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  • undiagnosed dizziness

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    Old 11-07-2016, 01:11 PM   #1
    henry718
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    Unhappy undiagnosed dizziness

    Hello.

    I am 27 year old male, I work out 5 days a week, I do not drink or do drugs in any fashion. I am a successful small business owner, and from the outside looking in, one would assume life is great in my neck of the woods. But unfortunately for the past year and a half, I have been suffering from issues related to dizziness. Specifically, lightheadedness, sensitivity to light, confusion, and difficulty concentrating on things visually. These feelings are exacerbated when I enter environments that have harsh lighting, are visually active (such as a super market), or when I have increased anxiety. They also range in severity and duration, for no apparent reason. I have been to numerous doctors and clinics during this time, including neurologists, ENTs, Sleep specialist, general practitioners, as well as Vestibular Specialists. I have received numerous testing as well, including MRIs and MRAs of the head and neck, VNG testing, EEGs, blood work, sonograms of my heart, kidneys and liver, stress tests and EKGs of the heart, as well as physical exams, but unfortunately we have not been able to come to a logical conclusion as to what has been causing these issues. The only diagnosable “problems” that has resulted from testing has been slight sleep apnea, cervical lordosis, as well as slightly abnormal readings from the VNG testing. From conferring with the numerous health professionals, I have seen, they have concluded that my issues most likely do not stem from these things they have found.
    The VNG testing resulted in a diagnosis or “low gains”, as my doctor eloquently described it, or Vestibular Hypofunction, but I do not suffer from the symptoms classically associated with this disorder. I have perfect balance, zero issues with actual “dizziness”, or the room spinning. I have also been going to physical therapy for the past 6 months to correct the cervical lordosis, which has abated zero of my symptoms. I have also been prescribed a low dose of an SSRI, Lexapro, which has helped minimally. The sleep apnea remains untreated.
    So, at this point, I feel as though I am still at square one. On paper, I am your average healthy adult, but this is far from the truth. Although one would assume an issue such as being “lightheaded” is rather benign, it has completely consumed not only my life, but that of my families as well. We have been unable over the past year and a half to decipher even the smallest part of this puzzle and I am beginning to lose hope that it will ever be corrected. The last straw was roughly two months ago when I took a weeklong trip to the Cleveland clinic (supposedly one of the gold standards in health care) Upon conclusion of my visit (after many more tests and conversations with many people) the only help they could provide me with was to take an SSRI to calm me down about the fact that there is something wrong with me, and no one can figure out what it is.
    I am writing this today in the hopes that someone, anyone, could shed some light on a situation such as this. Whether it be to go for more testing (and what those tests would be) support (if you’ve been through something similar) or actual answers as to what you think this may be. I am beginning to lose hope that I will ever figure this out, and I will forever be cursed to live life dizzy and uncomfortable. I wish more than anything to just be a “normal” guy and to have no fear or anxiety when I do “normal” things. I have the resources and means to seek out whatever avenue of treatment that you may think would be beneficial for someone in my situation, and I am desperate enough to try just about anything to get to the bottom of this. Life has become less about living, and more about struggling to make it through the day, and dealing with fear, anxiety and embarrassment or living with an un-diagnosable disorder. I’m hoping someone out there can point me in the right direction and I can once and for all get find a “cure”.

    If you believe you can lend a hand in anyway please do not hesitate

     
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    Old 11-14-2016, 09:52 PM   #2
    suzyisdizzy
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    Re: undiagnosed dizziness

    Hello, first off I am so sorry you are going through this. I have symptoms almost exactly as you do. I also had a number of tests that did not give any info on what was the problem.
    Through research I concluded my problem was related to migraine. I had migraines for most of my adult life. They were always more "aura" in nature than painful. I started taking beta blockers for migraine prevention and my dizziness improved. I'm not 100%, but I am about 98% on a good day and then sometimes I am not so good. But I did notice a big improvement after being on the beta blockers. The beta blockers will also help with your anxiety. So you can kind of kill two birds with one stone. The beta blocker I take is Metoprolol. I would look into that angle. Hope this info helps you!

