Hi all.....ok so I got up at 4:30am yesterday to leave the house for 5am.....rode in the car for 3 1/2 hours....registered at Mass Eye and Ear and went off to the 6th floor for my vestibular testing....they strapped electrodes all over my face and had me sit in a chair and follow a red laser light.....then they took these vertical bars projected on the wall and made them spin in front of me which made me ill and feel like my chair was whipping around the room....then they filled little balloons filled with hot and then cold water and filled my ear and omg did i spin!! I was more dizzy than i have EVER been..... it was terrible! Then they took me into another room and strapped me into a chair like an astronaut and strapped my feet in and my head as well.....they dropped the circus tent like drape shut off all the lights and spun me around in the dark....that actually wasnt as bad as i thought it would be....pulled off electrodes and sent me to the 2nd floor to meet the specialist....they did a few neurological tests and decided I have no vestibular loss and it is migraine associated vertigo and to stick to the diet and conitnue to aggressively up my meds and someday i just might be well.....then we went to lunch at the cafeteria before my audiograms.....I had a common hearing tests then had a balance hearing test which basically really hurt my neck....then back to the specialist for the results...once again no vestibular loss so it is definatly migraine....then the 3 1/2 hour ride home.....so a looooong tiring day and feeling crappy today think i am getting a cold on top of everything else and going to try to up my meds for the first time on friday so it will be at least a week befpre the dry mouth and severe grogginess wears off.....just wanted to update everyone...please wish me well and pray that I can knock this thing out and get my health and life back......i probably wont be on much for a while so call instead
Good to know you have a proper dx and it was confirmed you have MAV. I guess for now all you can do is keep at the meds and if these ones fail move onto something different like Effexor. The advice given by Adleman in NC is to boost nori to a dose that you find acceptable – in other words if it starts to make you feel lethargic and doped out all day, the dose is too high and you'll need to either dump it or add something else.
It seems that so many physicians simply perform a battery of vestibular tests (optokinetic drum tests, caloric irrigations, pursuit and saccadic testing, etc.) and inform the patient that the vestibular system is working properly. In fact, most of the time they are correct and your vestibular sensory organs in your ear are sending messages normally to your brain. The problem there in lies in the way the brain receives the signals and direct your body to compensate for them. Rather than thinking about it pathology in the vestibular system producing dizziness why not think about all the things that must work properly for an individual to feel stable. For instance, you must have a stable heart that beats normally without arrhythmia or valvular dysfunction to deliver maximum blood to the brain. You also need to be free of organic disease in the brain (vascular abnormalities such as arteriovenous malformation, multiple sclerosis, tumors/cancer), you must have appropriate visual integration from your eyes and brain, you need proprioception to the spinal column from the neurological receptors of your body to tell your brain where you are in space, you need normal glucose concentrations in your blood, you need normal oxygen carrying capacity at the cellular level, healthy lungs, etc. Of course the most common cause of dizziness is medication!! Many people need neurological retraining of the central nervous system that an increase in medication does not address. It is ridiculously common for Mass Eye and Ear to dx you with Migraine associated vertigo but unfortunately their diagnosis is one of elimination rather than critical evaluation. What’s even more ironic is that the testing that they performed most likely held the key to understanding and treating your disorder but unfortunately there was no physician available to observe and understand your reaction to the tests in real time. The tests were done by a tech with no understanding of the integration of the intricate vestibular and other central nervous systems. You simply went upstairs where the “specialist” who looked at some ink on a paper and decided that the trace recordings were not indicative of vestibular disease. What a shame! Perhaps the tests were not equal in activity from side to side, perhaps there were subtle overshoots of your eyes, perhaps you pursuits were asymmetrical? In fact they may have all been within normal limits but not equal leaving you ill equipped to deal with your environment. What tests were performed to reach the diagnosis of migraine? Of course, none. You were sent home like countless others to take more meds. What is the method of action of the meds? Most likely meclizine which is glorified valium that actually is a depressant to the vestibular system. Seems a shame to take more drugs to numb your vestibular system when it is not the problem doesn’t it? In fact if you are ever going to recover and teach your brain to cope, do you think that depressing your healthy vestibular system makes sense?
Well not sure what else there is really to do.....you do vestibular testing to see if it is inner ear and if i have normal test results that say i have NO vestibular loss should i not believe that.....i waited a long time for a professional opinion and i am going to follow it.....other than that i cant spend all my time and energy ignoring what the doctors tell me and not treating what my problem is and be this way forever.....i have to trust the dr's opinion as i have nothing to tell me otherwise
Just stick with the migraine dx and try the various meds until you get a result. I think they know what they're talking about at Mass Eye and Ear. I'm doing a Migraine Program thing at the moment. If it works I'll be letting people know and maybe you can think about this route down the line if it proves to clean this mess up for me.
Good to know you have a proper dx and it was confirmed you have MAV. I guess for now all you can do is keep at the meds and if these ones fail move onto something different like Effexor. The advice given by Adleman in NC is to boost nori to a dose that you find acceptable – in other words if it starts to make you feel lethargic and doped out all day, the dose is too high and you'll need to either dump it or add something else.
Best ... Scott
hey scott! i think you are dead on iwth this about the nori. i had to do just this. i got to 40mg and was sooo doped out and lethargic that i couldn't concentrate on little tasks without yawning the whole time. so i finally dumped it last week!! yay!! now on to the neurontin...finally lol.
Dizzy--i'm glad you go an official diagnosis from these specialists. keep on the med path and see what it does for you. it could be your knight in shining armor!! best of luck! hang in there