Chronic Head Pain in EDS

This post was recently reviewed for accuracy and updated on 4/10/19

brain-pain-centerHead pain is an incredibly common problem for people with Ehlers-Danlos Syndrome. 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), 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), or medications. 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 address your pain.

First, if you aren’t familiar with each of these conditions and you both 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. 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.

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.

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 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 about mine.


Feels like: dull to 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 visual auras, light/glare sensitivity, sound sensitivity, nausea/vomiting and mood changes. I am told CM feels much the same way and I cannot guarantee that I have CCI as I haven’t found a doctor to properly test me, but I certainly have all the symptoms.

Treatments: Triptans work some of the time for these migraines, but you need a prescription. If a triptan doesn’t work, you can add a benedryl. I don’t know why it works exactly, but it helps. For prevention and treatment, the fasciablaster and neck therapy is the best thing I’ve found yet. There are also surgeries, preventative medications and treatments such as botox, topamax, Aimovig, Verapamil and many others that you could discuss with your physician, but healing the fascia and rebuilding the muscle to support your head and neck as well as possible should definitely be a first line defense. 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.


Feels like: all over/nebulous pain, 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.

Treatments: 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.


Feels like: Sharp shooting pain radiating from the top of the skull. I still get these from heat intolerance, even though I have my POTS well in hand. They hurt and they take a long time to resolve. Longterm untreated dysautonomia can also cause what is known as coat hanger headaches, as they cause the neck and shoulders to hurt as well as the head.

Treatments: I wish I had a fancy trick for these, but I don’t. You need plenty of electrolytes and to cool your head off. My best recommendation is a cold shower  and a liter of ice cold ORS followed up by a nap.

Of course the best way to treat any and all of these conditions is to know your enemy and proactively treat them. 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.

5 thoughts on “Chronic Head Pain in EDS

  1. I need this so much right now! I’m in so much pain! My neck is killing me and the worse it gets, the more nauseated I get. I have a skull fracture at the back of my head I’ve always attributed pain to. I trpurn left, nausea is worse and pain is worse, things get better if I reach back and click something near the top into place. The pain reaches around my head to my temples and my front teeth are numb, but I just vaped. My memory (short term) has been getting bad, too just the past few days. I have an appointment on June 8 and am trying to hold out until then. Is it just my back?

    Liked by 1 person

    1. Wow, you’ve got a lot going on, my dear! It seems quite likely that you may have some craniocervical instability and your fascia have been working overtime to try to hold things up, causing the chronic migraines you suffer from. It can cause all kinds of shoulder, back, and arm pain and numbness, and effect your digestion. I know from our discussions, you have at least some of these issues. Once the fascia become overloaded, it spreads further and further out, because they’re interconnected like a web throughout the body, like a kind of encasement. I would definitely talk to your neurologist about the possibility of CI and/or chiari if they haven’t evaluated you for it and I really think fascia therapy would be very beneficial for you regardless of the root cause. If you’d like, I’d be happy to send you an invite to the EDS and Fasciablasting group so you hear about others’ experiences. They’re a great group of people!

      Liked by 1 person

      1. I don’t think I have the energy to interact at the moment. I’m just crying. It hurts if I take the neck pillow off. I just don’t want to go to the ER, but that really is my only choice. But what can they do for me? I don’t know if I can spend five weeks like this.

        Liked by 1 person

        1. I’m sorry to hear you’re hurting so bad. I know what you mean about going to emergency. I never went because they were no help. I wish I lived close. I would come do a treatment on you and see if we could get you some relief.I will send you an invite. It may take a few days to get approved, anyway. I guess we’ve been getting a lot of requests! Check your other inbox for an email from the admin. I know there are massage therapists that specialize in fascia therapy. Maybe that would be an avenue to explore? You might even find someone who will come to you.

          Liked by 1 person

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