I have a question for people who have Migraine Associated Vertigo - what is your list of symptoms from MAV? I’d like to know to help me figure out if that’s what I have or not.
I am experiencing several problems that are greatly interfering with my life. I am seeing many doctors, but am getting different opinions. Two of the doctors I have seen think I have Migraine Associated Vertigo. But some of the other doctors don’t think it’s that. One of them thinks I may have Meniere’s Disease, and a couple other doctors don’t really know. I’m wanting to hear what others’ symptoms of MAV are, to see if what I have going on is similar.
Currently, my symptoms are 24/7 dizziness/vertigo/off balance, headaches about 50% of the time, chronic fatigue, an overall shaky feeling, a feeling of a heavy head, and sometimes brain fog. My problem started about 3 years ago - I would have 8-10 hour episodes of dizziness/vertigo, headache and fatigue. These episodes would only come about once every other month back then. Then they became more frequent over the years - once a month, twice a month, then once every week. In October I got off my birth control pill, and then all of a sudden I had episodes every day, but they wouldn’t last all day long. This went on for all of October and November 2011, with an occasional good day. Then suddenly at the beginning of December, the dizziness/vertigo was 24 hours a day, every day of the week. And that’s where I am now.
I’ve had one neurologist say she thinks’ it is MAV, and a different neurologist say she doesn’t think it is MAV. One ENT I saw thinks it’s MAV, and the other thinks it’s Meniere’s. One doctor says he doesn’t think it’s MAV because I have so many other symptoms besides headaches and vertigo. I’m getting contradicting opinions, so I would appreciate any comments from you all. I feel like my life has been taken from me, and I am so close to losing my job because of all the work I have missed because of my illness. Thanks.
Hi Lauren!!
Gosh, not even sure where to begin with my SX list :mrgreen:
A first tell tale sign for you would be if any family member has migraines. Once I learned that my sister had migraines, my DX was there and meds were started.
SX:
woozy head, fatigue, tingling around upper lip, bridge of nose and creepy crawly sensations up and down scalp. Mental fogginess, inability to pull words up when in conversations,twitching eye, eye floaters, brain feeling like it is playing bumper cars with my scalp, feeling down, nausea, lots and lots of nausea for me, vomiting, fullness in ears,eye sensativity, the occassional aura, sensativity to loud noises, eye tearing, facial flushing, the yawns, facial sensativity.
I think this might be it!!
I am on 3 daily preventatives and have been for 4 years. My sx are all the time…there is rarely a time that I don’t. The meds though, keep me at about 90% functioning.
I would highly reccomend “Healing Your Headache” by Dr. David Buchholz. This book along with message boards such as this kept me going through a VERY VERY dark time. Don’t let the title of his book fool you, he lists ALL SX of migraine not just headache…so really the biggest thing I learned was Migraine does not = headache.
Hang in there Lauren, you are further along and closer to a DX than I was. NOONE had ever suggested to me that my SX were MAV…It took me searching and searching on my own to come up with MAV. Before that I was DX with VN, had brain MRI, several neaurologists etc. I was very very very depressed during this time. I felt like my world was closing in on me, and noone could really understand all my “bizarre” symptoms. I looked fine on the outside, yet had sooooo many internal things going on.
Stay close to these boards for encouragement, pray, meditate, and get the book.
Your symptoms are mine exactly. I have had really good days. I’m having a flareup now and very anxious for it to end. It is frustrating and I feel robbed of my freedom. It will get better. I was bedridden at one point but after verapamil, diazepam, diet and sleep schedule I got back on track. Just a flareup now I guess. Your symptoms are all to familiar.
To be honest the symptoms of vestibular disorders have so much cross over that I don’t know how helpful it will be to you to hear how others feel. The chances are the answers will be largely the same with different variations of brain fog, vertigo, lightheadedness, generalised dizziness etc…
Possibly more useful to you might be to explain the symptoms that caused the doc to suggest you have too many other things going on. What are those other things? We may be able to identify if they might fit in with migraine or not. I am presuming you have had all the usual balance tests, blood tests, /MRI etc… to pick up anything else that might be going on. Also, generally to get a menieres diagnosis you would need to have low tone fluctuating sensoinural hearing loss. Do you have hearing loss? There used to be a diagnosis of atypical menieres which was without hearing loss, but now it is understood (by those doc who are up on the latest research in this area) that this is in fact migraine. ENT’s are often quite keen on diagnosing menieres as they aren’t familiar enough with MAV.
