I was wondering if anyone might be able to help me fit some pieces together. I've been to so many doctors and specialists, and I feel like they are missing something.
I am legally blind, have been since birth. However, in the past 2 years the limited vision I do have has been worsening. Ophthalmologists and Neuro Ophthalmologists can't find anything wrong with my eyes to explain this.
Also about 2 years ago I started getting severe debilitating headaches. I have a very high pain tolerance, but these headaches were so bad that I couldn't move and felt sick to my stomach. About a month after the headaches started I had episodes where every muscle in my body would contract until I was in a ball and shaking. These episodes were also very painful, during them I would be fully conscious, but unable to control any part of my body or respond to anyone or anything.
Those episodes landed me in the ER. The doctors seemed baffled. They did a CT Scan which came back normal. They told me they had no idea and sent me home with a referral to see a neurologist. The neurologist ordered an MRI, which also came back normal, except that there was a "more dramatic difference between the light and dark matter in the brain then in most individuals." He said he didn't know what would cause that, but didn't think it was important. He told me I was having severe migraines and put me on Propranolol to help prevent them.
The headaches became less frequent once I started the medicine but I still get them about once every 4 to 6 weeks.
I've always had poor balance and coordination but last February it got so bad I couldn't stand on my own. The first evening it got bad, I blacked out, without losing consciousness, and everything started shaking. Along with this I had the worst headache I've ever had. My RA told me I should go the ER. A friend from my dorm took me and we spent the entire night there. Doctors did another CT scan, an EEG, EKG, various lab tests, and finally a spinal tap. Everything came back normal. The doctors told me it was just migraines and sent me home. For nearly 2 months I learned to live with this. Friends walked me to classes and let me lean on them because I was not strong enough or balanced enough to walk on my own. Then I got sick and got a bad cough. I went to a walk in clinic near campus and they said I had Bronchitis and a middle ear infection causing vertigo. I was put on antibiotics and Meclazine (I'm not sure if thats spelled correctly). After about 2 weeks things seemed better.
With in the past month I've started having episodes of vertigo again. Some days it's almost continuous, like back in February and March. I've also had times when my chest feels very tight and I can barely breathe. The doctor says its just long-term vertigo.
During the past six months I have had bronchitis 3 times, along with 2 sinus infections and the middle ear infection. I also always feel cold, and my legs and hands often go numb. My hands also shake uncontrollably at times, and my knees and ankles buckle or roll alot when I'm walking causing me to fall. I also bruise extremely easy and have never had a normal menstrual cycle. I have been tested for diabetes, thyroid problems, and anemia. All these test were normal.
It seems weird to me that I have all these symptoms/conditions, and no doctor can seem to find a cause for any of them. I wonder if any of these could be related and if there is something the doctors are missing. I'm only 18 and I don't understand why my health is deteriorating so much. If anyone has any ideas or suggestions, I'd appreciate it.
The following user gives a hug of support to libertygirl14: wolfcafe (08-08-2011)
Your headaches definitely sound like migraines. Migraine preventative medication generally reduces the frequency of attacks, but it is normal to still experience them occasionally. Make sure you are avoiding migraine triggers (diet and lifestyle).
Your balance and coordination problems are likely caused by migraine. There is a condition called MAV, you might want to learn more about that. I would have hoped that the vestibular symptoms would have improved with your migraine treatment, I am surprised they didnt. I would consider asking your neurologist to switch to another preventative medication or add a tricyclic (like amitriptyline) or anticonvulsant (like topamax) to see if you can control both headaches and vestibular symptoms.