(updated January 2016)
I am on the phone with a friend when I get the panicked text. “Worst headache ever. 2 days now. Medicine not working. Help.” This is from a fellow hypermobile friend who is a pretty tough Mamma. Anything that brings her to tears is a lot. And when it comes to pain, there is nothing like a headache to remind us that we are, in fact, mortal.
I am not surprised she reached out to me. Though I have lived a lifetime of chronic aches, pains, and other problems, it is the nearly three year stretch of headaches that has brought me to my knees as a human. I never took pain medicine until I started getting them. And when I have one, I would smoke crack if it would make the pain go away. I have just come out of the woods, and I am still standing in the sunlight, blinking, waiting for the other shoe to drop. But for now, I have had a remission, which means I only get a bad headache once every two weeks, instead of every day, This is good. Real good.
I have learned a lot of things living with such terrible pain. Things like how to drive with sunglasses on at night. How to yell in just the right way to get fighting kids to stop yelling in the car without making my head explode. That using polarized transition lenses for my glasses is more effective than cheap sunglasses to manage my photo-phobia. How to take pain medicine early, and not wait until it gets bad. How important water is. And so on. My children have gotten bad headaches since they were young, and we visited a headache clinic at Children’s National Medical Center. They were amazing, and taught me things that I didn’t know, even from my ten years of nursing experience. There are several different types of headaches, and we, the headache sufferers, are all different with our own stories and solutions. But I am going to tell you about what I have learned so far, in the hopes that it sheds light for people who have not yet figured themselves out.
1. Most kids and healthy people get headaches because of dehydration. Kids sit in a hot class all day, and by 1:00 or 2:00, their veins are collapsing, causing that achy/pinchy feeling over their forehead and temples. The best solution is to chug a bottle of water. My children started drinking approximately 1 oz per lb of body weight during the day, and their headache rate dropped by a lot. The school nurse keeps a case of water bottles in there for them, and they are to chug it before she gives them Ibuprofen (to date, the only approved pain medicine for children, unless they need preventive medicine. My advice: don’t give Tylenol unless you can’t give them Ibuprofen. It sucks as a pain reliever, and it is brutal on the liver). Even though we have EDS and are prone to TMJ and whiplash, hydrating has been the #1 solution for our early stage headaches. (EDS people have veins that collapse easily. This is why we are prone to orthostatic hypotension…)
2. Many people have triggers such as foods, hormone swings, caffeine, alcohol, weather, allergies. Keeping a headache journal is a really great way to identify patterns. There’s an app for that.
3. Migraines, by definition, have a specific pattern. They have two phases: the squeezing (vasoconstricton) and the throbbing (vasodilation). They tend to be unilateral (on one side of the head). A very effective and natural way to manage them, if you are in a position to do so, is to get in a hot shower during the first phase when your vessels are tight and constricted, so you can force the next phase. When you get out of the shower, you may have a throbbing headache, but laying on an ice pack and taking a cat nap can make a world of difference. Also, know what medicine is for: caffeine is a vasoconstrictor (would be effective with throbbing headaches, but not with tight sharp headaches.) It can be very effective at treating occasional headaches, but if you find yourself taking Excedrin Migraine every day, then you are probably causing rebound headaches. Apparently Motrin can also cause rebound headaches, so only take it 2-3 times a week. Any more than that, and you may need to consider preventive medication. There are several rescue medications and some effective preventive medications, if migraines are affecting your quality of life. Please seek the help of a neurologist to learn about medication options. Another vasoconstrictor is nicotine. So, smokers, beware of what exposure to nicotine may be doing to your headaches. (But, in a pinch, a few drags off of a cigarette or a pipe may help with a stubborn throbbing headache if you are not in a position to get to rescue medication.)
4. TMJ (tempo-mandibular jaw syndrome) is a common cause of headaches. If you are waking up with one every day, you might be clenching your jaw at night, and would benefit from a consultation by a dentist. Night guards can be helpful, and there are also some new methods of testing and treating jaw alignment issues. Also, if you have had TMJ for a while, stopping the source is essential, and so is dealing with the trigger spots you now have in your jaw. Dry, dehydrated muscles that have formed knots don’t go away on their own! A therapist who specializes in trigger point release can help pull the ache out of your jaw and neck and break up the pain cycle. However, a more common cause of morning headaches is that your pillow is not supporting your neck correctly, and you are getting cervicogenic headaches.
5. Cervicogenic headaches (CGHAs), or headaches that start from the base of the head, are an underdiagnosed problem, in my opinion. In all of the years I sought treatment for headaches, no one mentioned this to me. They just called my headaches “migraines.” CGHAs can trigger a migraine, but they have a different cause, and treating them like migraines keeps people in this terrible cycle. The cause of these headaches is either cervical instability (the atlas and the axis joint which is where your head and neck meet is loose or unstable), or chronic tension from computer use, looking down at books/cell phones, trauma, poor posture, excessive movement, and neck weakness. The neck joint gets pulled out of proper alignment, compressing nerves and blood vessels, causing pain. This is a chronic issue, and people develop trigger spots and tension in their neck muscles, which prevents them from holding their head in the right place, and keeps them in the misalignment cycle. The fix is to stay on top of the muscle tension with the help of a therapist who knows trigger spot release. You must also be religious about good neck posture, using the right pillow, driving position, and injury prevention (limit trauma by being mindful of horseback riding, amusement park rides, dancing and whipping your head around, etc.) Have a physical therapist evaluate you for weakness and teach you the appropriate stabilizing exercises. I found that dry needling was the only way to break up old trigger spots and scarring from the whiplash I walked around with for about 20 years or more. Kinesio tape has been a very effective way to keep the triggers from forming.
