Originally written in 2017, I decided to do a major overhaul and republication to include new forms of head pain I have experienced and discussed since the original post was written. I hope it helps bring relief to others struggling with the many forms of head pain associated with Ehlers-Danlos Sydrome and it’s close comorbid cousin, fibromyalgia.
Head pain is an incredibly common problem for people with Ehlers-Danlos Syndrome and/or fibromyalgia. I have struggled with head pain for so many years that I found it almost impossible to accurately identify where it hurt whenever I was examined by a neurologist. My head hurt everywhere, all the time, though I would often experience sharp, shooting pain or more focused pain in certain areas at times.
It wasn’t until I began to resolve some of my issues that I was able to begin to understand the different types of headaches I was experiencing and their possible causes. In large part, these revelations came on the heels of major dietary changes, written about in this article, and fascia treatments, which I talk about here and will be sharing some more about in this article, today.
To the best of my knowledge, most head pain in relation to EDS occurs because of Chiari malformation (CM) or Craniocervical Instability(CCI), Temporomandibular Joint Disorder (TMJD), or another connective tissue/joint issue that causes neuralgia (such as occipital neuralgia, Mast Cell Activation Syndrome (MCAS) or another allergy or intolerance issue, orthostatic intolerance (OI), medication overuse, CFS leak or Intracranial Hypertension and migraine. The more of these conditions you have, the harder it is to sus out what’s going on and it’s very important to address each and every problem in order to get your pain under control.
First, if you aren’t familiar with each of these conditions and you have EDS and suffer from chronic head pain, get familiar with them now. They can cause a wide variety of symptoms that can wreak havoc on your health and well-being and if you have any one of them, depending on the severity, some may require surgical intervention, physical therapy and/or bracing.
Also, in some cases, one condition can cause another, such as CCI or CM can lead to developing OI, CFS leak or Intracranial Hypertension. Also, any one of the connective tissue issues like CCI, CM or TMJD can lead to trigeminal or occipital neuralgia; chronic nerve pain in the head and face. Of course it doesn’t usually stop there, causing problems with the neck, shouders, arms, chest and back. If severe enough, it can even cause digestive and whole body issues. There is no end to the problems CCI and CM can cause because of its ability to alter the autonomic system.
My Journey with Head Pain
I’ve gone through many different therapies on my neck, some with varying degrees of success, but none completely effective. Laying in bed seemed the only thing that provided me relief from the worst of my head pain, my glare and sound sensitivity, and even that was no guarantee.
Then I changed my diet and finally started eating chemical-free foods and figured out to what I’m allergic and intolerant and that I probably have MCAS and eliminated everything that was triggering me that I could. Yet more of my head pain cleared, along with many of my lifelong chronic sinus and respiratory problems.
I finally got a vascular specialist who put me first on midodrine and then florinef to at last get my POTS well controlled while simultaneously weening myself from some of the drugs I was taking to prevent the constant muscle spasms, cramps, and joint pain. Again, this meant less head pain.
But no matter what I did, I couldn’t get these vice like tension headaches to go away. These are headaches toward the back of my head and along the sides. They cause my head to feel heavy and my neck always tired and tight. I couldn’t wait to lay down.
Over the last few months of doing the migraine series with the FasciaBlaster not only did the heaviness of my head and my neck pain begin to subside, so did my head pain, little by little, until one day I actually had a completely head pain free day and then another and another.
At first, I thought I had developed a cerebral-spinal fluid(CFS) leak and it was taking the pressure off of my overtaxed brain, but after several weeks with many pain-free days mixed with some that weren’t so lucky, I have come to see that it was the FasciaBlaster migraine series that finally did the trick.
I’m not honestly sure how long I’ve been doing the migraine series with dedication, so I can’t give you a ballpark on how long it might take you to get relief. Besides we’re all different. I can say that moving toward doing my head every 1-2 days has brought further improvements and now that they are mostly under control, I can do the entire migraine series once a week, my head twice a week and I’m pretty much good to go. Since Ashley Black removed the protocol from her webiste, I’m planning on creating my own guide soon.
