What is causing an increase in dizziness over the past year…a new revelation!

11 Jun

dizziness (Photo credit: iamnelaas)

I’m still figuring out symptoms and trying to problem solve nearly 21 years later.  So what is the cause of dizziness anyway? I’m sharing this level of frustration so others can see how difficult it is with any individual dealing with traumatic brain injury.

TBI has a host of symptoms that are difficult to live with, let alone figure out what is causing what. It’s up to the individual to figure it out.  It’s such a complex injury that even the healthcare professionals can only guess.  You are responsible. It doesn’t matter if you have an old TBI or new.  You are expected to be precise in describing your symptoms.  That’s hard for anyone to describe clear and concisely without a TBI. It is expected of every individual, no exceptions. This experience is similar with all those dealing with chronic illnesses and injuries of any sort.

I have been trying to figure out why my dizziness has returned to an unbearable level.  It seems like for the past year I’ve been taking on and off my glasses and nothing had improved.  It seemed like when I had my glasses on for a short time the clarity of my vision would improve.  I’m not certain at what time things got worse.  This is what I do know and I’m hoping if there are others in this situation it will help.

A few years back I started wearing contact lens in one eye, also known as mono-vision.  My left eye would see close up and my right eye could see distant.  As I write this I am just putting all this together to problem solve my own dizziness issues.  Since, I can’t think this through it’s taken me some time to put all the pieces of the puzzle together.  Hence, I would never think or expect even the best physicians to put this together.

This is a lesson for others to understand how difficult and unique brain injuries are, and the only person able to solve most of the problems will be the person with the brain injury.  So if you are close to a loved one with a brain injury it is possible you can help problem solve over time.  Unfortunately, the one that needs to problem solve is the one with the brain injury.  Because of this, the education and true sense of understanding among healthcare professionals may always be limited.

I mentioned this level of dizziness to all my healthcare providers, and even suggested maybe an inner-ear infection.  I was told that would be the most common problem but in my case it’s probably related to autonomic dysfunction.  Now, I do know this is a partial blame for the dizziness and I have lived with that since the injury.

So, how do you explain a worsening of vision and dizziness symptoms when you know the autonomic nervous system has been relatively stable.  When one has a number of triggers of dizziness it is very difficult to pin-point the problem.  So, I’m contemplating what the problem is and I need to find a solution soon.  Is it my vision, vertical heterophoria? Is it my blood pressure?  Is it my autonomic instability?  Is it insufficiency?  On and on.  It’s simply a merry go-round!  One I’d rather get off, then stay on!

My Florinef was increased to a level that they’d rather have high blood pressure then low blood pressure. I understand the brain needs the blood flow so I certainly did not think that was the cause in this dizziness.

I was about ready to seek further attention to this matter when I finally resolved the problem.  I knew something needed to change.  I’ve had several falls within the past year leading to significant injuries and don’t want to risk my physical health anymore.  I’ve limited driving.  I wake up and within an hour I’m exhausted.  None of this makes any sense…then the light bulb finally went off.

Contact Lens-001

I finally realized years ago, I began wearing a contact in one eye and that eliminated most of my dizziness. So last year I was diagnosed with Vertical Heterorphoria.  I was prescribed prism lens which seemed to work…temporarily that is!  I’ve come to my own conclusion as of yesterday.  My husband says I’ve talked about the contacts in the past, but then I never think of it again.  I finally put a contact in my left eye and wow…the dizziness is gone!  At least most of it! Thank goodness!

It’s my opinion that my brain was easily trained to wear the mono-vision contacts because I had vertical heterophoria, which is a misalignment of the vision field after head injury.  Both eyes do not see on the exact planes, hence causing double vision, blurred vision, and dizziness.  This is an exhaustive cognitive problem.  You struggle for clarity and tire mentally easy.

Usually when one attempts to retrain the brain to see mono-vision there is a period of dizziness.  My sister attempted to do it at one point, but she said it caused profound dizziness and could not do it. She never complains, so you can only imagine how difficult it must be.  On the other hand, I was so use to dizziness it didn’t seem like a problem to me and my brain trained easily.  It’s most likely that my eyes were not seeing on the same level to prior to wearing the contact.

