light-headed - Rare Disorders Message Board

paperlantern · 09-30-2003, 03:09 PM

I am a 24 year old male. About two months ago I was driving and began to feel very light-headed. It lasted about 20 minutes. It happened again about three days later. This then began to happen more and more often until it became so bad that I went to the emergency room. I felt as if my body was going to completely shut down. I had tons of blood tests done, an EKG, a chest x-ray, and urine samples taken. I was sent home as they could find nothing to keep me there. I was given a medication for dizziness.
The light-headed feeling would at times get worse, but it would never completely go away. For the first two weeks I experienced the following symptoms along with the light-headed feeling: muscle weakness, severely increased appetite, a feeling of poor circulation in the limbs, small red blotches on my knee, and a stiff, weak neck. I began to see my doctor who took further blood tests and began to treat the illness as a virus. The only thing out of the ordinary in all my blood work was a high white blood cell count. He put me on Methylprednisolone to help my immune system fight the illness.
Then about two weeks into the illness, I began to experience severe headaches. I felt as if my head was going to explode. I checked into the emergency room once again, worried that I might be having a brain hemorrhage or aneurysm. I was sent for an MRI, and given a Lumbar Puncture procedure. Both tests came back clean, and I was prescribed painkillers (Ultracet) to deal with the intense pain. During this time my appetite went in the opposite direction and I barely was eating.
I continued with my primary doctor who was unable to diagnose the illness. He had me meet with a doctor from the Center of Disease Control as well. My doctor began to feel that everything may be psychological, and wanted to put me on Paxil. I was hesitant about this because I felt maybe I should have a psychological exam before being put on the medication. He insisted the medication was harmless and worth a try.
The illness then slowly got better, but never completely went away. I began to try and resume normal life activities. I went back to work, and socialized, but the light-headed feeling was still there and made it nearly impossible to enjoy everyday activities. I began to ease myself off the Paxil because I did not like the side effects.
Then after about two weeks the light-headed feeling became debilitating again. I decided to completely start over with a new doctor. His first step was to have me wear a Holter Monitor. When he examined the results, he felt there was a problem. He said my heartbeat was often higher than normal. When I was sleeping it ranged from 40-100 beats per minute. When I did mild exercise (walking 1 mile at 3.5MPH), it was around 170. Therefore he sent me to a cardiologist.
The cardiologist looked at the results and felt that there was nothing unusual about this. I was baffled at how two doctors could look at a test so differently. He took another EKG and decided things look fine. However he did decide to send me for a Tilt Table test, which the results are pending.
I also felt the symptoms could be as a result of a poor diet at times. However I recently had a Glucose Tolerance Test, which showed nothing out of the ordinary.
I am not sure if this is a physical medical ailment or a psychological one with physical symptoms. I am currently taking St. John’s Wort as a natural way to combat the possibility of anxiety. At this point I am very nervous that the Tilt-Table test may not show anything and I will be back to square one. I am desperate to get back the quality of life that I have lost. Any advice would be greatly appreciated.

In Summary:

Main Symptom: Light-headed

Accompanied at times by: sweating, muscle weakness, poor circulation in limbs, dramatic increase/decrease in appetite, small rash on right knee, weak and stiff neck.

Medications taken so far: Meclizine, Methylprednisolone, Naproxen, Ultracet, Avelox, Paxil

Tests taken so far: EKG, chest X-ray, heart enzyme exam, urine sample, MRI (head and neck), Lumbar Puncture, Holter Monitor, Echocardiogram, Glucose Tolerance, Tilt-Table Test.

maggie39 · 10-01-2003, 01:26 PM

Hi Paperlantern - check out the other post here called "neurocardiogenic syncope"
What was your Blood essure like through all of this? I think your symptoms sound like neurocardiogenic syncope even though you're not actually fainting. It's basically and inability to regulate blood pressure (which may be why your HR is fluctuating so much) - BP goes too low and causes the symptoms you're experiencing and in some of us it goes so low we faint. They use the tilt table test to diagnose this, so I'll be curious to see what they say about that - did you feel worse while on the TTT?
Also I think you mentioned St jOhns wort - did you start that before all this was going on? I believe that it can lower BP.
Its interesting that you mentioned you felt a little better on the Paxil - this is sometimes used to treat NCS. It helps some people and makes others worse.
Maggie

reijo · 10-02-2003, 02:39 PM

Paperlantern, I went thru a period such as this. It started about 11 years ago. I just passed out one morning......nothing happened to cause this. The doctor did some tests and nothing showed up. About a year later (seems to always be about 12-18 months apart) I woke up dizzy and nauseous. Once I threw up I got better quickly. Still no diagnosis. This happened several more times and finally I had an EKG, EEG, Cat Scan, wore a Holter Monitor(I have mitral valve prolapse) and had an Echocardiogram. Still nothing. Although the Holter Monitor DID show up episodes of my heart racing BUT that never occurred during the episodes I had. One doctor said that the mitral valve problem was so minimal that he would almost call it a normal heart. They seemed to want to say that everything that happened was because of this. I didn't agree because I know my body and I know what DID and DIDN'T happen prior to getting dizzy/passing out.

I've even had a couple of passing out situations where it happened so quickly that I would not have been able to stop a car. I even wondered if it was more of an epileptic seizure (the minor type). Once I was sitting in a chair talking with my husband only to hear him asking me if I was okay. He said that mid-sentence I just stopped talking and my head dropped down. I asked how long I was "out" and he said only a couple of seconds

I say all of this to say that I can certainly understand your frustration. There were times that I wanted them to find something so that I could know what was wrong and go from there.

KNOCK ON WOOD......It has been 21 months since this happened last and I HOPE it won't happen again. It's scarry and always seems that no one else ever has had a problem similiar.

Good luck. Hope everything works out okay.

maggie39 · 10-03-2003, 07:39 AM

Reijo - that's very similar to what happens to me. Mostly in the morning, I start to feel very nauseous, warm, anxious, then I pass out, then when I wake up I still feel very sick, often throw up. It will happen anywhere from once a year to maybe 5 times in a year. For 20 years they though it was epilepsy, but now they think it's something called neurocardiogenic syncope. (There's another posting here on that). The fact you have MVP is interesting because there is a lot of controversy about whether that relates to this or not. There's also something called mitral valve prolapse syndrome. Some people theorize that it's not the mvp that causes the syncope, but rather there's something else going on that causes both the mvp and the syncope.
Maggie