Help With Headaches


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.

Moderator Action

Welcome to the SDMB, PapaSmurf1502.

The General Questions forum is for questions with factual answers. Questions about medical advice belong in the In My Humble Opinion forum. I will move this thread for you.

Also, please note that any answers you receive here are just the opinions of some folks on the internet and should not be taken as the equivalent of professional medical advice.

Moving thread from General Questions to In My Humble Opinion.

I am not a doctor and this is just an opinion but I would get her a CAT scan and look for a brain tumor.

Starting with all the usual disclaimers…

My suggestion is that she go to her doctor and talk about basilar migraines.
Similarly, she should talk about arteriovenous malformations from the basilar artery.

Both of these conditions are known to produce a collection of symptoms very similar to those you describe.

Her doctor will probably recommend that she see a neurological specialist; but at the very least he should send her for a MRI scan.

I had a sleep study that was very helpful; I didn’t end up needing the CPAP, but some of the methods they taught me has cut down drastically on the number of headaches I get.

OK this all sounds too serious for this, but on the off chance:

When my mum had a high-stress job she had similar (though milder) symptoms. My SO has really bad migraines. Both go away with good yoga & relaxation exercises. This might be why the chiropractic works briefly.

The idea about it being yoga, and not just brief exercises to relax, is that it becomes ingrained as a habit. The relaxation, posture and the way of carrying yourself become your new normal. This takes a while.

It sounds a little crazy, and it might be something entirely different. The description, however, has similarities to severe tension headaches. These can be the result of carrying tension in your body, in many different ways and places. Essentially you need to relearn all posture, relearn how you carry yourself and relearn what relaxation means.

You can look into yoga and alexander technique. In my experience, many people are so bad at learning to relax they often automatically fall asleep the minute the finally manage to relax their facial muscles: their body has learned that relaxation means sleep. It can be difficult to find non-woo practitioners, unfortunately.

Please don’t stop researching what is going on!! But I would suggest trying this as well (just to be VERY clear: this does not cure brain tumours!). It is always good to find out more about how your body works, what it responds to and what has become ingrained for your muscles. The vast majority of people have no idea of how this works for their body, and this stuff does translate into headaches.