OT: Health Issues

@#$#@%#$%@#$!!! – Me

Friends that follow me on facebook know that I have been having some health issues lately.  Correction. I have been having some health issues for quite some time.

The current diagnoses are:

  1. Vestibular hypofunction
  2. Migraine associated vertigo
  3. Moderate hearing loss
  4. BPPV

This means I pretty much always have a serious headache. I am nauseus. I am dizzy, unable to walk a straight line, dont sleep well and more.

I am getting increasingly tired of this. I am confident in my ENT but I still feel like something else is wrong. I am, to be quite honest, a little concerned.

I have missed time from work. While they have been understanding and I have plenty of accrued PTO, I don’t like being unreliable. My company is still unstable, going through waves of layoffs, and I don’t want to be on THAT list.

I am researching my symptoms and desperate to speak to anyone who has ever experienced MAV, BPPV or anything resembling it.

I am trying my best to ward off the depression that often comes with a chronic illness. Interestingly, the meds I was given for the MAV are also an antidepressant. I am looking forward to that side effect.

Again, if you know anyone with these types of symptoms past or present, please do send them my way.

I don’t know how people with chronic illnesses manage cuz like, dudes, I am sucking at this.

All I wanna do is cry.

17 Thoughts.

  1. I hope you are feeling better. I have followed your Blog for quite a while. I am a biological mother and a mother of a five year old daughter we adopted from Guatemala. Sometimes I forget which is which. I don’t always agree with you but yu make me think and yo are a beautiful writer. Enjoy reading your blog and my prayers are with you for your health!

  2. Email me, if you’d like. I had a horrific BOV episode that ended up being (their best guess) a virus in my brain that caused swelling around my ear nerves or something??? It was horrible and I ended up retroactively being able to drop that semester of school, which didn’t help me out at all. And I had no insurance, so I never really found out what was going on because I didn’t have money for tests beyond the ones to rule out brain cancer. I was given anti-nausea medicine but that was all I could afford. That’s why I haven’t piped up, because I don’t want you to think my experience was like yours should be. I also had chronic migraines. I was not a happy camper for many reasons, but health was a real issue there.

  3. Kelly – Thank you for your kind words and well wishes. And please, I dont ever expect everyone to always agree with me. As someone who agreed with people when she shouldnt have (and gve her child to strangers) I value those that can speak for themselves and their beliefs (in a respectful manner).

  4. Thorn – Thanks. I will. Interestingly, my issue seems to be my right ear and around it. Your story now intrigues me.

  5. In 2005, I went through a period of about six months where I had these exact symptoms. I underwent multiple diagnostic tests, MRI of the brain, GI tract testing, ENT testing, echocardiogram, even anxiety counseling and meds, in the end the diagnosis was virus of unknown etiology. After several courses of antibiotics and meclazine, it stopped as mysteriously as it began.

  6. Have you had a brain scan MRI? Believe it or not there is a group promoting baseline brain scan MRIs much as mammograms are considered routine. I learned about this at the NYU medical center where my husband underwent GKS for an acoustic neuroma (nonmailignent and most common brain tumor). BTW two years later he is running 10 miles a week. Here is a link to an article about the program in NY. Good luck.

    http://www.nydailynews.com/ny_local/bronx/2009/01/11/2009-01-11_doctors_free_mri_scan_van_is_gift_to_new.html

  7. Suz, I need to catch up on the details in FB, but hope this is something that can be treated, if not the root cause, then at least the symptoms. I know from my own experience that getting symptoms under control helps to put the actual disease or syndrome into perspective.

    (((((((hugs)))))))

  8. man im sorry to hear you are suffering. have you thought of going to a homeopathic? natural remedies might be of some help. hope you get well and find some relief soon.

  9. I don’t have any point of reference with chronic illnesses, but I do get intense migraines often and can imagine the pain you are feeling. I hope that whatever they are giving you for the pain helps.

  10. Hi. I’ve had what I THINK is BPPV for almost a week now, only when I get up in the morning. But to my knowledge, BPPV doesn’t cause headaches- “just” dizziness and sometimes nausea that comes on the minute I sit up/stand after being in bed and then goes away. No other CNS symptoms. I had it for only a day almost 3 yrs ago, now it’s back but feel better than I did earlier this week. There are things that you can do to get the ear crystals back where they’re supposed to be (look up Epley maneuver)

  11. Hope you are feeling better, Suz. Miss seeing your posts.

    I have had a few episodes of what I think might be BPPV. I have gotten so dizzy and nauseous that I simply couldn’t remain standing nor sit up at all. I was flat on the living floor or my bed, wherever I happened to lay down. These episodes have lasted from several hours to 24 hours.

    I realize that they are relatively short periods of time compared to what others experience. I think that each episode has been preceded by some certain movement that I’ve done. This is just me trying to find a cause; but I really do think that my body’s movements cause those crystals in my cochlea to get shaken up and displaced.

    Just before one episode I remember that I sat up so suddenly in the middle of the night ( a dream or something woke me) that I felt my eyes do a little nystagmus (sp?) dance….just like in the cartoons.

    Most of the next day I spent laying on the living room floor. The nausea and vertigo were just too bad to even try sitting up.

    I did go to a doctor after that time. He agreed with my thoughts that it was probably BPPV.

    And last winter I was in P.E. class with the kids and I was demonstrating how to lay down on a giant beach ball and roll back and forth…not so smart a thing for me to do. A few hours later I was very woozy and fought the dizziness enough to not lay down in my car for a while, but rather forced myself to drive home. Just as soon as I got home I was in flat bed for the the next 24 hours. I could not get up even once.

    I am very, very careful about how I get up from bed in the morning. Even from the couch if I am laying down while watching a movie or reading. I avoid any quick motion that moves me from laying flat on my back to sitting straight up. Instead, I roll slowly to my side and push up with my arms and then fully sit up. i think this has prevented some episodes….just my own thoughts.(.and maybe i’m a bit superstitious), but I really do believe this slow movement has kept me from having more episodes than I have already had.

    Hope you feel better, soon.

  12. Roxanne – Thanks for your kind words. I am actually doing better. I have several posts in draft stage. Just havent realeased. Will explain why in a post. Cheers to you!

  13. Hi there. I fell upon your blog purely by accident but your opening comments caught my eye. Just curious, but have you visited a neurologist that specializes in the treatment of migraines?

    • Leslie – Sadly, I have not yet. I do intend to. I am responding to the meds but as noted earlier, dont really want to be on them for life. Additionally, this week I had a pretty significant migraine with aura (sparkling diamonds in my field of vision. They were pretty, but quite distracting.0

  14. What city do you live in? I can give you the name of a very reputable doctor in your area. Then you can make an appointment when you are ready.

  15. Physicians who specialize in head pain can now take an exam and be board certified in headache management. This select group of doctors have the knowledge and experience to treat challenging conditions. These are the medical professionals that you should seek out.
    Try http://www.achenet.org and in the upper right hand corner of the page you can find a UCNS healthcare professional in your area. Good luck.

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