I have a very hard time sometimes wondering if I have or have not gotten the correct diagnois of my condition.
While many of the symptoms I have seem to be very much in line with the MAV there are other symptoms that
I question whether or not this is correct. I guess part of the problem I have and have been having is that it is a diagnois of exclusion and not something tangible that we can see on a test or by other means.
When I list all my symptoms that have transpired over the last couple of years I often wonder if I am going down the correct path.
While I had the VERTIGO spinning intially that is not what bothers me everyday (thank goodness). And all of the other symtoms …
pains in various area of the body
muscle twitching all over
bad leg pain
pulsating in my ear
numbness in arms and legs ( everyday now when I wake up)
STRONG vibration in my abdomen area at night
vibration now in neck
constant rocking feeling or on verge of spinning
nausea which has increased a lot over last several months
itching and rash appearances on body
very cold feet all the time
weight lost
dizzy feeling as soon as put food or drink in mouth even before swallowing
hair loss on legs
head fullness
ear fullness
heavy head
sweating in abdomen area only at night or if lay down
very tired all the time
stomach issues all the time
and there are others …but those are the main ones.
I guess I just want to make sure there are not other areas to explore or other avenues to have looked into…I am sure some of this is migraine related as I suffered from the headaches for years I just read and see where some of these could also be linked to other illness or diseases…
I am feeling a bit helpless as of late as my family just does not understand what I am going through and thinks I have just accepted this as being as good as it is going to get …and right now it is anything but living. Just a very sad existence wondering if it will ever get better.
Yes, I do wonder. I have been diagnosed with just about all the main vertigo disorders at one time or another. How am I to know if one of them is right or wrong? I also have a lot of oddball symptoms which may or may not be related to vertigo problems (abnormally low temperature, bad hip pain, weird sensations in my lower right leg, sharp pains in my left foot, nauseated feeling, to name just a few).
Meniere’s is a disease of exclusion as is MAV more or less. There doesn’t seem to be any definitive way to test for any of them. My vertigo went away for about a year and now suddenly it is back, bad as ever. I don’t know what way to go with this and it almost seems worthless to go to the doctor cause what’s he going to say, “oh, yeah, your vertigo is back, well, that happens sometimes, here’s some meclizine.”
I want to know what I have FOR SURE so it can be properly treated. My diet is pathetic as I have given up just about everything except cardboard (and chocolate when I feel like cheating), yet I continue to feel motion sick day after day, often with no provocation.
I want to know what I have FOR SURE so it can be properly treated. My diet is pathetic as I have given up just about everything except cardboard (and chocolate when I feel like cheating), yet I continue to feel motion sick day after day, often with no provocation.
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Exactly, I actually had a bite of chili last night and that was a treat. Although if I eat much of anything I am sicker than I already feel…to know FOR SURE would be a great thing .
Timeless, who diagnosed you with MAV? Did you have all the usual tests etc? How long ago was that?
Brenda
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First an ENT and then a local neurologist and that was done November 2008 and January 2009. Yes, I have had MRI, CT Scan, VNG, and all the other test. Many of the other symptoms did not manifest until after the initial diagnosis.
Hi Tiimeless,
It may be possible that you have MAV but not all your symptoms are attributed to MAV. The head symptoms for sure, heaviness, rocking, etc. The other symptoms you might want to explore with doctors outside of neurologists and ENT’s and see what they have to say.
lisa
pains in various area of the body
muscle twitching all over
bad leg pain
pulsating in my ear
numbness in arms and legs (everyday now when I wake up)
STRONG vibration in my abdomen area at night
vibration now in neck
constant rocking feeling or on verge of spinning
nausea which has increased a lot over last several months
[size=150]itching and rash appearances on body[/size]
very cold feet all the time
weight loss
dizzy feeling as soon as put food or drink in mouth even before swallowing
[size=150]hair loss on legs[/size]
head fullness
ear fullness
heavy head
sweating in abdomen area only at night or if lay down
very tired all the time
stomach issues all the time
and there are others …but those are the main ones.
