Headaches headaches and more headaches

Such a big feeling that comes with having children with EDS is helplessness. Sometimes when one of my kids have a symptom I feel like I am in a dark room, the answer is right in front of me but I am grasping in the dark. My 17yr old has been having headaches for a very long time now. Sometimes they are in her temples but more often they are in the base of her neck. At one time a chiropractor took an x ray and told us that her neck is broom stick straight. I feel like that is the connection but I don't know what can be done about that, nor do I know which type of Dr to pursue this with. Does anyone have a direction to put me in?

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If her neck is that straight the first thing that is probably happening is that her neck muscles are probably in constant spasm like mine are/were. I found A LOT of relief by going to a physical therapist who knows how to release those spasms using craniosacral massage, myofascial therapy, and trigger point release. A massage therapist trained in trigger point release could also be a big help to your daughter. I would look for a PT who works and knows how to release muscles that have been in spasm for a long time.
I still get some of my other types of headache (pressure from high CSF), migraines, and every once in a while tension but my PT has REALLY saved me from being a lot worse off that I would be.

There are lots of other reasons your daughter could be having bad headaches, but a straight neck is often caused by muscles in spasm I'm told. Neck might not ever get it's curve back, but a good PT will help release the spasms (which will return blood flow to those muscles) and will help work with your daughter on posture to help keep headaches at bay as much as possible.

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I agree with Palamino.
Some additional thoughts; The key to working with any chiropractor/osteopath or PT if one has EDS is to tell the chiro that NO HVLA (high velocity low amplitude) work can be done because of the hyper mobility. Cold laser is excellent for releasing the spasms. So are some forms of acupuncture. My finding (having gone to work for five years with shocking migraines from hyper mobility following aneurysm surgery) is that a combination of work is the best--if all is good. A good massage therapist to release upper back spasms (that come from trying to keep the neck stable), PT using the kinds of techniques palomino suggested, a chiro who uses no HVLA and only uses gentle releases based on soft tissue, acupuncture. All that plus your daughter's learning how to do some deep relaxation/biofeedback NOW to begin to feel some efficacy HERSELF about interventions.
Is she working with her computer in the right position? she should have a laptop and be sitting with back and neck and arms supported, not sitting at a desktop model: hell on the neck.

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You should see if there is any headache specialist in the hospital you take her too. My husband who has EDS III and suffers from headaches goes to Roosevelt Hospital Headache Institute in NY. His doctor seems to work well with him although he was just diagnosed last week (offically).

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Anytime I've had an x-ray of my neck, it shows "straightening". Like PalaminoMorgan said, it's usually from the muscles being in constant spasm. Maybe she needs an MRI to see if there is damage. Maybe see someone who specializes in the spine, who at least knows what EDS is. Good luck. I feel for her. Head and neck pain is just awful.


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Thank you everyone. I now feel better equipped to discuss with the pediatrician. That is why these boards are my "go to" when I feel alone in this and so scared. You guys always come through with good info and encouragement. How great is that and to think, you dont even know me or know that my daughter wonderful and beautiful and smart and funny, and like every single EDSer out there doesn't deserve any of this. Thank you for your help. It means so much more than you can ever know. You guys are very special.

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I have the same issues! My chiropractor has definitely been a help and one thing that he suggested that seemed to really help me was changing my sleeping position. I've always been a side sleeper with one arm under my pillow. When I use a contoured pillow and sleep on my back I feel the best, but even just making sure my arms down by my side has seemed to really help. He's also given me stretches to help with the muscle tension. I hope that you guys find something to help!

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I have been plagued with debilitating headaches for years. I agree that PT is the best and safest route to go. Chiropractors can inadvertently cause damage, especially if they don't know about EDS or don't understand it when their adjustments don't last through you getting off the table. My headaches sound VERY much like what your daughter suffers. I have lots of other neurological symptoms to go with. I've done some surgeries to try to deal with atlantoaxial instability and jaw joint dislocations. Both were mistakes for me. I've also taken all migraine meds on the market, as I was misdiagnosed with migraines for years.

