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undiagnosed dizziness

Posted , 8 users are following.

henryroth
henryroth

Hello.

I am 27 years old, 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

0 likes, 21 replies

21 Replies

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  • Soooze40
    Soooze40 henryroth

    Posted

    I have the exact same symptoms as you describe. I was diagnosed with vestibular migraine and put on nortriptyline 20mg at night. Awful side effects for approx 1 month but then relief. I've just had to up my dose as symptoms were returning, but I think it's getting back under control. I had exactly what you said about the lightheaded feelings made worse when in shops or offices with harsh lighting. I even started wearing sunglasses inside to see if that helped at one point. It was strange to think that a migraine could have this affect on me, without the typical head pain one would normally associate with migraine. I think you should explore this. It definately helps if you can ride out the first few weeks. Good luck.

  • Soooze40
    Soooze40 henryroth

    Posted

    Ask your consultant if you can up the doseage of the ssri that you are currently on or try changing it to a different one, such as nortriptyline as I mentioned on my earlier post.
  • rocksolid
    rocksolid henryroth

    Posted

    I was also going to say Vestibular Migraine. If you go to facebook and type vestibular migraine you will find groups there of people to talk to. You may also want to look up Verticle Heterphoria which is an eye condition.
  • betsy70690
    betsy70690 henryroth

    Posted

    Just coming from my GP, but honestly my best help is from this forum. We are learning to manage our lives with symptoms no one can really figure out. From recommendations of others I use meclizine, anti vertigo medicine, and it has helped. What I have learned is that have to lay down for about an hour after taking them. I take two chew them, and if often helps with many of the symtoms you described. I still have problems, but this has helped. I repeat later in the afternoon if I'm going to be in certain environments that I know will bother me. Also, and this may sound crazy, but you will most often see me with cotton in my ears. No Dr's will tell you that! But it buffers the environment and helps like insulation in a music studio. I also take Klonipin. Good luck.

  • gillian76726
    gillian76726 henryroth

    Posted

    Yes pretty much the same experience for me,too.  If you go to Veda, 

    vestibular disorders Association website, they are a great mine of info on all the vestibular problems, different types etc etc. 

    • betsy70690
      betsy70690 gillian76726

      Posted

      And I learned a new term today, from someone on this site, which really fits me. ( well mostly, we all live with this differently. But look up :Mal de debarquement (or Mal de débarquement) syndrome (MdDS, or common name disembarkment syndrome).

      Makes sense.

  • Terry6872737
    Terry6872737 henryroth

    Posted

    The Cleveland Clinic is certainly one of, if not the best treatment centers for vestibular issues in the United States.  How did this all begin for you?  Did you begin with sudden onset vertigo or did you just have a dizzy sensation that it began with?  Did the Cleveland Clinic do a rotary chair test to determine vestibular function in each ear?  The uncomfortable issues that you discuss, busy visual environments, light sensitivity, clearly relate to the vestibulo occular reflex.  This can be due to migraine or damage to the vestibular system itself. 
    • henryroth
      henryroth Terry6872737

      Posted

      Firstly, thank you all for the responses!

      Terry, after a particularly long and detailed history of drug abuse that has included heroin, opiates ect, i began using anabolic steroids flrnbodybuilding purposes. This went on for roughly two years without any issues, Untill one day it started causing massive panic attacks. The attacks lasted roughly six months while I was coming off the steroids ( which created a host of other issues as well)

      Roughly one year after i came off of everything I began to experience these sensations slowly out of the blue, and I have been trying to resolve them since. I clearly remember bending over while doing laundry and I stood up and immediately felt lightheaded and overall disoriented. Since that day it has more or less been a constant companion.

      Overall I am finally in great health, with this being the last and final "issue" to cross off my proverbial list.

      In regards to migraines, is it possible to have them without experiencing pain?

  • henryroth
    henryroth

    Posted

    I read the definition of pppd and that's definitely a possibility, I also think looking into Verticle Heterphoria is also worth a shot.

    A major issue I'm having is that many of these vestibular issues share the same symptoms. I go to vedas website and I feel like I could have anyone of the issues they describe.

    To further expound on my original post, i should also add, info find some relief in not wearing my glasses for whatever reason.

    I have a question from the group and I'm hoping you guys may share some experience, but does anyone else feel as though their dizziness also contributes to feelings of depersonalization/derealization?

  • betsy70690
    betsy70690 henryroth

    Posted

    Without going into specifics did you get relief with surgery or on medication? I'm glad there is hope and a place for answers.

    • betsy70690
      betsy70690

      Posted

      Actually I think it was terry who went to Cleveland clinic.
    • henryroth
      henryroth betsy70690

      Posted

      As of this point I have not figured out any valid options for relief. The only thing that has helped abate some of my symptoms has been the use of an SSRI (lexapro in my case) I have only been on it for 30 days at this point, and my symptoms have been reduced by at least 30%. Hopefully with time i will see more of an improvement.

      My main hurdle lately has been the depersonalization that goes along with this. As well as the depression that comes with having something wrong with you that cannot be identified

    • anne05147
      anne05147 henryroth

      Posted

      Yes, my consultant told me it would take over a year for my brain to heal as i was diagnosed too late to heal any sooner.
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