My brain MRI was fine. No evidence of MS, no sign of something causing my headaches. My c-spine MRI showed that I have mild intervertebral disk space narrowing and mild central disc osteophyte complex, centered at C4. I won’t go into the history of my neck problems, but if this is “mild” I feel very, very sorry for anyone with moderate or severe problems. When my neck has “gone out”, the pain is 10 out of 10. It is like nothing I’ve felt before. Can’t lie down, sit down, move arms, head, back… I’ve showed up at the doctor’s office twice at 7:30am, without an appointment, crying and begging for help. Both times they gave me injections in my butt that knocked me out for almost two days. I guess, if the bone problem is mild, the muscle problem can still be severe. My physical therapist said I had the worst case of hypermobility in my neck that she had ever encountered. It must have been from all my head banging, rock ‘n’ roll days and all the extreme sports I played. That’s sarcasm. I didn’t do anything!
My neck first went out a week after a particularly bone-rattling roller coaster called The Iron Wolf. It was a stand-up roller coaster and they had head buffers on both sides to minimize injury as you were being tossed around. I was too short for them to buff properly, though, and my head and neck took a battering. My brain felt blended. One week later, I tried to get out of bed and couldn’t. The neck pain was excruciating, radiating down my limbs. I was so unfamiliar with bone/muscle pain, that I thought I was going to be paralyzed. I thought my spine was fractured or something. I lay there for hours with tears running into my ears, waiting for my husband to get home. That one healed on its own since I had no health insurance at the time, but I’ve had problems ever since. I guess I did go into the history of my neck problems, after all!
Anyway, back to the present: I added back in rice to my diet with no adverse effects. Unless this exhaustion and pain are caused by the rice?? Haha. Just kidding. I’ve added flax to my smoothies and started taking the zinc and ferrous gluconate supplements. The latter is meant to be taken 1 hour after food and 2 hours before food and, let me tell you, it is VERY HARD for me not to eat for 3 hours, so I’m cheating a bit on that one.
I stopped taking the birth control pill yesterday. My headache is all day, every day and is crippling me. I’ve spent a lot of time lying down in dark rooms in the last 3 weeks, my face is permanently pinched, I can’t deal with too much light or noise. I am constantly alternating epsom salt baths, ice packs, arnica, IcyHot spray, TENS unit, meditation, breathing exercises, anything I can think of to ease up my neck and back muscles and hopefully help the headache. After much research on my headache support group forum, I’ve convinced myself that it is caused by the pill, so I am going go stop taking it for a month and see what happens. I also want to quit the pill because I’m extremely sedentary and that contributes to the risk of blood clots (and being over 35 years of age). I actually think I would prefer any other pain to this headache (except for maybe the aforementioned 10-out-of-10 neck pain… and, when my period hits, I’m sure I’ll amend that statement).
I woke up full of gratitude this morning. There are people out there dealing with this and other illnesses with little to no support, starting their journey with so much less than I have. My heart breaks for them. Without my income, I am terrified of losing our house, our savings, our health insurance, but I could have started this illness with no house, no savings and no health insurance. What do people do? I am blessed and grateful to have a slight buffer. Like The Iron Wolf’s buffers, it may not be enough to save me down the road, but, for now, I can ride the roller coaster.
Rag and Bone Shop of the Heart 
Look up myofacial pain syndrome. Its part of fibromyalgia and coule explain your awful headaches.
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Too much mental exertion can cause VERY debilitating head pain too, along with problems with noise, light, etc. Seems like something so basic shouldn’t be able to do that, but it really does. I was in a constant state of overexerted for a long time before I realized that even the very minimal things I was doing were triggering my symptoms. It wasn’t until I stopped enough for them to go away that I realized they weren’t just a constant part of the illness for me.
Not sure if that’s what’s going on in your case, but it might be worth a trial of dark and quiet only for a while to see if it helps. The trick is not to add things back in too soon when it does go away, and to figure out how much you can add back eventually without triggering that kind of thing again. I know for me, there is a definite threshold and the consequences for crossing it are really bad.
For me, it was things like computer, TV, writing, reading, etc. Starts initially for me as a fuzzy uncomfortable feeling along my spine and into my neck and head. Then I usually get a bit sweaty. Then it moves on to sort of a burning sensation, and feeling like my skull is three sizes too small for what’s inside it. Sometimes I feel “hot” as well – like my face is pressed up against a fire. When it gets more severe, it feels like just hearing someone speak will rip my head apart from the inside out. I call that stage “brainfire,” and it is hands down no contest the most horridly uncomfortable thing I have ever been through. “Pain” is too simple of a word for it. I have learned to handle pain to a certain extent. This is torturous.
Once I’ve trggered it, it’s extra easy to set it off again for a while (like a week or more, usually), and getting things back to “normal” means staying away from triggers completely (which is the most boring thing in the universe, let me tell you – no TV, no reading, no computer, no phone, no audiobooks, no music, no meditation CD’s, nothing). The more strictly I can stay away from them, the faster it seems to recover.
From what I’ve seen, this kind of thing seems to be pretty common to ME patients. I remember a thread on a forum where people were describing what “post-exertional malaise” was like, and this kind of sensation got mentioned a lot in different words (brain frying, brain burning, brain feeling inflamed, etc.). Some people have theorized a connection to brain viruses, etc. or an autoimmune attack on the CNS. I know someone who said that Valcyte cleared up that symptom for her. But who knows.
I’m really sorry that you’re going through it, whatever the cause.
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Apparently my dreaming brain was feeling sympathy for you all night long, because I had another thought right when I woke up this morning. You seem like a very well-informed person, so I’m not sure how much I have to say wouldn’t be old news, but since it can be hard to find resources on any of this stuff, I figure it’s better to mention just in case.
Not sure if you’ve tried this already, but you had mentioned wondering if the B12 might be behind your headaches, correct? Are you off it entirely now? And methylfolate as well? I have seen people go through some pretty awful headaches as a side effect of starting (I just get super flu-like, but my husband is a headache guy). Might mean you need it badly, but have to ramp up the dosage very slowly.
Anyway, what made those headaches go away is potassium. Lots and lots of white beans, and bananas, and avocado, and coconut water, and sports drinks. Not sure if your body tolerates those okay, but it might be worth a try (more than 100mg of potassium in pill form is a little controversial since it can eat away at your stomach lining if it sits in one place like that too long).
There’s some evidence for potassium depletion as the body finally gets enough B12/folate to make new cells. The theory is that it then goes a little too crazy with it, and the resulting depleted potassium levels cause muscle issues trigger the headaches… or something like that. I do know that my potassium tested low when they first put me on B12, so it’s a possibility.
Anyway, again, not sure if you’ve already looked into all of that, but I thought I would mention it just in case. It’s an awful thing to be in so much pain without any clear hope for making it go away.
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