Headaches and EDS – Common and Painful

Jun 24, 2022 | Samantha Campbell | @samanthacmaa | Comments (12)

Many patients (in some studies over 70%) with EDS develop chronic daily headache (CDH) or headaches more than 15 days per month. Many also reach the criteria for chronic migraine.  The question is how much their hEDS/HSD is playing a role in their daily headache pathogenesis. Many patients with hypermobility/EDS have migraines, but in many the reason they chronify to CDH is because of the upper cervical facet and even neck bone (C1-2) irritation they have developed from their hypermobility syndrome, plus/minus any past head or neck traumas (including intubations for surgery), which exacerbates this inflammation. The trigeminal nerve which is the main cranial nerve which causes head pain has its primary nucleus within the brainstem and upper cervical spine (c2) - called the “Trigemino-Cervical Complex”. Thus, anything irritating the upper cervical spine can cause a headache including a migraine-like headache. hEDS/HSD patients are also more at risk for spinal fluid leaks, Chiari malformations and arterial dissections which can also cause daily headache issues. Finally, they may also be hyperimmune so they can develop worsening head pain syndromes after viral infections, vaccines and during times of high stress.  A complete evaluation for underlying secondary causes of headache is necessary for EDS patients and this can include a brain MRI with contrast and imaging of the brain and neck vessels. Fortunately, here at Mayo Clinic we have a Headache Clinic as a resource for our EDS Clinic consisting of a team of expert neurologists experienced in managing all types of headaches in patients with hEDS/EDS. So, talk to your doctor, see if you need further evaluation of your headaches. It may save you a great deal of pain.

Do you suffer from Headaches? What has your experience been like? Share in the comment section below!

Author: Todd Rozen, MD

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I have EDS hypermobility syndrome diagnosed in 1986. I started having headaches about a year ago. I only take motrin and not too often because I have kidney issues. I see a DO DR who does gentle OMT's to relax my muscles as I also have ms, & back problems. I have many health issues but am not depressed, lots of syndromes plus fibro, chronic pain. I don't complain, I just deal with it. I told my primary about the headaches, she didn't mention the eds. But at least I now know why. I also have sjogrens & have lost most of my teeth so thought the headaches were from that. Is there anything my DO Dr can do when she does the OMT's as she gently relaxes my neck because of my back pain?

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@anniemaggie

I have EDS hypermobility syndrome diagnosed in 1986. I started having headaches about a year ago. I only take motrin and not too often because I have kidney issues. I see a DO DR who does gentle OMT's to relax my muscles as I also have ms, & back problems. I have many health issues but am not depressed, lots of syndromes plus fibro, chronic pain. I don't complain, I just deal with it. I told my primary about the headaches, she didn't mention the eds. But at least I now know why. I also have sjogrens & have lost most of my teeth so thought the headaches were from that. Is there anything my DO Dr can do when she does the OMT's as she gently relaxes my neck because of my back pain?

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Hi Kay, it's a challenge managing multiple conditions, especially when treatments, like pain relief, are contraindicated. Having followed your posts in the Connect community, I have to agree with your statements "I have many health issues but am not depressed…. I don't complain, I just deal with it." I admire your acceptance and resolve.

Can you attribute the new symptom of headache to anything in particular? Does the osteopathic manipulation treatment (OMT) help?

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I have terrible low back pain mainly on my left side, vertebrae issues. spondylitis, small curvature, Shots were unable to help including 8 at one time. One odd thing I was lying for 30 years only on my forearms. No dermatologists could tell !e why. I finally found out why last year on this site when I found it. I was itching til I bled, all scars in 2000 begged a Dr for something and she prescribed hydroxyzine. That has really saved me. One of my Drs suggested Aspercreme, that helped too because when I found on this site that I have lots of company. Brachioradial Pruritis. Not itching, but pain! I told my primary she said a pinched nerve. Its related to cervical vertebra issues. The OMT'S have saved me, she barely moves my arms and legs, she only does this for about 15 minutes. I had massages for years and waste of money. Insurance pays. She always asks if she can work where she sees issues, like she will say my pelvis is out of whack! Last time just my left side. Anyways she un pinched a nerve in my neck not realizing at the time, and the next day no more itching. I walk out feeling like I had a massage. Yrs ago I had one that was not gentle, & I could barely move. No one in my family had anything, I got everything, it's interesting, last month I had low sodium in hospital.

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The headaches seems to be on my right side of my face from my nose to my forehead, usually in the evening. My mouth always hurts, I attribute that to losing almost all my teeth from sjogrens, only 5 left, fighting to keep those, losing battle! I had 8 removed bad mistake for dentures that I couldn't wear. I have one implant. I have never had headaches, I just don't get them. Some things are just fine, my heart is in great shape so will be around along time.

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The reason I wrote is because I saw on the EDS hypermobility page that headaches are a part of the problem. I didn't know that. So I guess I am attributing the headaches to that. I don't get them every day. I stream a lot on my tablet & if I get headaches I use the tv instead.