If you have cervical instability, for the love of God, don’t go under the knife until you have considered alternatives. I had a renown Neurosurgeon who deals with EDS diagnose me with cervical instability in 2013 (incidentally, my PT and chiropractor had diagnosed me with that a while ago, but they didn’t make me go through the weight bearing MRIs #worstdayofmylifesofar). His only recommendation was to do surgery, where he would make an incision through the front of my throat and…STOP! You had me at cut my throat. NEXT! Seriously, though, people with connective tissue disorders don’t heal from surgery very well. I would have to be nearly paralyzed before I would consider cervical fusion. The rest of my vertebrae would soon start bending around the fused joint, causing me the same problem down the road. I have had two very esteemed Neurosurgeon since tell me that yes this is what would happen, and that I should consider this very carefully.
6. Spinal Headaches: these are horrible. This is where there is a leak or blockage of your spinal fluid, and there is not enough fluid in there to keep your brain in place. It sinks, pulling on the membranes that hold it in place, or a blockage can create pressure behind your eyeballs. #%^*& awful, right? There are many serious medical reasons why someone would have one of these bad boys. It can happen post surgery after having an epidural. I have seen that one first hand, and it was the most harrowing thing to drive that person to the ER. (A blood patch was the fix.) Another cause of chronic spinal headaches is a chiari malformation, which is a blockage in the spine that you are born with. This can be fixed by surgery, but the results are not 100%, and with all surgery (ON THE CENTRAL NERVOUS SYSTEM!) there are serious risks involved. I get these headaches every once in a while. My only solution is to take a hot shower, lie down with ice, and sleep. None of my rescue meds help it. I think I have a slight blockage in my spine due to EDS scoliosis, but a Neurosurgeon said he didn’t see it. (I think he is wrong.) It is no matter: I don’t want him to cut me anyway, which is the only thing he seems to be good for. If you have these types of headaches, I am so sorry, and I would love to hear what works for you.
7. Prolotherapy. If you have not heard of this procedure, well, I’m not surprised. You would either have to be a professional athlete, or someone like me who has “tried everything.” Prolotherapy is where a doctor (I would only let a doctor inject my cervical spine) injects sugar water into the loose ligament in order to make it irritated, so that it will naturally harden and “stabilize.” This has been used successfully with athletes who sprain a ligament one too many times, and with EDSers, who are full of loose ligaments. There is a new method which should be coming more into the mainstream: PRP therapy (platelet rich plasma). This is where, instead of sugar water, they inject your own separated platelets. It is supposedly much more effective, since you use your body to heal itself. I have just completed a series of three prolo sessions, but if I do it again, we will be doing PRP. I’m not going to lie to you, it’s a lot of shots. I took about 30 in the back of the head each time, and my amazing doctor, Dr. William Tham in Annapolis, MD, also did another 40 shots total in my elbows and ankles so I could save some money. Right now prolo is not covered by insurance, and it ran me $300 a session. In the end, this did not work for me, but it has definitely worked for some people.
8. Rhizotomy: After prolotherapy failed, my neurosurgeon suggested that we do a rhizotomy (nerve cauterization) as a safe alternative to surgery. I started by doing a local injection to see which disc in my cervical spine was causing my headaches. If it was at C1, then as they say in NY, fugetaboutit. Only fusion can correct that, and fusion is not recommended for hypermobile people unless as an absolute last resort. But anything at C2 and below, and you can green light this procedure. I was C1 and C4-5. Whew! So there was a chance that it would help at least some of my chronic headaches. And did it – I would say cauterizing the nerve cut them by about 75% for a year: life changing. I have to repeat the procedure after a year, which is not uncommon. We shall see how long term the results are after the second time (at the time of this post, I am due for that second procedure.)
If you don’t know what kind of a headache you have, seeing a physical therapist is a good way to start. Mine were able to identify on sight that my head fell forward, my neck muscles were webbed (the SCMs which go from the back of your head to the collar bone), and that I had limited range of motion when I moved my head and neck. They found the triggers in my neck that referred pain instantly into my eyes and head, and got to work teaching me many of the things I have just shared with you. Check out how I fixed my bad posture while driving.
If you suffer from chronic headaches…then my heart goes out to you. I have never felt like a worse wife/mother/relative/friend than during the years of pain that I have just endured. I try to keep my crabbiness in check, but it is damn hard. Forgive yourself. We are all doing the best we can, and when you live in crisis from blinding pain, you can’t put unreasonable expectations on your list. My children will survive this time. I had to parent from bed more times than I care to admit, but they have learned from me that self care is important, and also, they have experienced the joy of giving back to their Mom by taking care of me when I feel bad. As for any adults in my life that don’t understand what it’s like and get mad at me when I can’t deliver: that’s their problem. I can’t hold that guilt and get well.
This is by no means a complete list. There are some very complicated medical conditions out there that cause severe headaches. I would love to hear about your experience, and what has worked for you.