I apologize this is a long post. My girlfriend has been experiencing various symptoms for over a year now and has seen several doctors (neurologists, infectious disease specialists, headache specialists, chiropractors, cardiologists, etc) and still has yet to be diagnosed with anything nor is she seeing any real improvement. We decided to ask the collective intelligence of the internet, and if anyone has any information or advice that might help improve her quality of life, we would be very very grateful.
Her symptoms are:
Extreme headaches - almost always at night and frequently during the day. They get worse at night.
Dizziness - all the time but worse at night. She says she feels drunk all the time. Seems to get worse in rooms with fluorescent light or in big, open spaces.
Extreme sensitivity to light and sound - She wears prescription glasses to reduce the light and she often requests that we sit in total darkness and speak quietly. She can’t bear being outside when it’s bright out (especially when the snow reflects the sun.)
Fatigue and trouble sleeping.
Tension/pain in her neck - It seems to be the base of her skull/spine and a little lower. She recently has said that her headaches seem to radiate from this area.
General out of body feeling - She says she feels like she’s in a dream or that the world around her isn’t real. (not in a stoner/existentialist sort of way but in a legitimate physical way.)
Occasional migraines - almost only at night.
Neck and shoulder tension.
Tinnitus and clogged feeling in ears.
All of these symptoms seem to worsen as the day progresses, especially the headaches.
Other symptoms that might be related:
Depression and anxiety - and said she used to cry nearly every day. This started a few months or so before the headaches started.
Rapid heart rate - Sometimes it’s very fast, but it is always noticeably fast. Cardiologist says everything looks normal.
Acid reflux disease.
Possible lactose intolerance.
Also, this may not be relevant, but around the same time these symptoms started appearing she started feeling pain whenever pressure is applied to her clitoris. (Sorry if TMI.)
She says that shortly before the headaches began she experienced a flu-like sickness (fever, cough, body aches) for a week. She took ZzzQuil to help sleep and had a constant head-rush feeling the next day. She got horrible vertigo that same day and went to the ER where she received a CAT scan that came back clear.
She has been tested for Lyme Disease, Lupus, various auto-immune disorders, and has had a few MRI’s of her brain and neck. Everything has come back negative/normal. Doctors have no idea what is causing her symptoms.
Going to the chiropractor helps relieve some of her neck pain and headaches, but the results are short-lived (I’m taking mere minutes.) Osteopath seems to have similar results.
Alcohol makes the headaches and dizziness worse. Marijuana makes the dizziness worse and her heart rate really fast (and doesn’t seem to help her headaches at all.) She never used either regularly and has stopped using both entirely.
She is also a vegetarian with a variable diet (ranging from big, strictly organic meals to junk food) but she usually eats well.
The only thing that has really helped her so far has been low dose amitriptyline (25mg/day). It greatly reduced her headaches, but it had several side effects and she eventually stopped using it.
Any information that could help us would be greatly appreciated.