About Me: Female, 48, Santa Ana, CA, member since Nov 2009
Since November 2003 I have been broken. I went to a Kiss concert and it was so loud my ears clogged up for days. I went to the doctor and they thought I was crazy or just wasting their time. Two weeks later I could not take it any longer so I held my nose closed and b
[More]lew out my ears so hard I almost fainted. Since then I have been dizzy and broken. My dizziness is not the spinning type. It's more of an off balance not quite stable/steady feeling. I don't have dizzy spells, I have this feeling 24/7. Laying down is better than standing. I feel weak if I try to stand too long. My head is fuzzy, foggy and tingly. I startle super easy to certain sounds and tones. Looking up and reaching up makes me feel worse. A neck massage makes me feel better. I was tested for Benign Paroxysmal Positional Vertigo (BPPV) and told I don't have that. I don't have MdDS (Mal de Debarquement Syndrome) because I have never been on a cruise. One Neurologist suggested MAV (Migraine Associated Vertigo) but my GP said no that's not it. I no longer go out alone. I usually make my husband do the shopping. A trip to the grocery store is so hard for me I am scared I really will faint or pass out.
I have been to many general practitioners, 2 ENTs, and 3 Neurologists. They cannot find anything wrong. My hearing is better than normal for my age (44 soon). I did have holes in my tympanic membrane on one visit with my GP but it was gone before I got to the ENT. I had an ENG test and failed the caloric testing. When they squirted hot and cold water and air into my ears to measure my response my numbers were too low and weak to even bother. The test itself, however, did not bother me or make me any worse. The Neurologist got me an MRA/MRI with and without contrast. Only thing that showed up with that was some huge horrible sinuses. I was only given Flonase for that and told it's not what's causing my balance disorder. I wake up EVERY morning with a stuffy nose. When I sleep on one side and roll over to the other side I feel my sinus clear and drain to the other side (if that makes sense).
I have been on Valium since summer 2005. I take 2mg Valium 3x a day. Recently I got a prescription for Klonopin (.5mg 2x day) but I am scared of addiction and side effects. Every time I try it I get nausea. I currently take 2mg Valium and .125mg Klonopin. I think I am trying to wean myself onto Klonopin.
I have not slept good since this started in 2003. I wake up every 2-3 hours. The most I have ever slept was 5 hours one time and that was so shocking I couldn't believe I did it. I sometimes have insomnia but reading before bed helps me fall asleep. I just cannot stay asleep. I do not wake up and look at the clock and think about getting out of bed. I wake up and jump out of bed onto my feet and then look at the clock to see what time it is. I also wake up a lot with my heart racing and pounding, sometimes so loud I hear it and feel it in my head. My doctor thought it might be Sleep Apnea but further testing showed only very minor sleep apnea and it was ruled out as the cause. I had an Echo of my heart and it shows and enlarged Bi-atrial valve and a murmur.. again.. not what causes my dizziness. My heart NEVER races or goes fast when I am awake. My heart skips beats but I was told everyone's does. My normal heart rate is 88bpm and my blood pressure is holding just under 140/90. Most recently it was 135/85. If they wait 5 min and take it again it drops to 125/75. My doctor said I have "lab coat high blood pressure."
I have Restless Leg Syndrome. I have had RLS since I was about 8 years old. My parents put me on a plane to go visit my grandma and I remember crying and telling the flight attendant if I didn't stand up or walk I was going to die. It was my first RLS attack and it was just this horrible intense feeling that if I didn't get up and move my legs I was going to DIE! Now I have episodes of RLS daily, especially at night or on long car rides.
I am overweight and out of shape. I was overweight when this started, but now due to this illness I have gained even more weight because I cannot exercise or even walk but for a couple minutes. Plus I suffered a knee injury in 2008 and now my knee pops out of place if I walk too fast or twist wrong. I do swim daily to keep some activity in my life.
I have a lot of pain, especially at night. After a day of housework when I sit down at night then go to get back up I have pain in my legs and feet and back. Almost like sitting has stiffened me up. I think I have Fibromyalgia but I have not been diagnosed officially.
The only other thing is my vision. Over the past 4 years it has gotten progressively worse, but I was told that is normal with my age. Though both my parents had excellent vision and never needed corrective eye-wear. When I don't wear my glasses my dizziness and balance feels worse.
That's the jest of my problems. I don't know if it is anxiety or what is wrong with me. Some days are better than others. Some days all I can do is lay on the couch. I do NOT have depression. I am happy. I love life. I want to go out. I want to go to the mall. I want to be active. I just can't.
Let me just add this.. Because I don't look sick my family is starting to doubt my illness. They say I am just making excuses. NOT TRUE!! They say stuff like, "You look fine to me." They have no clue what I am feeling and how horrible this is. I wish they could feel what I feel for just 5 min and then they would get it. I don't even go out to dinner or movies or shopping at the mall (and I LOVE shopping) because I feel so darn horrible/dizzy/fuzzy/foggy/off balance. Gosh this is horrible. I need friends who understand. Please!
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