     
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    Old 11-16-2016, 03:21 PM   #3
    gypsysoul1
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    Re: undiagnosed dizziness

    I can relate so much to you, I am a 30 year old healthy female and I have had this issue for four months now! I go back Friday to a new doctor since my doctor basically gave up on me and did not test me for everything.

    He is telling me its all anxiety related, but I really don't think so. I have nothing to tell you at the moment.

    This whole thing is taking over my life!!!!

    Last edited by Administrator; 11-25-2016 at 11:59 PM.

     
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    Old 11-24-2016, 06:37 PM   #4
    Mariner403
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    Re: undiagnosed dizziness

    Hi, Henry :-)

    I note that you don't describe your disorientation issues as "dizziness", but I can tell you from experience that general disequilibrium and associated feelings such as "wooliness" and "vertigo" are very hard to describe, and no single word seems to apply to the general symptomology of disequilibrium. Your symptoms simply don't work in a "check-a-box" system of medicine. Would I be right about that?

    My story, as briefly as I can. About six years ago I woke up and it was like being drunk, bouncing off door jambs, working my way from handhold to handhold. It was sudden! The imbalance was accompanied by a sense of "wooliness", but didn't fit the description of dizziness... no "room spinning around" or anything like that.

    I went to see my PC doc right away, and he sent to an ENT specialist. All kinds of tests produced no results. Next up was an MRI for a possible brain tumor or evidence of a mini-stroke. Again, nothing. Finally, a neurologist. She found peripheral neuropathy, but that didn't explain the disequilibrium. So finally, I just gave up and figure "I'll just have to live with this", and bought a cane, installed footlights all around the house, and so forth.

    If that sounds familiar, I may have some good news for you.

    A week ago, my wife talked me into finally trying out hearing aids for hearing loss. So she drove me to a place where hearing aids are sold.

    I've been wearing them for a week now, and MIRACULOUSY my imbalance - disequilibrium and associated "wooliness" and "fuzziness" is totally gone.

    I'm sure you know about crystals becoming "frozen" in the cochlear canal (in the ear) as a common cause of disequilibrium. The ENT supposedly tested for that, but as I said, gave me a clean bill of health in that regard.

    I now think he was wrong! These hearing aids are inserted deeply into the ear's auditory canal, almost to the eardrum. It takes some getting used to, but the improvement in hearing is excellent. That's beside the point, though.

    The old problem of correlation = causation hasn't escaped me, but the very MOMENT I started inserting these hearing aids, my disequilibrium and all associated symptoms disappeared... after six years of battling with it.

    My theory is that the hearing aid inserts - which are stiff and straight - somehow "stirred up" those cochlear crystals and got them moving normally again.

    You're only 27 and probably have no hearing problems (I'm 75!), but to me the correlation goes far beyond coincidence. Insertion of those hard, stiff inserts cured my disequilibrium issues. I now walk straight and normally, there's absolutely no sense of "vagueness", "wooliness", "fuzziness" or however each individual might describe the disorders. I know from experience what you're talking about.

    So my advice wouldn't be to shell out money as an "experiment", but rather to see an ENT doc and tell him my story. Misdiagnosis of cochlear crystal problems is very common, as I've come to learn during the past week.

    I hope this helps, and I have great confidence that it will.

    Best of luck,

    Frank

    Last edited by Administrator; 11-26-2016 at 12:03 AM.

     
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    Old 01-04-2017, 01:45 PM   #5
    NotCrazyAtAll
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    Re: undiagnosed dizziness

    Just wanted to suggest that there may be underlying causes for dizziness, such as low blood sugar, food allergies, and even things like heavy metal toxicity.

