feeling it. I’m here but I’m not, I’m so scared, I’m in my room pretending to watch tv so my two daughters don’t realize I’m not ok (they get too anxious when they know mom is sick specially the 5 year old), husband is working and I can’t stop crying …I’m so scared, I can deal with all the swaying, rocking but this that I’m feeling is too much for me, what do I do? Do I call the Neurotologist again? Do I make an appt with psychiatrist? …I feel so lost
@Diana21 what meds are you taking for this?
My Neurotologist put me on Valtrex since my VNG showed my issues are coming from the central part and he said it could mean migraines or virus inside something really small located very deep (I forgot the name) …I’m on my second shot of aimovig for my migraines for Neurotologist told me to talk to neurologist first to see what his opinion is on most likely being MAV …I see neurologist next Thursday, Neurotologist in a month
Ahh ok. If they put you on a preventative for vestibular migraine, perhaps ask about one that works for anxiety as well, like effexor or nortriptyline. Did they say how long it should take for the Aimovig to work?
I am on Effexor the extended release version (here in Ireland it’s called Venex XL). I was prescribed 37.5mg once daily to take in the mornings but I decided to take it slow and so I opened the capsules each morning - they contain 3 beads of 12.5mg each - I started by taking 1 x 12.5mg bead each day and then increased by 12.5mg daily each week - I am now up to 75mg and a lot of my symptoms are much improved including that derealisation feeling - I still feel off balance if I go out walking or in noisy artificial light environments like shopping centers but I am hopeful that the 75mg which I reached yesterday will help with this. I had tried Venlafaxine immediate release tablets before but I had some side effects which made me quit them - I am delighted to say that I have not experienced any side effects on the extended release version. I am a very anxious person anyway but this condition caused that to escalate dramatically, I am very pleased to say that the Venlafaxine has had a huge positive impact on my anxiety levels too.
The most popular meds for this condition seem to be:
Beta blockers eg Propanolol
There are also anticonvulsants such as Topamax and Gabapentin but they seem to have a lot of side effects, I tried Gabapentin but I couldn’t stick it.
Hope this helps
Hi there. I just want you to know you are not alone. This is exactly how I feel 24/7 and Karen “Mav” describes it perfectly.
I have gone from a confident, happy, very outgoing person to an anxious, nervous wreck! Who wouldn’t with these bizarre, awful, symptoms. Everything you are feeling is completely normal, so don’t beat yourself up!
I thought I was going mad when this all started and doctors said it was stress as I’d just had a baby. I knew something didn’t fit thou as I kept having extreme head pressure episodes with blocked ears.
I am no doctor so best to get their advice but from my personal research and talking to ppl Effexor seems to help with these set of symptoms. I am currently on Nort 40mgs and no real progress as of yet but I’m trying to be patient.
If you ever need to talk, please just reach out. I too have two small children and know how hard it is to put on a brave face when you feel terrified inside.
I agree with @napagirl, I think it makes sense to try Amitriptyline or Nortriptyline. I am on 25mg of Amitriptyline and it was a big help for anxiety/insomnia. Of course CBD oil, walking, meditation, less work, etc… are all helpful too.
Hope you are feeling better soon. I know exactly how it is being alone at home trying to take care of kids, it’s super tough but you will get better - you’re doing the best you can. My favorite quote that kept me going was “as long as you’re still breathing, there’s more right with you than wrong with you”, or something like that