In conclusion, I believe that when my vertical heterophoria was being treated with prisms lens my brain could not retrain back to seeing out of both eyes…hence causing the severe dizziness.  I blamed it on the scratches in the lens within the visual fields I now have from falling flat on my face with both pair of glasses.  I blamed it on a number of things.  I’m hoping this observation of my problem can help others solve theirs.

I’m not sure that I have the solution, but in the meantime I think I might be on to something that could be helpful for research in the future.  All I can do is add what is happening and what I finally figure out to help others. I’m simply mentioning this post because it’s the way people with traumatic brain injury need to problem solve, and unfortunately most don’t have that ability.  I do…it can be days, months or years to figure things out.  I’m just happy I’ve found a solution…at least part of a solution that’s working for me!

Now, it has taken me over a year to come to this conclusion and problem solve…but better late then never.  Ideally, the prism lens should work.  It could be possible that the falls within the past year could have also changed the misalignment in visual fields.  What I do know is this: My one contact for close-up and no lens for the right eye is the best combination for my vision at this time. At least for today! My eye appointment isn’t for another 6 weeks, and everyone knows what that is like.  A lot can change in the meantime.

I’m so relieved at the moment, I just hope this isn’t a false sense of euphoria!  I’m sharing this experience anyway.

So, are you still having difficulty with your vision…double, blurred, clarity, dizziness, nausea?  These are all signs that something was damaged within the brain that affects your vision.  In the case with others with chronic illnesses and injuries they are all symptoms of other problems as well. It is possible that it is treatable.  On the other hand, they may all be very different problems or combination of problems. In my case, they are all combinations of problems within the brain making it even more difficult to treat and diagnose.

A100319_MAMC_TBI 1

A100319_MAMC_TBI 1 (Photo credit: Joint Base Lewis McChord)

I’m putting this most recent observation out now so others can help try to problem solve for themselves.  Ultimately, it is up to the patient to figure things out.  Brain injury and so many other health issues are so complex.  I wish I tried to figure out these things for myself instead of expecting others to understand and assume they knew what they were doing.  Even with the best intentions, only you know what is going on and what will work.

The hardest part with head injury, it can take years to figure things out…simply because all the connections in the brain don’t work.  You can say this and that…but it can take a very long time to problem solve.  My husband said he believes I’ve mentioned at least 100 times within the past year about the contacts but I kept loosing that thought and never thinking about it again, until I would mention it again.  I never got past that point until yesterday when I thought to try a contact.

In spite of TBI, eventually I figure things out.  Now if your life depended on quick thinking, it might or might not work.  Eventually, I would get it…but it might be too late!  This is a good reason healthcare professionals should not be dealing with direct patient care following TBI.  It could be your life!


Tags: , ,

21 responses to “What is causing an increase in dizziness over the past year…a new revelation!

  1. meesher

    June 11, 2012 at 5:57 am

    I want a tee shirt that says, all over my ample bosom, “Head Injured. NOT STUPID.”
    And, have I been here before? Even though I CAN spell, I cannot remember where my fingers have taken me. And they are connected to “me” or what I used to think was “me.”

    • brain injury self rehabilitation (BISR)

      June 11, 2012 at 7:47 am

      What a great slogan for a tee shirt! It’s amazing that people believe and treat us as though we are stupid! What they don’t realize we eventually figure things out… we are just as intelligent as we always have been. This treatment just adds to the level of frustration. Unfortunately, it’s not just strangers that treat us this way. What hurts the most is when people we know or supposedly loved treat us this way! It’s hard enough dealing with changes of self every single day, let alone all the put-downs! I love have you say your fingers are attached but you can’t remember where they’ve taken you. How true of a statement that is. I’m sure we can identify.

      • meesher

        June 11, 2012 at 8:28 am

        A head injured woman walks into a bank: “Hi, do you know me?” “My name is Mary Smith.” “Heck yes, we alllllll know you, Mary. Giggle Giggle giggle. At my doctor’s office, after 9 years of asking the same womEn this same Q, one of them takes me gently aside and whispers: Mary, does your head injury ever affect your life?”