     
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    Old 01-04-2017, 03:50 PM   #6
    gypsysoul1
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    Re: undiagnosed dizziness

    Quote:
    Originally Posted by NotCrazyAtAll View Post
    Just wanted to suggest that there may be underlying causes for dizziness, such as low blood sugar, food allergies, and even things like heavy metal toxicity.
    When testing for metal, would this be for "normal" blood work or do you request this? Also, how would one get this? Like metal in your fillings for your teeth>

     
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    Old 01-06-2017, 10:25 AM   #7
    Kasey443
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    Re: undiagnosed dizziness

    Hi Henry, you have all the symptoms of a very treatable problem. I went through this exact same thing.
    Most doctors miss checking this as the source to this day, and it is very sad to see so many people suffering with this.
    Long story short, when you have a neck problem such as lordosis, ( and even if a person doesn't have a neck problem ) the muscles in the neck and upper back and shoulder blades can tense up, just from doing something out of the ordinary such as moving, lifting, or just plain stress.
    This causes knots in the muscles, and this in turn puts pressure on the blood vessels going to the brain causing the lightheadedness, the dizzy spells, confusion, memory problems, and a whole host of many other symptoms, all of which make a person feel like they are losing it. I have been there.
    The therapy I get to this day for these symptoms, ( whiplash over 11 years ago ) is by a physical therapist who does counter strain.
    This is a very gentle therapy, no exercises, that releases the knots and tension in the muscles, and this in turn takes the pressure off the blood vessels going to the brain that cause the symptoms.
    One simple way to check yourself is put one hand on the opposite shoulder blade and squeeze very firm. If these are tense, you will feel pain, pressure, and many times pressure that goes in to your head and face. Or have another person do a firm massage on your upper back putting pressure where you may feel knots. If any of this hurts and causes symptoms, this is the source of your symptoms.
    Please get to a physical therapist, this therapy works very quickly.
    I have had neurologists, orthos, GP's, miss this as the source of my problems for years, and some even said they didn't think that was causing my symptoms, but I knew because I had been to therapy for these exact symptoms.
    Only the spine center at Mayo asked me what worked for these symptoms, and sent me to PT.
    The therapist can explain why this happens to you, and how when you have overused these muscles, or are under stress, the symptoms can come back, so I still go occasionally. Good luck to you

     
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    Old 06-23-2017, 06:10 PM   #8
    aurora07
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    Re: undiagnosed dizziness

    Dear Kasey443,

    I have been having many of these symptoms as well, and I also had a whiplash injury about a year ago. I have had many tests and imaging done (MRI, MRA, EEG), but they found nothing. I sought out strain counterstrain based on reading forums like this one, and I found a PT who did it with me once, but I did not notice a huge difference. Do you know how long it took for the therapy to start helping?

     
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    Old 06-23-2017, 06:14 PM   #9
    aurora07
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    Re: undiagnosed dizziness

    Quote:
    Originally Posted by Kasey443 View Post
    Hi Henry, you have all the symptoms of a very treatable problem. I went through this exact same thing.
    Most doctors miss checking this as the source to this day, and it is very sad to see so many people suffering with this.
    Long story short, when you have a neck problem such as lordosis, ( and even if a person doesn't have a neck problem ) the muscles in the neck and upper back and shoulder blades can tense up, just from doing something out of the ordinary such as moving, lifting, or just plain stress.
    This causes knots in the muscles, and this in turn puts pressure on the blood vessels going to the brain causing the lightheadedness, the dizzy spells, confusion, memory problems, and a whole host of many other symptoms, all of which make a person feel like they are losing it. I have been there.
    The therapy I get to this day for these symptoms, ( whiplash over 11 years ago ) is by a physical therapist who does counter strain.
    This is a very gentle therapy, no exercises, that releases the knots and tension in the muscles, and this in turn takes the pressure off the blood vessels going to the brain that cause the symptoms.
    One simple way to check yourself is put one hand on the opposite shoulder blade and squeeze very firm. If these are tense, you will feel pain, pressure, and many times pressure that goes in to your head and face. Or have another person do a firm massage on your upper back putting pressure where you may feel knots. If any of this hurts and causes symptoms, this is the source of your symptoms.
    Please get to a physical therapist, this therapy works very quickly.
    I have had neurologists, orthos, GP's, miss this as the source of my problems for years, and some even said they didn't think that was causing my symptoms, but I knew because I had been to therapy for these exact symptoms.
    Only the spine center at Mayo asked me what worked for these symptoms, and sent me to PT.
    The therapist can explain why this happens to you, and how when you have overused these muscles, or are under stress, the symptoms can come back, so I still go occasionally. Good luck to you
    Dear Kasey443,

    I have been having many of these symptoms as well, and I also had a whiplash injury about a year ago. I have had many tests and imaging done (MRI, MRA, EEG), but they found nothing. I sought out strain counterstrain based on reading forums like this one, and I found a PT who did it with me once, but I did not notice a huge difference. Do you know how long it took for the therapy to start helping?

