GeorgeKoch
03-26-2009, 01:30 PM
I was just recently (Monday) diagnosed with migraine-associated vertigo, and I have a few questions about both the disorder itself and my particular experience with it.
Is this the right board for asking such questions?
George
Is this the right board for asking such questions?
George
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pamg6
03-26-2009, 01:36 PM
Hi George,
Sorry about the dx, but hope you are doing well. Yes, this is a good forum as well as going back to the "health Issues" section and scroll to 'Inner Ear Issues" alot of us started there because we have what is known as 'Silent Migraine"....no headaches. Alot of us were missed dx with VN or Labs which is Inner Ear related....so that is why a bunch of us gravitate to that area. I hope this helps!!
Pam 3
Sorry about the dx, but hope you are doing well. Yes, this is a good forum as well as going back to the "health Issues" section and scroll to 'Inner Ear Issues" alot of us started there because we have what is known as 'Silent Migraine"....no headaches. Alot of us were missed dx with VN or Labs which is Inner Ear related....so that is why a bunch of us gravitate to that area. I hope this helps!!
Pam 3
GeorgeKoch
03-26-2009, 03:29 PM
OK, a bit of info first:
I began having nonspinning dizziness (not vertigo, that is) on Jan. 22. Finally got to see Dr. Tim Hain on Monday, Mar. 23. He agreed that the VN diagnoses were wrong because, among other things, I and my family have a history of migraines, and none of the balance tests or eye tests he did indicated loss of vestibular function, balance, etc.
In the course of these ~9 weeks, I've had 2 or 3 "good days" (about once every 3 weeks) in which the dizziness is almost unnoticeable; I'll have head pain or headache instead.
The rest of the time, though, the dizziness is pretty much constant -- from shortly after the time I wake up to the time I go to sleep. (I sleep OK.)
I also actually enjoy (at times) driving and computer usage, because it can sometimes help me not notice the dizziness (not feel it). Other times, those two activities aren't so easy. I was even dragged off to a movie last night and wasn't feeling dizzy while I was watching the big screen.
So anyway, my question is whether any of this seems unusual for Migraine-Associated Vertigo. Some of my most difficult (dizzying) activities are just walking, yardwork, etc. I've been told that left untreated, MAV dizziness can last months or years.
Do you suppose (since my work involves extensive computer usage daily) maybe I've just acclimated over the years to screens and monitors, such that they don't bother me?
I can't pin down why the occasional rare day comes up when I feel almost normal (except for a headache). I'm told MAV dizziness is continuous. Mine is "nearly so" -- not episodic.
I'm going to stop talking since I'm rambling a bit. My guess, no one has a 100% "typical" case of MAV; there's probably always something a little different or unusual for each person who experiences it.
I began having nonspinning dizziness (not vertigo, that is) on Jan. 22. Finally got to see Dr. Tim Hain on Monday, Mar. 23. He agreed that the VN diagnoses were wrong because, among other things, I and my family have a history of migraines, and none of the balance tests or eye tests he did indicated loss of vestibular function, balance, etc.
In the course of these ~9 weeks, I've had 2 or 3 "good days" (about once every 3 weeks) in which the dizziness is almost unnoticeable; I'll have head pain or headache instead.
The rest of the time, though, the dizziness is pretty much constant -- from shortly after the time I wake up to the time I go to sleep. (I sleep OK.)
I also actually enjoy (at times) driving and computer usage, because it can sometimes help me not notice the dizziness (not feel it). Other times, those two activities aren't so easy. I was even dragged off to a movie last night and wasn't feeling dizzy while I was watching the big screen.
So anyway, my question is whether any of this seems unusual for Migraine-Associated Vertigo. Some of my most difficult (dizzying) activities are just walking, yardwork, etc. I've been told that left untreated, MAV dizziness can last months or years.
Do you suppose (since my work involves extensive computer usage daily) maybe I've just acclimated over the years to screens and monitors, such that they don't bother me?
I can't pin down why the occasional rare day comes up when I feel almost normal (except for a headache). I'm told MAV dizziness is continuous. Mine is "nearly so" -- not episodic.