      • brain injury self rehabilitation (BISR)

        June 12, 2012 at 8:13 am

        This is totally inappropriate communication and questions. Ignorance is my reply, and obviously these people still don’t understand head injury even after 9 years of knowing someone. How sad this is, but a common scenario! Some people just never learn, and it’s not the TBI community.

      • meesher

        June 12, 2012 at 11:12 am

        What is was trying for when I told you about “walking into a bank” was along the lines of “A priest, a rabbi and an Imam walk into a bar….” But in my case, I ended with the doctor’s office. THAT doctor (and we live about an hour from U.C. Davis) is my best bet: He is a Jesus freak (I know, I may have offended you), but his ties ALWAYS have either the sermon on the mount, loaves and fishes, Mary and Joseph on a Donkey (XMAS!) or The Lat Supper (he has 3 kids who apparently craft his tie motifs as a hobby). This would not be SO bad if, on my initial patient info form, he had not demanded of ME (a woman who had a hysto at age 45) “how many abortions have you had?”. Pro life or pro choice, the question was totally out there and inappropriate for someone my age, who is not having any more kids (hysto) (and I only “had” hub’s now grown kids, anyway). Not a good idea to have had kids when I was 38, recently head injured and, at that time, totally OUT THERE!
        Per the Tee shirts, I know a place in Canada that makes multiples (I’m sure there is one closer) of tee shirts, with the same words in different colors. I’d like to find a way to cover costs and then basically give them away to anyone who, like me, feels “Brain Injured, NOT STUPID”. And I also developed epilepsy later. NO ONE has ever even read that stupid medic alert bracelet I wore for 8 or so years: my allergies, my epilepsy meds, my intolerance to shell fish, who to call, etc .I was a Jane Doe even when MY HUSBAND sent the damn ambulance AWAY from our “local hospital” and TO U.C. Davis. Maybe I should consider my first tattoo? (NO)
        Yet another point: all hospitals are NOT created “equal”. People with brain trauma are way more likely to end up in yet another hospital: maybe we should paint our CARS with a message of TAKE ME TO HOSPITAL XYZ rather than any ER. Or our fingernails. Something has to be done: places that might stop bleeding and stitch us up, are not, most certainly, neurological centers.

      • brain injury self rehabilitation (BISR)

        June 13, 2012 at 7:16 am

        The tolerance and even abuse that brain injured survivors deal with is incomprehensible. The average individual is more acceptable of TBI than the healthcare providers, and that’s not saying much. Questions and comments are often invasive and poke fun at many levels of the TBI client. One becomes the brunt of all jokes, and that should never be acceptable.

        “Brain injured, NOT STUPID” is a great idea for Tee Shirts! I’ll check around on that.

        You are right that no one really checks Medical Alert bracelets. I use mine mainly for my own organization with the flash drive. It keeps it easier to print off for hard copy with my medical information. I plan to volunteer and educate, possibly when CPR comes up yearly for medical alert bracelets & brain injury.

        I just ended physical therapy for an injury simply because my intolerance to noise, lights, distractions etc. Even though the therapist was good, the other issues with brain injury are harder to deal with then the knee injury itself. The closest anyone can get to understanding is to deal with someone who understands neurological conditions.

  2. Three Well Beings

    June 13, 2012 at 11:55 am

    I cannot imagine how frustrating it would be to have glimmers of insight, thought, recognition and cause/consequence and then lose them just as quickly as they come! The t-shirt slogan “Brain injured, NOT STUPID” is a fabulous marketing idea! I’d surely buy one for my friend. I spoke with her this morning and she gave me quite a series of frustrations related to her TBI and mentioned–again 🙂 –how much noise upsets her. I am amazed at the clarity with which you break down how many complexities there are for you just to stay engaged in daily living. You really are a wonder to me! And a resource…Debra

    • brain injury self rehabilitation (BISR)

      June 13, 2012 at 5:53 pm

      Debra, Thank you for the compliments. How is your friend doing on a daily basis? Edie

