Just wondering if anyone else here has the mix. I mostly see just postings on the MAV related symptoms, meds ect. Was hoping to find some that do. Because along with the dizzy attacks. The meniere’s is taking my hearing. I have loud engine type sound non stop in my ears. It has also slowly killed my balance nerve in my right ear. When I have the ENG test, my right ear doesn’t respond at all. So between the mav and meniere’s I am dizzy or just off balance everyday. I have major dizzy spellls when the weather changes with storms, or I trip altitude, loud noise or music, and if I build up too much fluid around the nerves in the inner ear. Caffine and salt are a trigger too.
so if anyone has this too, would love to know and share stories of what we are going through as well.
According to the local group of ENT’s I have bilateral meniere’s. According to another ENT with higher creditionals, I don’t, and per the nuerologist he recomended I have MAV. My point is that from my experience on other boards, most people who say that they have both, actually have MAV only, and are diagnosed with both because the symptoms are so similar.
Don’t get me wrong here, I am not saying that you don’t. As a matter of fact, judging by the hearing loss, I would say that you probably do have meniere’s.
Beyond that, I think that most of us can relate to the off balance/dizzy everyday. Through migraine preventative medacations, I have been able to bring my dizzyness/off balance to short spells lasting less than a few hours. Before the meds, though I spent 18 months experiencing a 24/7 constant dizzy state. Like you, severe weather changes can cause dizzy spells. Personally, food wise, my triggers are artificial ingredients such as MSG or artificial sweetners.
I think they are all just guessing and we get the doc’s current favorite guess when we are diagnosed. I have a list of diagnoses a mile long, including one who diagnosed me with–get this–menopause. This was something we had all known for 6 years…I think he meant I was “hysterical” but that has gone out of fashion.
I was once sent to a psychologist for pain that turned out to be from a tumor. Remove the tumor, no more pain; remove the psychologist, and the urge to kick that doctor in the nads has not gone away. Perhaps I should go back for more treatment.
Thanks Brian. I have had many different opinions as well. finally when it went to both ears they switched from just meniere’s to the mix. thank you for your thoughts on it. sometimes you just feel alone, caught between the two illnesses.
and thank you Thornapple. I must of had some doctors that went to school with yours… :lol: I had one tell me to go to a shrink that I was a woman trying to work in a man’s world and couldn’t handle the stress. And yet another one that told me in the start of this(when I was 42) that my hearing loss was due to old age…sigh
I’m a “hybrid” case as well. MAV, Meniere’s, Cervicogenic Vertigo, and a Palatal Myoclonus.
Thankfully, my trajectory has been positive over the last 3 1/2 years. I watch my salt intake, still occasionally use the Meniett, and stay away from foods that trigger MAV. Physical therapy (not VRT) has helped me immensely.
As far as medication, I take valium at very low doses. A vial of 30 tablets will last me around 75-90 days, although I will probably increase the dosage when it gets cold here. Last year during the cold months, I was at 5mg per day for about 3 months. I use parsley capsules as a diuretic. I use 240mg of verapamil daily for MAV. Verapamil has helped a lot. I started on low dose effexor in July, and it has proven to be fairly effective for me. I started PT around the same time, and PT has been more responsible for the more recent improvements than effexor. Probably a 75/25 ratio.
Vitamins…1000mg of Vitamin C per day, a mega-dose multi-vitamin, and vinpocetine a few times per week.
To be sure, none of the medications or therapies leave me completely symptom free, but they have certainly helped in moving me forward. Currently running about 80 miles per month and doing 7,000 sit-ups per month as well. Needed assistance to walk at times when this first hit me in 2005. Couldn’t walk a mile for quite some time without taking a break due to balance issues…up to around the Fall of 2006. Lots and lots of appreciable and incremental improvement.
Light weight work in the gym. Some movements increase disequilibrium, so I have to take it easy in the gym.
Your name rolled off my fingers not a month ago when I was trying to remember who it was, you or Brian, who got worse during the cold - I was responding to Brian and I said, “or was it MSDXD?” So, it’s both of you! I’m not so Dopamaxed after all.
So PT really is helping you! I’ve heard so many stories pro and con about it. Can you say anything more? Is it something you do with a PT or on your own? If you’re saying it’s given you more relief than your preventatives that says a lot to me.
Aside from the Epley maneuver, i know nothing about PT.
Anyway, nice to see you and i’m glad you’re doing so well - you made a good move back a few back, hey?