I'm going to stop talking since I'm rambling a bit. My guess, no one has a 100% "typical" case of MAV; there's probably always something a little different or unusual for each person who experiences it.
pamg6
03-26-2009, 07:34 PM
Hi,
I wish I knew more, but I am thinking that the walking and yardwork involves moving and I know that we migraneurs can be/are motion sensative. I think a good place to start is to get the book "Heal Your Headache" by Dr. David Buchholz (yes, 2 h's!!!). This book is a good place to start as it goes over everything that has to do with migraine/silent migraine. He lists ALL symptoms, triggers (very important to learn what your personal triggers are) meds, food triggers etc. This book was one of the lifesavers for me when this all began for me almost 2 years ago. My sx were pretty much 24/7 except when sleeping, so it was really hard to figure out my personal triggers. Once my migraine preventatives began to quick in, I was better able to see what mine were. I will list them for you, so as to hopefully help you. I notice huge symptoms when the BAROMETRIC PRESSURE changes ie...storms rolling in etc., FLOURESCENT LIGHTING (which is everywhere!!! so I have to wear a visor to head off the lights), lots of NOISE,PEOPLE, ACTIVITY,STRESS,COMPUTER SCREENS....just to name a few!!!!! So really my life changed totally when this hit me, but I just had to learn a new normal!!!! Hang in there and let us know how you are doing.
Pam 3
I wish I knew more, but I am thinking that the walking and yardwork involves moving and I know that we migraneurs can be/are motion sensative. I think a good place to start is to get the book "Heal Your Headache" by Dr. David Buchholz (yes, 2 h's!!!). This book is a good place to start as it goes over everything that has to do with migraine/silent migraine. He lists ALL symptoms, triggers (very important to learn what your personal triggers are) meds, food triggers etc. This book was one of the lifesavers for me when this all began for me almost 2 years ago. My sx were pretty much 24/7 except when sleeping, so it was really hard to figure out my personal triggers. Once my migraine preventatives began to quick in, I was better able to see what mine were. I will list them for you, so as to hopefully help you. I notice huge symptoms when the BAROMETRIC PRESSURE changes ie...storms rolling in etc., FLOURESCENT LIGHTING (which is everywhere!!! so I have to wear a visor to head off the lights), lots of NOISE,PEOPLE, ACTIVITY,STRESS,COMPUTER SCREENS....just to name a few!!!!! So really my life changed totally when this hit me, but I just had to learn a new normal!!!! Hang in there and let us know how you are doing.
Pam 3
GeorgeKoch
03-26-2009, 09:27 PM
Thanks Pam.
Oddly, for the first time (well, with one exception), I began getting a stiff neck and a little bit of lower-back pain yesterday evening through today.
Probably stress!
The doctor did give verapamil to treat the MAV, and I've heard great things about it (the medicine, not the disorder. heh) and he's quite confident it'll work. I begin taking it tonight. (Unfortunately, it's supposed to take 2-4 weeks to do its thing.)
I'll look into that book, for sure. Thanks again.
Oddly, for the first time (well, with one exception), I began getting a stiff neck and a little bit of lower-back pain yesterday evening through today.
Probably stress!
The doctor did give verapamil to treat the MAV, and I've heard great things about it (the medicine, not the disorder. heh) and he's quite confident it'll work. I begin taking it tonight. (Unfortunately, it's supposed to take 2-4 weeks to do its thing.)
I'll look into that book, for sure. Thanks again.
pamg6
03-27-2009, 12:30 PM
Hi George,
Verapamil works well for me. It is an easy med to tolerate, no side effects, except possible constipation, so keep that in mind. One of the bummers when we feel so bad is having to wait for the meds to kick in!!!!! I think for me, that my neck issues was really the first sign of this Migraine Syndrome that I have. Dr Buchholz says that it is all related. But who knows, stress can do many crazy things.