    • meesher

      June 14, 2012 at 12:29 am

      I was sent an email, from a human I know in San Francisco, re-directing me to a website in WDC, with a host of products (tee shirts, the dreaded hoodies, sweat shirts, jammies, diapers, lunch totes, etc), with thousands of “sayings” printed on them. It took me HOURS of mystifying “surfing” just to “watch” all their money making ideas, pithy though they were, pass past my eye balls, which were hurt by the bright lights in the site. For me, I cannot tolerate fluorescent lighting at all. Speling?) Florousece..??? Now, only Nordstrom has them in their stores, so that all of OUR lovely complexions appear as lovely as I am sure we all would like to believe we still think they are ARE. Still, I shop for what I need, from a catalogue, or online. Easier on MY knees, which I, also, stopped treating, because of the noise, lights, etc. Next, I want to find the “silent keyboard”. I know it exists.
      We are a large group, surely we could find SOME WAY to earn a tiddy bit of $$$ in the wee hours, where I can be mos often found, online.

      • brain injury self rehabilitation (BISR)

        June 14, 2012 at 5:12 pm

        I’m interested to find out more specifics about the t-shirt & other ideas & what you found out. While in college our sold sweats and stuff to help support our senior graduation party from the university and did well.

      • meesher

        June 15, 2012 at 10:54 am

        Dear nurse person: In the 90s, when I was lucid, I used ivillage to start an online group for women. It soon became 30 strong, women in the U.S, and I do not remember if they still worked outside the home. But when one of them started calling “us” H.A.G.S. (in affection) I thought “Oh” That would make a nifty key chain key fob like “thingie”. I found a silver smith in one state, I planned to use a woman in Florida, (I live in California) as the recipient of the silver circles, with an image of an old pirate ship under sail. I did that so that at least SOME of the women would see that I was not personally trying to make money off of them. Then, to my horror, that Florida woman was at home with her then 3 year old, and allowing her almost hub to innapropriately touch her 3 year old. Then I tracked down her parents in Wasington state, who were unaware . The FLA cops started phoning the grandparents. THEN the member of my posting board started talking to each other via P.M. and I found that the almost hub HATED children, and the afore-mentioned man gave up his email addy to the cops who also gave it to me. I found out from HIM, that he planned to dump the pregnant woman, and THEN the FLA cops HIRED HER as some kind of receptionist, which left her 3 year old home with the hub-like person. I created a file about his emails to me. I sent it to a nice man at the cop’s station, who told me he could not do anything until they caught the hub like person “in the act.” Since I could not fly there and kidnap the child, I just unplugged the whole darn system, after having found out that the grandparents had gained custody of the 3 year old (then 4) and I certainly could not do diddley about the new child, still in utero. In short, I could do no more to help those children. Ultimately, the silver (when silver was drop dead cheap) fobs are still in my possession.
        Point? Even re-directing women in here, or men, tends to make them think we are hucksters trying to take what ever money they might have. I wanted to make a “club” for head injured women, who were stuck at home, and who had health issues. I did that. But the send-us-your-money deal was thought (I heard from a woman in AZ) as a total criminal act, and HER hub told her that it was plain madness to send ME a lousy ten bucks for the silver charm. I did sell them,(at cost) to some of the members, but then the child abuse, neglect, the child porn in that house, became more important to me than creating a club for head trauma/epis/brain injured women who NEEDED people to “talk” to about every day things.
        If I/we invested in any lady-sized Tee shirts, hoodies, bumper stickers tote bags, etc, I cannot see that someone, somewhere, would not think WE were getting some kind of kickback. I am Send back ideas to me, at that address, please. I am not, generally, awake in the morning hours. I sleep when it is daylight usually, but I am awake in my time zone between 4-ish to 8ish and then I get back online (or answer the phone) bewteen 10pm to 2am, GMT minus 8–factoring in daylight savings time. (one hour this way or that). I will send YOU my cell number–the land line would awaken my hub and THAT IS BAD. He konks out about 8pm. I can have some Ts designed with a logo or two, but all cotton tee shirts are rather expensive, given that some of your readers are living hand to mouth on SSD.
        PEACE is Patriotic.