     
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    Old 06-29-2017, 03:25 PM   #10
    Kasey443
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    Re: undiagnosed dizziness

    Aurora, one treatment will not help. There are too many areas that cause the symptoms. Upper back, neck, and head.
    I also thought it would do nothing, but I went back anyway and it did help and my symptoms went away.
    You tell the therapist what your most bothersome symptom is, so they take care of that first, then they go to the other symptoms the next appointments.
    For example, if your most bothersome symptom is dizziness, the therapist needs to know this, and will work first on getting rid of the knots that cause them.
    Also ask to have the muscles in your back right inside the shoulder blades that stick out, checked, when these are bad they are hard as a rock, when pressure is put on them, they will bring on the symptoms full force, causing pressure in your head, dizziness etc., because these are major causes of symptoms in the head.
    We have numerous muscles that connect the back, the neck and head, and they can only take care of one area at a time, as there will be 2, 3 or 4 in one area ( ex. upper back ) that will take up your visit. The next visit another area, ex, the neck, will be worked on. Good luck to you

     
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    Old 07-07-2017, 12:20 PM   #11
    scificionado
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    Re: undiagnosed dizziness

    I had a problem with dizziness in the past; it was so bad I had to get a cart at the supermarket to help me walk around the store.
    I found that adding a lot of electrolytes to my daily diet helped. Magnesium, potassium, sodium, manganese. I first tried something that bikers use called Hammer Electrolytes; took a couple of those a day. When I was recently in the hospital (not for dizziness), the blood work found I was still low in potassium. They didn't test for sodium or magnesium. We're all probably low on minerals like these nowadays.

     
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    Old 07-08-2017, 12:31 PM   #12
    aurora07
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    Re: undiagnosed dizziness

    Quote:
    Originally Posted by Kasey443 View Post
    Aurora, one treatment will not help. There are too many areas that cause the symptoms. Upper back, neck, and head.
    I also thought it would do nothing, but I went back anyway and it did help and my symptoms went away.
    You tell the therapist what your most bothersome symptom is, so they take care of that first, then they go to the other symptoms the next appointments.
    For example, if your most bothersome symptom is dizziness, the therapist needs to know this, and will work first on getting rid of the knots that cause them.
    Also ask to have the muscles in your back right inside the shoulder blades that stick out, checked, when these are bad they are hard as a rock, when pressure is put on them, they will bring on the symptoms full force, causing pressure in your head, dizziness etc., because these are major causes of symptoms in the head.
    We have numerous muscles that connect the back, the neck and head, and they can only take care of one area at a time, as there will be 2, 3 or 4 in one area ( ex. upper back ) that will take up your visit. The next visit another area, ex, the neck, will be worked on. Good luck to you
    Dear Kasey443,

    Thank you for the encouraging reply. I really think this may be the source of my problem, because when I press on the muscles in my upper back, between my shoulder blades, I do feel worse. Unfortunately, I'm not sure my therapist really has seen this before. He is doing the strain counterstrain because I asked and says the tightness in my muscles might possibly be causing my symptoms, but he doesn't seem to know how to target the knots that cause specific symptoms and hasn't really seen this in patients before. I just had my second session, and I'm still not feeling better. How did you go about finding a therapist who knew about this condition? Should I try another method to get the knots out, such as deep tissue massage?

     
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    Old 02-25-2019, 04:40 PM   #13
    Dan 87
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    Re: undiagnosed dizziness

    Henry, did you ever find a resolution for your dizziness symptoms?

     
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