Keep checking the boards for encouragement, usually lots of people chime in, and its nice to know we aren't alone with these wierd symptoms!!!:D
Pam 3
Verapamil works well for me. It is an easy med to tolerate, no side effects, except possible constipation, so keep that in mind. One of the bummers when we feel so bad is having to wait for the meds to kick in!!!!! I think for me, that my neck issues was really the first sign of this Migraine Syndrome that I have. Dr Buchholz says that it is all related. But who knows, stress can do many crazy things.
Keep checking the boards for encouragement, usually lots of people chime in, and its nice to know we aren't alone with these wierd symptoms!!!:D
Pam 3
GeorgeKoch
03-28-2009, 06:19 PM
By the way, Pam, just wanted to say I appreciate all of your information and support!
There are some great people on these boards. One guy called Scott helped point me in the direction of MAV. (I'm sure the doctor would've figured it out anyway, but it helped me put together info for myself and understand things more.)
Only thing I don't understand is why the doctor chose verapamil over Effexor, because the latter is supposed to be particularly good for visual hypersensitivity, which is part of my problem (like motion intolerance). However ... he's the expert, not me. So I trust he made what he felt the best decision.
I don't have a headache per se today, but it is odd because it feels like a teeny little vice is inside my forehead, clamping down and putting pressure on it. (Like if you take your forehead from the sides and try to squeeze it toward the center.)
There are some great people on these boards. One guy called Scott helped point me in the direction of MAV. (I'm sure the doctor would've figured it out anyway, but it helped me put together info for myself and understand things more.)
Only thing I don't understand is why the doctor chose verapamil over Effexor, because the latter is supposed to be particularly good for visual hypersensitivity, which is part of my problem (like motion intolerance). However ... he's the expert, not me. So I trust he made what he felt the best decision.
I don't have a headache per se today, but it is odd because it feels like a teeny little vice is inside my forehead, clamping down and putting pressure on it. (Like if you take your forehead from the sides and try to squeeze it toward the center.)
shaan84
07-11-2009, 07:22 AM
Hi George..
mine is a much similar case as that of yours..
What medications were u under and how are you now..?
Regards,
Shantanu.
mine is a much similar case as that of yours..
What medications were u under and how are you now..?
Regards,
Shantanu.
GeorgeKoch
07-11-2009, 09:10 PM
Hi George..
mine is a much similar case as that of yours..
What medications were u under and how are you now..?
Regards,
Shantanu.
The *MAV* is alive and kicking. It's doing fine. ME, MYSELF, I'm not so great.
First I was started on verapamil (aka Calan), a calcium-channel blocker usually used for high blood pressure. It didn't help, though didn't make it worse, either. Then they gave me venlafaxine (Effexor), an antidepressant that slightly helped with some of the "grocery store syndrome" (visual dependence) but overall made me MORE dizzy. AND, the withdrawal is hell and extremely long-lasting.
Many doctors, including mine, were thinking of going to Topamax (an anticonvulsant) next, but I said no way. I have yet to meet anyone who's been able to tolerate its side effects.
HOWEVER ... don't let my less-than-great experiences influence your opinion or decision about what to do. Many people have had success with the drugs I mentioned. Other people, like me, are not so lucky and will have to keep trying other stuff.
mine is a much similar case as that of yours..
What medications were u under and how are you now..?
Regards,
Shantanu.
The *MAV* is alive and kicking. It's doing fine. ME, MYSELF, I'm not so great.
First I was started on verapamil (aka Calan), a calcium-channel blocker usually used for high blood pressure. It didn't help, though didn't make it worse, either. Then they gave me venlafaxine (Effexor), an antidepressant that slightly helped with some of the "grocery store syndrome" (visual dependence) but overall made me MORE dizzy. AND, the withdrawal is hell and extremely long-lasting.
Many doctors, including mine, were thinking of going to Topamax (an anticonvulsant) next, but I said no way. I have yet to meet anyone who's been able to tolerate its side effects.
HOWEVER ... don't let my less-than-great experiences influence your opinion or decision about what to do. Many people have had success with the drugs I mentioned. Other people, like me, are not so lucky and will have to keep trying other stuff.
carot
11-18-2009, 04:43 PM
hiya i have migraine associated vertigo.and i have had it for 3 years.i am new to this board so carnt answer your question.