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I am 34 years old, and I have had over 20 surgeries already and the last bunch have been on the left side of my skull since my first brain bleed in 2016. A year after they put the bone flap back in my head the flap had to be removed because MRSA infected the flap. Three months later a new artificial flap was put in my akull and within a year a different bacterial infection caused the flap to be removed. Three months later another artificial bone flap was inserted in my head and a year later another bacterial infection forced the bone flap to be removed a third time. I currently wear a helmet to protect the left side of my brain. Last month I had a second brain bleed, but no surgery was done that time. Doctors think I might have bumped the side of my head with no flap causing the bleed. They took away my baby aspirin I was taking for my pig valve in my heart to stop the bleed. Unfortunately, her right arm and hand stopped working and the right side of my face is still numb. I am getting PT, OT, and ST to help me recover from my latest issue.

I am looking for a second opinion from the Mayo Clinic on why my bone flaps continue to be infected by bacterial infections because I don't want to wear a helmet the rest of my life. I also don't want any more brain bleeds. Thanks Michelle Bahl

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@anniemaggie

The reason I wrote is because I saw on the EDS hypermobility page that headaches are a part of the problem. I didn't know that. So I guess I am attributing the headaches to that. I don't get them every day. I stream a lot on my tablet & if I get headaches I use the tv instead.

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Kay, I'm thrilled that this blog shed some light on possible reasons for your headaches.

I checked with the EDS care team at Mayo Clinic and Dr. Knight confirms that:
"Osteopathic manipulative therapy (OMT) and manual therapy can be very helpful for a number of conditions related to headaches. Not only muscle strain reducing, but also helpful for certain types of headaches linked to back or neck pain conditions, called “cervicogenic headaches”. Just remember though, as Dr. Rozen pointed out in this post, there are a few other causes that can be contributing. Keep these in mind if OMT is not working. Let your doctor know about your EDS diagnosis, and see if a consultation with a neurologist specializing in headaches may be needed."

Hi @michelle12 and welcome to Mayo Clinic Connect and EDS blog. It sounds like you've had some particularly rough times with the bone flaps and reinfection. This is a situation worthy of further investigation and Mayo Clinic often provides second opinions in complex medical matters such as this. I encourage you to request an appointment with the EDS Specialty Clinic at Mayo Clinic in Florida.

Here's the link to the request an appointment form to get you started. You fill out the form and a Mayo Clinic to arrange a phone call to get more details from you and schedule you with the right specialist, etc. http://mayocl.in/1mtmR63

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She is aware of my EDS, I have an extensive list, all my Drs freak out when they see me in the ER but so far I recover fast. Especially my feet from falling so much. I have learned to distinguish the different falls, from MS not so much use a walker or scooter at grocery store. But also a torn acl tear he never fixed as my husband just died& I had no one to stay with me. That was in 08. My left side body is sore from all the MS falls of past. The eds falls I know when those happen. Then my Neuro prescribed the wrong meds for my essential tremors, propanolol,. Which caused my blood pressure to drop. She never told me. I kept falling, 5 times one night 911 aides thought I was on something! This was going on for a yr. Finally a hospital Dr took me off of all that meds, haven't fallen since.

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@colleenyoung

Kay, I'm thrilled that this blog shed some light on possible reasons for your headaches.

I checked with the EDS care team at Mayo Clinic and Dr. Knight confirms that:
"Osteopathic manipulative therapy (OMT) and manual therapy can be very helpful for a number of conditions related to headaches. Not only muscle strain reducing, but also helpful for certain types of headaches linked to back or neck pain conditions, called “cervicogenic headaches”. Just remember though, as Dr. Rozen pointed out in this post, there are a few other causes that can be contributing. Keep these in mind if OMT is not working. Let your doctor know about your EDS diagnosis, and see if a consultation with a neurologist specializing in headaches may be needed."

Hi @michelle12 and welcome to Mayo Clinic Connect and EDS blog. It sounds like you've had some particularly rough times with the bone flaps and reinfection. This is a situation worthy of further investigation and Mayo Clinic often provides second opinions in complex medical matters such as this. I encourage you to request an appointment with the EDS Specialty Clinic at Mayo Clinic in Florida.

Here's the link to the request an appointment form to get you started. You fill out the form and a Mayo Clinic to arrange a phone call to get more details from you and schedule you with the right specialist, etc. http://mayocl.in/1mtmR63

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Thanks for the information to get started but since I live in Wisconsin it would be much easier to go to the Mayo Clinic in Rochester Minnesota. I had four of my heart surgeries there when I was younger, but the surgeon retired so my last heart surgery was at Childrens Hospital in Milwaukee. Can I assume there is an EDS Specialty Clinic at the Mayo Clinic in Rochester Minnesota?

Thanks

Michelle Bahl

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@michelle12

Thanks for the information to get started but since I live in Wisconsin it would be much easier to go to the Mayo Clinic in Rochester Minnesota. I had four of my heart surgeries there when I was younger, but the surgeon retired so my last heart surgery was at Childrens Hospital in Milwaukee. Can I assume there is an EDS Specialty Clinic at the Mayo Clinic in Rochester Minnesota?

Thanks

Michelle Bahl

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Hi Michelle,
Apologies for the delay in replying. Yes, EDS is treated at Mayo Clinic in Rochester, MN by a specialized team as well. The link I provided offers contact information for all Mayo Clinic locations. I’m sure you’ve submitted the request by now, but just in case here’s the link with the info, phone numbers and the online form http://mayocl.in/1mtmR63

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