MAV is a diagnosis of exclusion, you rule everything else out through tests and then it becomes apparent that it’s probably MAV. In your shoes, if I had covered all the ground tests wise, my angle would be to try a migraine preventative (or a few, it often takes a while to find the right one) and then see where you are. Did any of the docs who don’t think it’s MAV have any suggestions other than menieres?
For what it’s worth I think it sounds a heck of a lot like you have MAV that started off as episodic and then morphed in to 24/7 symptoms. Many people on here have or have had symptoms 24/7 before medication.
Thank you for your responses. One of the doctors who said I have so many other things going on besides headache and dizziness, thought it sounded strange to get a MAV diagnosis because I have chronic fatigue, the brain fog, shakiness, and I am low in vitamin D and iron. His first thing he tested for was to see if my adrenal glands were functioning properly, which we found out they are, for the most part. He thought my cortisol levels might be off, but when I tried taking a cortisol pill when I was feeling really bad, it never helped. My biggest question: is chronic fatigue a symptom of MAV? I am seriously tired all the time, and never feel like I got enough sleep, even when I sleep a LOT. I don’t feel like I ever have that much energy either. I am only 31.
Hannah, you asked if I have hearing loss. The first ENT I went to who thinks I have Meniere’s Disease thought that I had a mild low tone hearing loss. But the second ENT I saw who thinks I have MAV, from looking at my hearing test, said that my hearing is in the normal range, so he dismissed that and said he thinks it sounds a lot more like MAV than Meniere’s.
I have had an MRI, an ENG, and bloodwork done. All came back normal, with nothing that would explain my symptoms. I have appointments set up with an infectious disease doctor and a neuroopthamologist to see if I have excess spinal fluid causing pressure in my brain (the only thing that came up on my MRI as a possibility, but the neurologist said most likely it’s nothing). I am currently doing treatment for MAV, since I have a neurologist and an ENT who both think that’s what I have. I am taking Nortriptyline 25 mg, and it hasn’t helped yet, but I have only been taking it for 4 weeks so far (supposedly it takes 6-8 weeks to see if it will help). I’m praying it helps, but who knows, because I don’t even have a final diagnosis yet of MAV. Thanks everyone for your thoughts and help, I really appreciate it.
Hey Lauren!
You are correct about giving the Nortriptalyne more time to see if it is helpful for you. Also, you just might need to add in another preventative as well. I am on 3 daily preventatives and have been for 4 years.
Dr. David Buchholz (Heal Your Headache and Top Doc) believes there is a link between CF and MAV as well as Fibromyalgia. Also Fatigue is a huge SX for most MAV’ers if not all.
Hang in there!!
Pam
Pam asked an important diagnostic question - any family members with a history of migraine of any kind? Siblings? Parents? Aunts or uncles or grandparents? Or, as in my case, any relatives who SAID they had “sinus headaches” a lot? Most people who think they have “sinus headaches” are in fact migraineurs. Another clue: did you get motion sickness as a child? (Maybe not so much now - a lot of people with MAV had motion sickness when young but grew out of it; some don’t grow out of it, though.)
Best of luck; hope that a little more time on the Nortriptyline will bring you good results!
Hannah’s advice is spot on - we all have similarities but then many of our own weird and wacky symptoms, plus, they can and do change over time. So, trying to align your symptoms precisely with any of us will prove a slippery exercise. As Hannah also said vestibular disorders have a tendency to mimic each other as well as a number of other conditions.
In ‘favour’ of a migraine vs Meniere’s diagnosis is that migraine is extremely common and Meniere’s disease is quite rare. In addition, the fact that your symptoms increased with a hormonal change (coming off the pill) is more indicative of migraine than Meniere’s disease.
If you want to get some more descriptions of symptoms check out this thread:
My maryalice, yes I did forget to answer that question, sorry. My mother has headaches and she thinks they might be migraines, but she’s not sure about it. But the headaches are pretty bad and she has to take Ascomp with Codeine sometimes when they are really bad. Other than that, I don’t know of any other family members who have migraines. My mom did say that for years she would wake up with a headache every morning, and after tons of testing, they found out it was a hormone imbalance. She now rubs a hormone cream on her face every night before bed and the morning headaches have stopped. Since my symptoms started almost every day after getting off the birth control pill, I feel like it has to have some link with that. I had an endocrinologist test my female hormones, and they came back normal. So that leaves me baffled.