About Me: Female, 29, Clayton, GA, member since May 2012
My trouble all started in 2002, when I was a senior in high school. I started having trouble sleeping. I didn't really think anything of it because I had a lot on my plate - several AP classes and a bunch of extra curricular activities - so I figured it was just stres
[More]s. The fatigue that made it near impossible to stay awake during my morning classes and kept me tired throughout the day I assumed was a direct result of my lack of sleep. I had occasional headaches and other aches and pains that I considered just a natural part of life.
Nothing really troubled me until I started having dizzy spells. I noticed it mostly when I stood up after sitting for a while, so when the doctor diagnosed me with orthostatic hypotension, it made sense. My blood pressure was a bit low to start with, and it dropped distinctly when I stood, so it seemed pretty obvious. He didn't think it was severe enough to warrant medication so I was told simply to get up slowly.
That summer, I was prescribed Effexor as I had become extremely irritable. Again, this was attributed mostly to stress, and the Effexor seemed to help, so off to college I went, eager to continue my studies. But that is when the nightmare truly began.
My sleep troubles progressed to full-blown insomnia. Many nights I couldn't get to sleep at all, and if I did it was rarely ever before 3AM. I had so much trouble staying awake in my first class of the day that the professor eventually told me that if I wasn't going to stay awake, I may as well not come at all. I was having trouble keeping up with the rest of my classes as well. Eventually, I became well and truly depressed.
I trudged on as best I could, trying to make it to at least some of my classes, but I was growing ever more depressed. I had always been an A student, and now I was failing almost every class. I had majored in music because it was my passion, and now I hated it. I couldn't sleep. I had little interest in eating. I was dizzy, my mind was foggy... I knew there was something wrong with me. But what was it?
A classmate suggested that I visit the campus psychiatrist. So I did. And I thought I had finally found an answer. She said that I was definitely depressed and increased the dosage of my Effexor.
For a while, I actually felt better. Then one evening, my hands and feet started to swell. And I was actually kind of happy about it because I knew exactly what this was. It was an allergic reaction. A quick trip to the hospital took care of it. The only issue was that I couldn't imagine what had caused it.
When I saw my allergist a couple weeks later, he said it must be the Effexor. I'd have to stop taking it.
My depression worsened after that. I was still failing most of my classes. I had no hope of catching up. I had no hope.
At the end of the year, I was academically suspended. I moved back home, transferred to a local school, changed majors, and tried to put it all behind me and move on.
But the depression persisted, and I wound up seeing a number of psychiatrists and psychotherapists. My GP put me on Prozac while I was between therapists. I hated the way it made me feel, but it did seem to help, so I took it. All the while, though, there was one thing that absolutely nothing seemed to help. That was the insomnia. By that time, I had begun to adapt to it. I basically became nocturnal.
Eventually, one of the psychiatrists put me on Trazadone. It did help me sleep, but it made me feel so groggy and drowsy for so long after I'd taken it that it just wasn't practical.
In the meantime, the dizzy spells that had started a few years ago started getting worse. Before, the feeling would come and go, but now it started to linger. For days I would feel constantly dizzy, whether I was standing or sitting or lying down. It got worse when I changed positions, but it never really went away. The fatigue was worse too. I could sleep all day and still feel exhausted when I woke up. I felt as if my batteries were dying.
My mother, who was a nurse, started monitoring my blood pressure and blood sugar. My sugar was usually fine. My blood pressure, however, was always low. On a couple of occasions, it got low enough to be troubling and off to the ER I went.
Of course, by the time I got there, it was high enough to be normal and the doctors would give me that look. The one that clearly says they think you're overreacting. None of my symptoms seemed like anything to be worried about.
And maybe they weren't. Maybe I was overreacting. Maybe it was all in my head.
But I couldn't fake low blood pressure. One night it dropped very low, and I headed back to the ER, praying the whole time that it would just stay that way long enough for the doctor to see that I wasn't making it up or overreacting. This time, I got a doctor who seemed to actually care. My blood pressure did increase, but he said that was to be expected and went on to address my other symptoms. By now I'd started having rather severe headaches during these spells as well, and he seemed to think that - along with everything else - warranted a CT scan.
I was thrilled that someone was finally doing something. The nurse asked me when the scan was finished if I had ever had any sort of head trauma, which I found somewhat troubling, but I told her I had not and it was never mentioned again. When the doctor finally returned, he gave me an explanation I was not expecting. He told me I had a severe sinus infection that was somehow causing all of my symptoms.
I was doubtful. But I took the antibiotics he prescribed and for a while, I did feel better. I went for a few months without any of my "spells."
In the meantime, I moved in with my best friend and was thrilled when my sleep issues improved. Adapting to someone else's sleep schedule seemed to help. I still thought that the doctor must have been right about what was causing my dizziness and other symptoms.
Until I had my next bought of fatigue/headaches/dizziness. This time, it was worse. Now I suddenly found myself listing to one side when I walked, bumping into doorways and tables, and sometimes suddenly and inexplicably falling to one side. There was always a wall or something to grab on to, so I never actually fell, but it was close enough to be a bit scary.
My legs were often stiff and achy, and I had terrible pain in back and shoulders sometimes. I would often wake up with a sore neck and back, but I always attributed it to sleeping funny. I didn't pay much attention to the aches and pains. I've had random aches and pains since I was a child. I had more x-rays as a child than most people probably have in their entire life, but no one ever found anything wrong. Occasionally they would attribute my pain to a sprain, but usually they said it as just "growing pains."
I didn't realize quite how bad the pain and stiffness in my legs was until we moved into a house with stairs last fall. I have far more trouble getting up the stairs than a 28-year-old woman has any right to. I also have more trouble remembering things than I should. And sometimes I have trouble thinking of the right word for things. I know what I'm trying to say, but sometimes I have trouble saying it.
Several years ago, I saw an episode of Mystery Diagnosis about a girl whose symptoms were startlingly similar to my own. Her only diagnosis for some time was orthostatic hypotension, the same thing I had been diagnosed with. But just like me she had other symptoms that did not fit. Eventually, it was discovered that she had a Chiari Malformation. I have always remembered that. It's always been in the back of my mind.
Recently, my symptoms have become more persistent. The dizziness is not going away. Neither is the pain in my back. There is a near-constant ache right between my shoulders. Sometimes it becomes more of a stabbing pain. Sometimes the pain shoots down my arm and my fingers tingle, almost as if I've hit my funny bone. My neck is stiff and painful at times. There is a pressure in my head that builds up into a terrible headache, at times. And sometimes I have a shooting pain on the right side of the back of my head, as if someone is stabbing me there with a knife.
I feel that I should see someone, but I have no insurance and no income. I have been unable to find a job, in part, because of my symptoms. I don't feel comfortable driving, and I worry that I would not be able to handle working on my bad days. So I have no money to pay for medical care and no idea what to do. I'm terrified that if I do go and see someone, in spite of my financial concerns, they'll treat me the way they've treated me before - as if I'm blowing things out of proportion and there's not really anything wrong. Lately, I've found myself almost wishing that I would actually fall or black out or lose feeling in my hands or something serious so I could really feel justified in seeking help.
I know this is very long, but I wanted to get everything down in one place. My sincerest thanks to anyone who reads all this. I shall greatly appreciate any advice and support.
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