If I do experience any break through neuralgia, I simply get out my blaster, blast my head (dry works just fine for me) for 5 minutes and it clears up the headache completely about 90% of the time. The rest of the time, it’s brought the pain to a low enough level that I still don’t feel the need to take a triptan.
This may sound a bit odd, but one of the benefits to having those unending migraines gone is that I can now tell when something else is giving me a headache, making it much easier to identify when something is aggravating my MCAS or POTS. Before it was anyone’s guess as to whether I was sitting up too long, if I ate the wrong thing, if some scent might be a problem (I’m allergic to most synthetic scents), or if my blood pressure had dropped too low. Now, I can more easily monitor the rest of my health and that’s very valuable to figuring out how to control and improve all of my comorbid conditions.
Identifying the Source of Your Head Pain and How to Treat It
In order to help you identify the type of head pain you’re experiencing, here’s a few tips for identifying and treating them based on my own experiences. Remember, every patient can be different and ultimately the treatments you choose should be made in consultation with the doctors on your care team.
Chiari Malformation and Craniocervical Instability
This type of head pain is complex. It can be a dull or sharp burning pain in the neck, back of the head, sides (around the ears) and to a lesser extent in the temples. While the pain radiates from the neck and the back of the head, it extends up toward the face, but tends to stop there, even if the numbness doesn’t. It can however, create tension in the entire head and neck area, so they can begin to hurt and these areas benefit from massage or fascia work. They can be accompanied by weakness in the head and neck (a heavy-feeling head), visual auras, light/glare sensitivity, sound sensitivity, nausea/vomiting and mood changes. These headaches can also be accompanied by neurological symptoms such as slurred speech, tremors, parasthesias, numbness and more.
For prevention and treatment of CM and CCI, the fasciablaster and neck therapy is the best thing I’ve found for natural improvement and some are having great success with Atlas Orthogonal Chiropractic. There are also surgeries, preventative medications and treatments such as botox, and many others that you could discuss with your physician. Be sure to weigh the risks of each treatment carefully.
Surgery (fusion of the head and neck) is possible, but the success rates aren’t great and post-operative quality of life is often diminished. Once the surgeries begin there’s no going back and while it can improve some symptoms, it can make others worse. These are incredibly difficult conditions to treat. This is why my primary recommendation is a program like the FasciaBlaster migraine series or another route of physical therapy.
Unfortunately, if you have a Chiari malformation or Cerebrospinal fluid leak, fasciablasting probably isn’t going to resolve these or high pressure problems related to these conditions and Ideopathic Intracranial hypertension. I’m not going to cover chiari in this article. It’s simply too complex to cover in a brief article like this one and I don’t have enough experience with it to offer any personal insights.
There are many types of migraine and they can affect each person differently. Rather than outline information about each, we’ll talk a little about how to identify a migraine. Migraine pain usually has a focal point in either the left or right hemisphere of the brain, usually somewhere behind one eye or the other. Migraine can come with or without aura, which can look like flashing lights, have brilliant designs that overtake your field of vision or can be black and appear to block out all or a portion of your vision. Migraine can last for a few hours to days. When they last for days, they are known as intractable migraine. Migraines can cause nausea and vomiting, fatigue, memory loss, confusion, and numbness. Hemiplegic migraines can even cause stroke like symptoms, so it’s important to be examined when they occur to rule out stroke.
it’s important to know that lifestyle can play as much of a role in migraine as mechanics. Sometimes adjusting diet or medications can help. Migraines are still largely a mystery. It is not clearly understood whether they signal or cause damage and whether or not they may lead to other neurological disorders.
Choosing prevention of migraines before they start is the preferred approach among many neurologists, rather than simply treating the pain once it’s set in. There are many drugs used in the fight against migraine, but it’s not always clear why they work and they often need adjusted for people with chronic or intractable migraine. It’s important to work with a neurologist to find the best solutions for your symptoms. There is no cure for migraine.
