Hi - I’ve been having trouble for about 8 months and am wondering if I might be having a MAV or a variant.
My symptoms and history include:
- 4 occular migraines over the past 2 years
- Last fall I started having head pressure especially when walking. This continues on a daily basis. It varies in intensity.
Before this started (and thus why I’m starting to lean toward migraine) I was having dizzy feelings. Not spinning but a feeling of being off balance when walking - sort of like being on a ship. Ears examined in the office and nothing. Was given a prescription for Flonase which I don’t really use.
(I have always had sensitive ears. Motion sickness, etc. My feelings of being off balance have come and gone since college which was many years ago). I also get what I call positional vertigo in that I can be sitting/standing and all of sudden the room spins for a second.
I’ve seen two neuros and had two MRIs (with and without contrast) - both have been fine. The second neuro is a headache specialist who believes this is migraine syndrome and has me starting neurontin.
The muscles in my neck and back of my head are continually tight. My ears feel as if they are full and I’m always trying to pop them.
This year I’ve had episodes of vertigo that starts when turning my head in bed. It feels as if it’s BPPV and I’m scheduled for tests in the next week. But it’s the combo of all these symptoms that has me leaning towards this (MAV). I was thinking it was all muscular but am beginning to wonder.
After reading some of the posts, I always remembered that I had a bizarre whooshing sound in my ear last fall around the same time all this came to a head (no pun intended). I also got motion sick watching a movie and have become sensitive to movement on screens.
Does any of this sound familiar??
many thanks for any advice/thoughts.
I’m a 55 year old female.
Well, you could be describing me, and I have been diagnosed with migraine associated disorder. I get visual auras (without headaches), an unsteady type dizziness (not spinning), fullness in the ears (especially one), motion sickness and semi-queasy, sensitivity to movement on screens and around me, tense muscles in my neck and back of head – and all on a nearly continuous basis. I am a 52 year old female. So yes, it does sound very familiar. As for advice, I’m afraid I cannot give much, since I’ve not found the answers myself. I have been trialing 80 mg daily of Propranolol for a month now, but no improvement so far. Hope the neurontin begins to work for you.
Angela
Thanks for responding Angela -
I too worry about other diseases - thinking that this is something sinister.
The muscle tension and ear fullness is pretty full time except when at rest. I had one neuro suggest a spinal fluid leak (due to positional head pressure issues) but the MRI with contrast did not suggest the need for a spinal tap.
I’m so appreciative that you responded. I feel nutty most of the time when discussing my stuff. All of this came to a head after a really stressful period so I think people think I’m a kook and just stressed.
I also have a hyperactive peripheral nerve system and I sometimes wonder if it’s related as well.
Hi, it could be MAV and it could be something else, unfortunately there is no test that gives a definite yes or no and each doctor seems to have a different opinion. But your symptoms certainly point towards is. Most likely is itsn’t something sinster as you fear. I’ve been on this board and several other dizzy boards for years and only in a small handful of cases was it something not real good. Usually the doctors can’t even figure out what it is but they know enough to be able to tell it isn’t “bad.”
Like you I am very sensitive to motion on the screen and can easily get carsick watching a movie (my friends just don’t get it when I tell them why I don’t want to go to the movies.) I was this way long before my vertigo started. Sensitivity to motion is very common among MAVers as are many of the other symptoms you mention.
Sometimes it’s quite a journey to figure out what the problem is. I hope the meds you try give you relief you need.
HI,
Just the fact that you’ve had “4 ocular migraines” does in fact say you have the chemistry of migraine…which is as complex and confusing a diagnosis as they come. The list of strange feelings and maladies associated with migraine is way too long, unfortunately.
I wouldn’t worry about something more sinister…it probably isn’t anything else, and the worrying only makes things worse.
Work on your triggers, and if you are open to it, trialing a medicine if diet/trigger avoidance doesn’t help.
I went to Dr. Hain in Chicago with what I thought was a complex case…he almost didn’t think MAV until I told him about my 2 ocular migraines…then he said that nailed it. Bummer.
Kelley
— Begin quote from “spb1126”
Thanks for responding Angela -
I too worry about other diseases - thinking that this is something sinister.
The muscle tension and ear fullness is pretty full time except when at rest. I had one neuro suggest a spinal fluid leak (due to positional head pressure issues) but the MRI with contrast did not suggest the need for a spinal tap.
I’m so appreciative that you responded. I feel nutty most of the time when discussing my stuff. All of this came to a head after a really stressful period so I think people think I’m a kook and just stressed.
I also have a hyperactive peripheral nerve system and I sometimes wonder if it’s related as well.
— End quote
You are welcome!
Yes, I do worry too much about whether something more sinister might be going on. I’m trying hard to stop those thoughts, but when you feel so miserable most of the time, it’s hard not to. Meanwhile, I know what you mean when you say that people just think you are stressed and “a little nutty”. That’s the trouble with this disorder: others put down the horrible symptoms we are dealing with as anxiety only, when that is definitely not the case.
How have you been lately?
Angela
Definitely could be MAV. I also had ocular migraines which helped diagnose me. I have definite off-balance and vertigo feelings when I get sick, but like you, I have a lot of ear fullness which neurologists (even the more well-known ones) typically find atypical. In fact, my initial symptoms started with me thinking I had a really bad ear infection since I had so much pain and pressure with my ears. I have since found out that my ears are worse when I eat nitrates or drink red wine or when I have a really bad headache or other spell. Otherwise, they are mostly pretty well controlled, like my other MAV symptoms, by my migraine medicine and diet/lifestyle now thankfully.
That being said, a comment about the Flonase… doctors who didn’t know what they were diagnosing initially prescribed me nasal decongestants which actually were making my symptoms worse. Flonase specifically I later determined to be one of my biggest migraine triggers, which was unfortunate, as I had been on it for about 15 years for a dust allergy. I now know I can’t really handle allergy medications well at all since they make me dizzy. Something to think about though since you said you’re not taking Flonase very much, but it could also be aggravating any symptoms that you are experiencing if it is in fact MAV.