I really wish I had an easy answer for you. I can only tell you what makes me feel better: when people believe me about how hideous the pain is, and when my family stays supportive even though it's gone on for days and days. It's hard not to let your eyes glaze over, or tune out when someone you love is in pain a lot, can't do the things you've planned, etc. But it feels very supportive when my hubby and son don't hold that stuff against me and a simple "I'm sorry you're in pain" makes me feel loved and supported.

I have nieces who have severe headaches, and too often some of their family respond with disbelief, or maybe just emotional exhaustion from the constant pressure of living with chronic illness. It makes the girls feel disrespected.

As you're a mom, and I am as well, I know you'd like an easy intervention that you can help with. Ice helps me. I use a tube sock, fill it with ice, and tie it around my head while resting with the lights out. I also ice the base of my skull. It also helps when my husband or son gently rub my head of my feet when the headache is awful. It doesn't cure the headache, but their kindness speaks volumes: I'm loved, and I'm not in this alone. It gives me the strength to keep going forward with a smile.

Best of luck to you and your daughter.

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I have the same issue. One doctor told me that I have "soldier's" neck. It is also pulled straight and I suffer constantly from muscle spasms. The pain is the worst at the base of my neck which radiates to a headache. I'm still trying to find the best solution as I've had this for 22 years. So, hopefully, I will learn something from your post too!

A couple of things that I can tell you that didn't work for me: PNS trial implant on the ocipital nerve. This device was implanted under my skin in the back of my head. I had wires coming out that lead to a device that I could control to try to stimulate the nerve to stop the pain. It just felt like a bee was buzzing in my head. Second; Botox. I just went through my second trial of this two weeks ago. Now, it's even more difficult for me to hold my head up. I spent yesterday in the ER with morphine. The doctor wanted to admit me, but I declined. I even pulled my own IV out because I couldn't get the nurse to see me (I've been so many times that I knew what to do). Ironically, I also have a 17 year-old daughter who, I believe, has EDS too. She was just fused in her spine from T9 to L3 this summer from progressive scoliosis. She has yet to experience neck pain. I'm praying she never will.

I feel so badly for you and your daughter. I hope that you will continue to find comfort here from people who understand what you're going through. Big hugs to you.

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I love my chiropractor. She is very gentle with the EDSers in my family and provides real relief for some of their symptoms.

My 12YO had debilitating headaches when she was in the 3rd grade, before we determined that she does have EDS. We eventually tried an elimination diet which cleared her headaches within a week (we were expecting up to 6 weeks to see if there was any effect) and we were able to add back everything except wheat.

Eliminating the wheat also made her asthma go away. We were able to stop the daily preventative steroidal inhaler that she had been using since age 4.

My 9YO spent the summer at the adolescent pain management program at the RIC. It was miraculous. Got her out of a wheelchair and functioning pretty well again. I totally owe her current quality of life to them, and I am grateful. http://www.ric.org/conditions/chronicpain/adolescentpain.aspx

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There is a neurologic problem that is often connected with EDS, especially EDS patients who have chronic headaches. It may not be caught on regular x-ray though...needs to be CAT scanned, so the soft tissues can be seen very clearly. Can't remember the name of the problem, but it's something like the bottom of the brain slipping down into the top of the spinal canal. VERY SERIOUS problem, and the first, most common symptom is chronic headaches, IN THAT AREA OF THE HEAD/NECK. There is another name for it, called TETHERED CORD. There is a group of people who have a page on facebook, who all have it, and they would be able to answer all your questions. I'll look up the technical name, and get right back to you, so you can find the group on facebook.com. I would start there, and also make an appt with a neurologist or neurosurgeon, so he may rule it out or find it, and tell you what he recommends. I don't have it...I was about to tell you about a very successful, NATURAL headache, migraine reliever that some EDS-ers have been happy with so far. My pain doc is a migraine sufferer and uses this product, WITH AWESOME SUCCESS!! I'll go now and get the info on the neuro problem, and get right back to you. Hang in there!