CFS Leak and Intracranial Hypertension
Cerebrospinal fluid leaks are fairly common in EDS and can occur with or without CCI/CM. Leaks and their counterpart, intracranial hypertension can bring about the same symptoms and one can lead to the other, as sometimes once the leak stops, CFS fluid can build up and cause immense pressure inside the skull. While fluid leaking from the ears or nose can be an indication of CFS leak, both conditions are usually accompanied by terrible headaches that change based on positioning. IH can cause the head to feel under pressure, affect hearing and feel like a big build up of pressure in the eustasian tubes and can even affect eye sight. You can learn more about these conditions and spinal taps here.
These headaches can be somewhat cmplex and vary in feeling. Often, they feel like an all over/nebulous, dull ache. If respiratory in nature, it can bring on nasal congestion and pain in the sinuses, but often, it’s just a general ache. Usually, if it’s related to allergies/MCAS, it’s accompanied by joint pain, digestive issues such as bloating, inflammation and diarrhea.
MCAS is a complex disorder and treating the resulting headache really isn’t enough, but if you find yourself in a flare with a headache, try some zyrtec, zantac, and benedryl with either some advil, tylenol or aspirin, depending on your tolerance. For a full list of medicines used to treat mast cell activation disorders, click here.
Dysautonomic Coat Hanger Headaches
These headaches cause sharp shooting pain radiating from the top of the skull. with frequent neck and shoulder pain and stiffness. I still get these when I trigger my heat intolerance, even though I have my POTS well in hand. They hurt and they take a long time to resolve.
The best way to prevent these symptoms is obviously to treat your dysautonomia through exercise, diet, sufficient fluid and mineral intake and if necessary, medication. To treat a rare onset, usually due to hydration and/or getting overheated, you need to drink plenty of electrolytes and to cool your head off. My best recommendation is a tepid to cold shower or bath and a liter of ice cold ORS followed up by a nap. Ice packs on the top and back of the head and neck are pretty effective, as well.
TMJD and Tension Headaches
Temporomandibular joint dysfunction is very common in EDS and is believed to be caused by the load our tempormandibular joints (the joint which joins the jaw to the skull at either side of the head) take through eating, and talking. Generally, with TMJD, there will be popping in the affected joint, as it dislocates and relocates. Fasciablasting and other forms of myofascial massage are very helpful in TMJD.
Tension headaches can happen both with and without TMJD, but they’re related. Most likely, the joint dysfunction will cause trigemenal neuralgia, a form of chronic pain at the temples and forehead. myofascial massage can also be instrumental in clearing this type of head pain. Night guards, which help to stabilize the jaw and prevent grinding in your sleep (which can put an incredible strain on the TMJ and create neuralgia, as well) and keep your jaw properly aligned.
It’s very easy for the pressure of my pillow to push my jaw out, so either a brace or modifying how you lay can be quite helpful in creating greater stability.
Believe it or not, the overuse of pain medications can and will trigger a headache or migraine. I didn’t believe it myself until my neurologist enrolled me in a medication overuse study. As it turns out, there’s a reason triptans and other pain relievers (even advil or tylernol) have limits of use and overuse headache is one of them. If you’re taking a lot of pain relievers in any category, it pays to work for alternative solutions and prevention over treatment.
After going through this study, I don’t even use triptans anymore and rarely ever get migraines unless I’ve completely neglected my care or come to deal with inflammation caused by a virus or mechanical reinjury to my head or neck. If you’re relying too much on pain medications, it’s important to work with your doctor to stop the cycle of pain and find alternative forms of managing that pain. If you’d like to know more, take a look at this post on medication overuse. Who knows, the trial might even still be ongoing.
The best way to treat any and all of these conditions is to know your enemy and proactively treat it as naturally as possible to avoid other complications and side effects. In other words, if you know you have POTS and heat intolerance, stay on a good treatment plan with your doctor, do your best to stay out of the sun and drink plenty of electrolytes when you know you’re going to be out. Part of being proactive is also making sure you have everything you need when you leave the house; medications, ORS packets, assistance devices, etc. It’s a pain in the ass, but waiting an hour to take a triptan can mean the difference between a close brush with a migraine and 3 days of trying to get them back under control.