So I've been dealing with vestibular migraines for a decade. Only I didn't find out they were vestibular migraines until about three months ago. It's gotten so bad to the point that I have blackouts, vision loss, and vertigo. I also survived two massive heart attacks this year and I'm only 33. I'm at the point where I don't want to live anymore and am so broken I can't even leave the house let alone my bed. I've tried everything.
Was this gentleman already on a blood pressure medication. If i take propanolol in a much smaller dose 40mg my heart rate gets very low 40 to 45 bpm. He's on over 100 mg. Wouldn't that slows his heart rate too much? Im asking because i have menieres disease have been prescribed propanol for anxiety and high blood pressure and it did seem to help the menieres some.
I've been trying to learn from you, everything I can about vestibular disorders b/c I'm seeing an ENT and I'm hoping to help him help me. I have been suffering, for almost a year, with low frequency tinnitus that sounds like an engine, and at times it roars, but even worse, the floor in my home feels like it is vibrating: any part of my body that touches the floor or that is touching something that touches the floor, like the sofa, feels the floor vibrating. I have scoured the internet trying to find others with a similar experience and to date have only found one person whose symptoms were almost identical to mine. She said she suffered 10 years with the engine noise and the vibrations, and one day it all disappeared. She has no idea why. She said they moved, that is the only thing that correlates to the symptoms disappearing. Like my husband, her husband could not feel the vibrations nor hear the engine rumble. Which makes me think the sound and vibrations are not external. YET, when I pick my feet up off the floor I feel no vibrations in my feet. When I stand up from sitting I stop feeling vibrations in my buttocks. My ENT believes that the vibrations must be external. BUT, my husband can't feel them, nor can my adult children who have visited when I can feel the vibrations. Initially I was convinced they were externally produced b/c I live on a bluff over a river that has a sand mine operation, plus there are water pumps that supply water to my county in TN. But I changed my mind when I began noticing the symptoms when I was away from home...not all of the time, but once in awhile. I noticed them in my ENT's office, he could feel nothing nor could his assistant. Of note, when I am riding in a car, the symptoms disappear instantly which makes me think I have a vestibular disorder. I had a VNG test and am waiting for the results of that. The roaring/engine idle seems to be common among tinnitus sufferers, but the vibrations are not. Or, if they are, none are mentioning them. They affect the quality of my life to the point of misery. I refuse to accept that there is no explanation for this. My ENT is making a real effort to help me vs saying I'll have to live with it and I am thankful for that. IF you could offer any input concerning the vibrations I'd be extremely thankful.
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@@nmjime5560 Thank you so much for your input. Peripheral Nephropathy is something I can look into...I had chicken pox as a child and I have taken some of the floroquinolones b/c of a penicillin allergy for diverticulitis and b/c of a dental implant that was infected right after placement...... As far as B12, I have taken a supplement for several years now b/c I was over 50, and tired all the time and I continue b/c the B12 gives me energy that I do not have when I don't take it.... I do have digestive issues (IBS) and tend to poor absorption, as well as low iron in the past, and ongoing vitamin D deficiency (in the low teens) which will not stay up in spite of several years of treatment with high dose D2. I finally started taking D3 but can't tolerate more than 1,000 IU's daily...the vit D issue led to secondary hyperparathyroidism with elevated levels of PTH... I have no idea why but my PTH normalized...I'm lactose intolerant and have to avoid dairy yet my calcium levels were in the high 10's, but now they are in the nines which is normal for my age.. Last check up my ferritin levels were high, 387, and I have no idea why, my doctor didn't address it at the time the lab results were returned to him, his nurse informed me of the results, but I do plan on asking him about the elevated ferritin b/c I don't take iron supplements and I only eat beef (organic) one a week generally. I did wonder about hemochromatosis b/c of that..., also I have wondered about hasimotos due to other symptoms that fit that diagnosis, but my tsh is normal and my doctors refuse to test for thyroid antibodies. I have recently lost 15 pounds over a period of several months b/c my food cravings went away and my appetite shrunk. I'm not sickly, I do eat and I do get hungry, but am no longer ravenous all the time. It perplexes me and the interesting thing is I feel better now than I did in my 20's, 30's and 40's when I had chronic fatigue and migraines....what is really odd about the vibrations I experience, is this: it is not every day and there seems to be a pattern, but I can't connect anything to diet or stress. I am a cancer survivor too, 30 years now and even thought about metastasis and should prob have a brain scan, but I think if it were due to a tumor in the brain it would be progressively getting worse over time..it's not...crazy I know.
@@nmjime5560 Thank you...I haven't read up on SFN or PN but will...interesting that you and I have similar issues...I believe I had vestibular migraines b/c of the progression over 3/4 decades of symptoms and diagnosis, based on info I got from a vidoe Dr. Teixiso did on the subject. My symptoms were classic. But my VNG test was normal. fyi, the vibrations I feel are not internal, they are external..I only feel them if I'm touching the floor/ground...if I lift my foot the sensation stops, I did briefly experience internal vibrations twice, and they were nothing like the external vibrations I feel. Today, I am experiencing no vibrations and it's common on Fridays that I don't, which is weird. I thought it might be due to living near a sand mining operation on the river, but we moved 10 days ago and I'm still feeling vibrations so I believe it has to be me/my body responsible for it, not some external force.
I was told by my neuro-otologist that often patients are able to go off meds after 6-12 months of taking them and live normally. Not sure why, but maybe the brain can "reset" itself. But for a lot of people it seems to be a long term thing.