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OK...I'm back. The technical name for that neurologic problem is CHIARI (kee-ah-ree) MALFORMATION. I just looked it up, and it is related to EDS...those patients can have Chiari, due to our tissues being so soft...not strong enough to stay where they belong. Anyway, my advice, in addiction to making an appt to see if a doctor thinks the same thing, is going onto facebook.com, and then writing CHIARI MALFORMATION in the search box. There is at least one group, and the leader, the person who started it is a very nice lady, chiari patient, who is very organized, tries to know everyone who signs into her group. The group is VERY helpful, warm, caring, compassionate. They will be able to answer all kinds of questions, and maybe even lead you to a doctor in your area, if someone else lives in your area too. There are more than you imagine...so don't fret, thinking you're alone...YOU AREN'T. My best wishes go with you in your search of diagnosis and treatment for your son(s). God bless!! PLEASE, CONTACT THAT GROUP...they will jump at the chance to help you in any way they can!! I would too, but you now know as much as I do, because I don't have the problem. I have EDS, but have no headache issues. God's blessings go with you!!

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PS- Just saw where you live. You couldn't be in a better part of the country for the best healthcare. The top docs and hospitals in the country are right up there where you are. I would choose Johns Hopkins, but that's traveling a little, to Baltimore. But New York also has VERY GOOD docs and hospitals...some of the best in the country. You'll be in good hands. I happen to know of one geneticist at Johns Hopkins hospital who is also very well versed in EDS, so incase you DO want to go to Johns Hopkins, they have at least one top doctor who is well-suited to help you. But I know that NY is also a TOP medical state, with many superior docs and terrific hospitals, esp. connected with the big universities. Best of everything to you again. God be with you!!

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After all this time I've never been checked for this malformation. I've had MRI's with contrast and x-rays over the years but nothing has ever shown up. I've not had a CAT scan. I'm going to ask my doc for it! Thank you. Also, I live in Arizona; the U of A has a great medical department but they are known for other things (they are the team that saved our Senator, Gabby Giffords, who was shot in the head this past January - a true miracle). So, it looks like I might have to travel if I want to get good medical care.

Everyone here is just wonderful. I'm new to the site and I've already received so many good ideas and support. My husband said that my demeanor was so much better today and I attribute it to the time I've spent on this site this week. He told me that I should start my own blog and I agreed. So, we're going to work on getting a laptop for me so I can communicate from my reclining chair, rather than this uncomfortable desktop. We'll fit it into our budget in the next two months. Yay!

Huge gentle hugs to all the headache sufferers out there.

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I have Chiari as does one of my sons; the other son has brain sitting right on the forum magnum. you need an MRI to diagnose, not CT scan. Preferably a CINE-MRI which is a flow study that watches how the spinal fluid flows through the forum magnum (base of skull). Mine shows my chiari is more on the right than left and flow is more restricted there. I had complained of leg tingling on the left for 2 decades prior, and could see my pulse in my left eye. right side of brain controls left side of body. right-sided chairi causes left-sided symptoms. they try to tell me my chiari is asymptomatic and I tell them "as the captain of this body I know it is not asymptomatic; I had symptoms for a very long time before my diagnosis." I get migraines and headaches in the base of my skull. Also have chronic vertigo. I have been told surgery would make me worse, not better, so I have not done it. Apparently my neck issues are worse than my chiari and fixing the chiari would make my neck even worse....

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I agree, I would definitely research Chiari Malformations (type 1). I have it and I know more than one person who has both Chiari and EDS. Chiari can only be diganosed with an MRI. Preferably a standing MRI and a CINE MRI. The most common symptom is headaches in the base of the neck caused from a blockage of the Cerebral Spinal Fluid. Please be aware that Chiari is not very common and many doctors can miss this on the MRI unless specifically looking for it. Best of luck to you.

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