      • brain injury self rehabilitation (BISR)

        June 15, 2012 at 9:54 pm

        It really sounds like a horrific situation with the child and unborn baby. You were really caught up in some serious stuff, but you did what was right. You didn’t just sit back…you took action! It’s people like you that make this world a safer place. You certainly have your priorities straight. I would also drop anything else, if it comes to a child’s safety.

        I will email to get further information on the t=shirt ideas.

  3. meesher

    June 15, 2012 at 11:04 pm

    Thx, sheesh! The fingers who did all that typing were asleep at the wheel, however, the facts are the same. One thing my head injury/epilepsy has done for/to me is that I no longer have the ability to tell even a white lie. Darn.

    • brain injury self rehabilitation (BISR)

      June 16, 2012 at 5:41 am

      I laughed at the fact you say “no longer have the ability to tell even a while lie”. It’s my experience as well following brain injury. It’s hard enough to keep everything straight, could you imagine how much more complicated things would be if lying was another factor? So, for TBI survivors it’s a great thing…but this isn’t the honest world we’d love it to be! Have you checked out The author is a nurse also with a brain injury. She and her son are living a journey that many TBI survivors are traveling. Vulnerability is the word for TBI!

  4. Madelyn Griffith-Haynie, MCC, SCAC

    July 30, 2012 at 12:13 am

    Another GREAT article – I have been struggling through WordPress quirks, attempting to post the next part of the TBI/ADD overlap content. When I can make it happen, this article will be linked to that section. (I’ll ping you) – I’ll also refer to it as a great example of what I call “sherlocking” (underscoring the fact that most docs don’t – they do what they’ve been trained to do, and see only what they already know about.

    SLIGHTLY off-topic (with apologies)

    Even though you are frustrated by the lack of linking re: contacts/dizziness (i.e., follow-through to completion), I am amazed at the “comment follow-through” in the TBI community.

    ADDers are generally pretty lousy with follow through in *any* environment (tomorrow never comes) – so those of us who coach (EVEN those of us who train coaches) find we spend a lot of time backfilling that one skill. Our training struggle is how to teach follow-through when they don’t follow through on showing up for the learning — without making them wrong or shutting them down!

    For example: Students in the current 8-month ADD and the Spirit Coach training (most have ADD themselves) have been **assigned** certain articles on my blog as homework, requested to leave a comment (any brief something in the comments section, simply to indicate completion, so WE can track who knows what).

    Sheesh! They’re not being graded (on homework or anything), but most of them would be in scholastic danger if they were! Some haven’t made time for the reading, but others don’t seem to be able to put the capper on the assignment (“Oh yeah, I meant to go back to do that – I did read it” — totally missing that part of the assignment was designed to strengthen follow-through habits and to increase the likelihood of retention of the material). Ditto making time to listen to podcasts of classes they miss, etc.

    From what I’m seeing here (and elsewhere) in the TBI community, ADD Coaches and trainers might need to dedicate more of our time to reading and responding to long comments, but it doesn’t seem like we’d have to install the CONCEPT of the importance of follow-through and feedback, however difficult at first, to develop the follow-through habit — or that asking the questions is part 1 – reading (or listening to) the answer is the part that allows you to change your life. BOTH are needed, along with a feedback loop, but my community doesn’t really seem to “grok” that inately – it must be learned, usually taught (and some never get it).

    I’m guessing that the fact that follow-through systems and habits are more likely to have been installed before your injuries might explain at least part of the reason for the differences, but I’d love to know how the TBI community itself explains it.

    Madelyn Griffith-Haynie, CMC, SCAC, MCC
    – cofounder of the ADD Coaching field –
    (blogging at ADDandSoMuchMore and ADDerWorld – dot com!)
    “It takes a village to educate a world!”

    • brain injury self rehabilitation (BISR)

      July 31, 2012 at 9:03 am

      Wow! This is a concept I’ve pondered over the last day. I’ve also discussed this with my daughter who was born with Cerebral Palsy and has a totally different perspective on life and learning.

