For those that get Vestibular Migraines with their fibro....do you get dizziness between attacks or dizziness all day every day? Is your dizziness a vertigo where the room spins or is it more of a general distoriented, heavy head/motion sick, unsteady dizziness? Do you get pressure in your ears at random times or sinus congestion that comes and goes despite whether or not you have an actual headache? Did you have a history of migraines before you got Vestibular ones? How old were you? Does… read more
I am so sorry you are going through this, that anybody has to go through this. And yes, sometimes when the symptoms get really bad I feel unsafe. I have fallen at times when it is bad so it is not unjustified.
I also know exactly what you mean about feeling as if your walking is twisted. For me, this manifests as if my two feet are on two different surfaces, one feels as if it is hitting the floor about 4 inches higher than the other when I walk (if that makes sense!). And yes, it is very hard for people to understand unless they have experienced it themselves.
I just want all to know that while it is a tough road to walk, with medical support and medication, physical therapy and psychological support you can get to a much better place where you are able to cope with your condition well, with good quality of life. Finding a way to stop the vestibular migraines is key. Finding a way out of 3PD (PPPD) if you have it is harder, takes longer, but is absolutely possible. It's not all roses and sunshine, but it can be a lot better. You may have to fight for help, particularly on the medical front. (I spent over ten years dealing with vestibular migraines and 2 year-long bouts with 3PD, the last which almost killed me, and went through 3 neurologists telling me there was nothing neurologically wrong with me (even though I could not stand or walk properly) before I finally got an an appt with a neurologist who specializes in dizziness disorders who diagnosed me within 5 minutes of seeing me and offered the first real help. I did not give up. I knew it wasn't all in my head, that I needed help, and I had to keep trying and keep advocating for myself, because nobody else was going to do it for me. FYI I had to do this for my fibromyalgia diagnosis as well. You probably have had this experience too - so many of us have. It is really wrong how hard we have to fight to be believed, and to be helped.
Unfortunately dizziness specialists are few and far between but if you have a good doctor who is willing to listen and work with you that is a good start. And then of course, you have to follow the program whatever that may be (medication, physio therapy, psychological support, etc.) but you can get better.
And the psychological support is not because this is a psychiatric condition, which some old school medical professionals like to believe. It is so you can work through the anxiety and fear regarding the awful things happening to your body which you feel like you have no control over, with someone who is trained to listen and help re-frame your thinking into a less harmful, more positive way of thinking that helps you to adapt to what you are going through. I would not be here without my therapist.
Hang in there! xx
do you get dizziness between attacks or dizziness all day every day?
Answer: not all day every day but at acute times can seem that way.
Is your dizziness a vertigo where the room spins or is it more of a general distoriented, heavy head/motion sick, unsteady dizziness?
A: the latter (not true vertigo where room spins but strong enough to make it feel difficult to stand)
Do you get pressure in your ears at random times or sinus congestion that comes and goes despite whether or not you have an actual headache?
Did you have a history of migraines before you got Vestibular ones? How old were you?
Answer: Yes, started age 20 though I had "alice in wonderland syndrome" as child. Later found out this is considered a migraine condition.
Does laying down usually give you pretty immediate relief?
Answer: Yes- sort of. But still can feel woozy.
I hate that there are so many "wordings" - makes it all so confusing! Migrainous vertigo is vestibular migraine. Surprised you got a letter to tell you - do you get to talk to the doctor who sent the letter?
@A MyFibroTeam Member, you may already be aware of this but have you checked out The Dizzy Cook?
Alicia has SO many invaluable resources, tips, and of course, recipes.
Another which you may already be connected to is Migraine Strong. They have a site, blog, and a Facebook group, and more.
I am not diagnosed with VM but I do have migraine disease and deal with dizziness/vertigo as a symptom but not 24/7.
My heart goes out to you for what you are going through and I hope you get answers, support, and help.
We never share your personal information with anyone.