I have highlighted the only ones that I can’t see being attributed to MAV. Some of the others could also be a result of anxiety (from the MAV) … do you feel very anxious at the moment?
everyone, all you can do is read read read on various dizziness disorders. I’m confident after reading up on a lot of things, that either I have MAV or MdDs or something that’s yet to be found in literature. Regarding MAV vs MdDs it doesn’t really matter cause treatment is about the same anyhow. I don’t care much what you call something, I just want to stop feeling sick…
Nope, I don’t doubt MAV at all. It took me 2 years to realise I was dealing with a migraine problem though and, since then, it has gotten worse really. I’ve also discovered that my grandmother had migraine and my mother does too. She reacts to trigger foods in the same way I do – upset stomach, head fog, ill feeling the next day. I think I get mostly text book stuff – either dizzy or headachy but never both at the same time.
No, I don’t doubt that I have MAV. It took years of tests to get here and now that I understand more about this condition I am satisfied the diagnosis is correct.
Timeless, MAV has a huge range of symptoms. Don’t forget though that just because someone has MAV doesn’t mean they can’t also have other stuff going on. Great huh?
I don’t doubt my diagnosis or condition, but a lot of friends and relatives do. One woman says to me, “Of course you’re frustrated; you haven’t even been really diagnosed.” People at church say to me, “How’s your ear thing?” Talk about a pet peeve.
How do you explain to the average person that your vertigo is due to migraine? People expect a hard-and-fast explanation; there is none. MAV is hard (I think) to summarize in a way that people will “accept.” There should be a more “user-friendly” term than “vestibular migraine” or even “migraine-associated vertigo.” Not the most precise terms, really.
I think it makes sense to see all manner of strange or seemingly unrelated symptoms. Seems like the brain is completely confused and “overloaded” (even in handling the simplest things – its ability to make sense of most input is gone). I’d speculate that the brain (can) lose some of its capacity to properly “monitor” the rest of the body and interpret the signals it receives.
“I have a neuorlogical condition (I hate the words disease or illness) called migraine. The most common symptom of migraine is headache as most of you would know, but migraine is much more than just getting a bad headache. Guess what the second most common symptom is after headache? Vertigo and dizziness. This condition affects 36 million Americans or about 1 in every 10 people. It’s as common as apple pie and you must have heard of apple pie.”
Nice definition, especially the bit about the migraine pie. My own pet peeve though is the headache thing. I don’t get headaches, at most I’ll have a “hungover” head. Perhaps we could say instead:
The most well known symptom of migraine is headache as most of you would know, but headaches are just one manifestation of migraine and many migraineurs do not get headaches as part of their migraines at all. Migraines include many different auras relating to vision, hearing, in fact all the senses, including dizziness… It is also possible for migraineurs to get stuck in a “cycle” of migraine which means their symptoms can last for days, weeks or months…blah blah blah. Watcha think?
I think if you threw that at somebody who knew nothing about migraine they’d be lost. lol. How 'bout this?
“I have a neuorlogical condition called migraine. The most common symptom of migraine is headache as most of you would know, but headaches are only one part of this for some sufferers. Many with migraine don’t get headaches at all! Guess what the second most common symptom is after headache for people with migraine? Vertigo and dizziness. Sometimes people with this get stuck in a “cycle” which means their symptoms can last for days, weeks or months. Migraine affects 36 million Americans or about 1 in every 10 people. It’s as common as apple pie and you must have heard of apple pie.”
Timeless: In reading your list of symptoms what “jumped out” at me was the hair loss on legs. I don’t know your age but could this possibly be a symptom of menopause or a hormonal imbalance? My MAV started at age 49, just the beginning of the transition. Menopause and hormonal fluctuations are a huge trigger for MAV so in addition to all the MAV symptoms you get to suffer all the menopause or hormonal fluctuation symptoms and some of them do overlap.
I just explain to people that while many people with migraine usually have terrible head pain, there are others, like myself, who get dizzy.
What I’m curious to know, at this point, is how much of what I experience is related to my vestibular loss and how much is migraine related. The neuro thinks very little of my vestibular loss dx. He believes the extent of the damage is limited enough that I would have compensated readily - and that the ongoing nature of what I experienced between June at November was, ‘without doubt’, migraine related. When he diagnosed me, he assured me that MAV didn’t mean that I would suffer with dizziness for the rest of my days and that the biggest step was to stop the cycle.
I think I got to a point of not second guessing my condition anymore. It is a difficult condition to diagnose and a lot of over lapping conditions. I started to concentrate on getting my life to some sort of normalcy. Getting on a medication or a trial of meds to feel any improvement and try to focus on my anxiety from the condition.