      It’s my personal experience with brain injury and my daughter’s that I find very different. I’ve had the opportunity to develop strategies prior to injury and it does help with recovery. I see the struggles as very different. I struggle because I once knew how to do it, and I’m extremely persistent and push myself to a level of frustration that’s hard to explain. Whereas, my daughter never had that experience so she never has a comparison of the “before injury” and “after injury”. Unfortunately, I wish she had the experience and I would have given anything to change that.

      A personal acceptance of who we are is very different. On a personal level, she has dealt with bullying all her life. This is something I did not encounter on a personal level.

      My organization skills and executive functioning were in place prior to injury, so my determination to find that again is quite a struggle. I think prioritizing and following through with tasks are equally difficult, but in comparison to those who never had those skills in place before I see this as being a significant problem and possibly quite different than those who have traumatic brain injury.

      It’s my experience that I spend every day organizing and trying to find the best method that works for me. I had someone look at my computer about a year ago and they said “it was the worse computer they’ve ever seen”. Well, I wasn’t surprised…but that is a look into my brain since my computer is how I compensate. I think if I had someone helping me with organization and getting it done, I would do well. In the past I have had a friend helping me and I’ve made significant progress…but that’s extremely time consuming for others to help on an individual basis.

      I believe a day center rehabilitation on a daily basis for at least a month could be helpful to all those with brain injuries or brain dysfunction. It’s something if I had the funding I think should exist around the world. I have recently started taking Adderall once again, and it’s very helpful!

      I think the level of distraction is so difficult. The second someone asks me a question while I’m in the middle of though, I often loose the thought and follow-thru becomes impossible. If I have one thing at a time, and total quiet I do well.

      I have had NO music, NO tv, NO nothing…our house is totally quiet and boring! It’s the only way I can live. Noise is a distraction in the simplest form, but I’m appreciate the nature noise of birds, animals, etc.

      As for my daughter, she was left on her own to resolve all her problems. I helped her, until I was injured. There is no place that helps people with these issues. I couldn’t help myself, and without education no one was there for either one of us. We both had emotional support, but lacked anyone to help with prioritizing and organization on a daily basis.

      We’re plugging away, and accomplishing our short term goals. Traumatic brain injury, brain dysfunction and chronic illness is a family affair. It affects everyone, but daily intervention can be helpful.

      • Madelyn Griffith-Haynie, MCC, SCAC

        July 31, 2012 at 2:00 pm

        WELL said! You describe my intense dislike of the “tips and tricks” books and coaches beautifully.

        NOBODY has the money for 24/7 support — or the time to experiment endlessly with what others (who don’t live our lives or have our brains) say we must do to make our lives work.

        As agonizingly slow as it may seem initially, the best approach, IMHO and experience, is take the time to understand HOW to “drive the very brain you were born with.” THEN you can bootstrap your you-specific knowledge and develop your own systems and work-arounds.

        You will also develop an “instinct” (and the self-assurance) to sort through the world’s tips and tricks BEFORE you spend time implementing and discarding (and feeling crummy about yourself for yet another failure).

        I don’t know which is more frustratingly difficult to manage (as if it really mattered, lol) — having a real-life memory of what you are shooting for, but lacking the ability to do it like you used to, or having to figure out WHAT you have to figure out how to do, building it from the ground up. Both are tough!

        Check out my recent comment on BrokenBrilliant’s blog — his “not necessarily slower” post.


        PS – thanks for the reblog of my “Tribe” post

  5. Martin

    April 12, 2013 at 12:30 pm

    I read your article right now. I am sorry if you dont understand, because i am from Norway and not as good in english 🙂 you have vertical heterophoria? But the prisms aint working?

    • brain injury self rehabilitation (BISR)

      April 16, 2013 at 6:39 pm

      Martin, I apologize for the delay in response. I do have vertical heterophoria and prism lens do work. What doesn’t work is when there are several health reasons all inter-related to brain injury that cause dizziness. What I forget often is the use of patching one eye. Also, the need to follow-up with eye appointments because lenses frequently change often. A temporary fix was mono-vision. Are you dealing with Vertical heterophoria? What helps and what doesn’t? Take care and stay safe, Edie


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: