Chronic Lyme Disease Summit 2

What an Attack Feels Like

It happened again last night, 2:12 a.m. It has taken many years, too many, but I have finally realized the doctors are right. There is not anything gynecologically wrong with me.

These attacks are two-fold.

On the one hand, there appears to be an inner ear problem which causes the room to spin, the kaleidoscope to appear over my right eye's field of vision, the intense buzzzz and ringing in my ears, followed by the need to lie down lest I fall down. The whole thing ends in vomiting and occasionally fainting and sometimes temporary hearing loss and a migraine.

Once that's over, the muscle spasms begin. These are not confined to the abdominal/uterine area, although that is the feature presentation. Spasms occur in my extremeties and even my face. The spasms bounce around for between 1 and 2 hours, during which time I try to stretch my muscles as best I can, and can do nothing else but lie there and "take it." My joints all crack repeatedly during these episodes, every time I move.

When the muscle spasms subside, the pain sets in. It is mainly concentrated in my lower back, shoulders and neck, and it's difficult to take a deep breath as my upper back area feels like something constrictive is there. The muscle pain feels like fire deep inside my body. It lasts for most of the day following these episodes, and sometimes into the next day, too.

I lose an entire night's sleep during these episodes, which puts me back into a sleep deficit and will take several days to be "right" again. This just makes the muscle pain flare up even more, and of course extreme fatigue.

The good news is I have an appointment with a neurologist in July. I wish I didn't have to wait so long, but she is one of the best in our area, and it sounds like I have finally been taken seriously. She also runs a sleep disorder clinic, which is something I should have done a long time ago, so we will get it all fixed up now. One-stop shopping, so to speak.

This inner ear thing makes a lot of sense. For one, I have great difficulty walking down stairways as I am constantly afraid I will fall and I'm always dizzy. This is especially fun at the beach when I have both dogs on-leash! When I drive in the car with all the windows shut, I feel incredibly fatigued and have to constantly try to pop my ear, almost like when you're flying and you have to clear your ears. Only my ear never clears. I find myself trying to clear my left ear almost all the time. It has become an involuntary habit, basically. I never realized it, but there is a constant "hum" in my ears. Thankfully I have no hearing loss to speak of. I couldn't imagine not being able to hear music, Ben's laughter, Gil's voice, Maggie's meow, Hobie's BARK! or Hector's howl. The ocean and the birds. It would be horrible, and I hope that never happens.

Speaking of flying, it makes a lot of sense that I become so ill on airplane trips if I have an inner-ear problem. And the same is true for rock concerts -- I always get sick after rock concerts. The loud noise can exacerbate inner-ear problems (duh).

The muscles spasming and the constant numbness and tingling of my fingers and toes is worrisome, but I am on the road to getting some answers, so I will try to keep good notes and see the positive side of it for now.

Comments

  1. I'm sorry to hear you are in such pain, but have you thought your digestion might be worsening your symptoms? Check out this site:

    http://www.bodyecology.com/

    Also if you have poor digestion you might have nutritional deficiencies. I would definately get vitamin B12 checked if you are vegetarian. b12 deficiency can cause neurological symptoms.

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