Headaches in your back of your head

Hi Everyone,
I am new to this website and glad that I found it. I have been having headaches in the back part of my head on the right side. Sometimes the muscles in my right side of my upper neck and head will be sore too. I have had them for years but they are getting more often and worse. Lately when I get a headache like that, I also have pressure in the back of my eyes. Nothing seems to help the pain. I've taken Tylenol and Motrin together . Tylenol with Tramadol (my pain med) and that didnt help either. After 2 days or so the headache will fade but Im still left with a pressure like feeling on the right back side of my head. I am guessing this is EDs related. Has anyone had these symptons or heard of this before? Any suggestion would be helpful. Thanks!

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19 replies. Join the discussion

Hi MsChris,

We are all different, of course, but I'm wondering if you have dysautonomia also (POTS)?

Depending on your symptoms, you may be a candidate for acetazolamide (Diamox) or Neptazane (if you're sensitive to sulpha). What were learning is that the majority of us who have an occipital headache, especially if it radiates down your neck to the tops of your shoulders may be CSF pressure on your brainstem. Diamox slows the production of CSF and is a mild diuretic and takes that away, literally overnight.

You can take a peek at this theory (recommended by Dr. Francomano -- keynote speaker at the EDNF meeting!) here (the video is an intro, but just below it is the paper. The references are all hyperlinked for you there.): http://bit.ly/mxT4hd

It was an incredible relief my my kids and I when we were able to take a pill to make that horrible symptom that we had for months go away so quickly. I was ready to have neck fusion or decapitation. It was horrible. I felt like I couldn't even hold up my own head. Is that what you are experiencing?

There are lots of different types of headaches, of course, but this is the first one I think of with EDS.

Big hug,

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Hi MsChris,

I think DrDiana hit on some very good points here. If you don't get everything you are looking for there don't hesitate to post again so that someone who may have missed your first post might see it the next time around. And, it does seem likely to be an EDS issue - or very easily tie-in with EDS.

Hugs,
Christi

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I would agree with DrD. It would seem to me to likely tie in to EDS in some way. I would start with the info provided and then explore the possibility of Chiari if no relief is brought from reducing CSF pressure and addressing any possible mastocytosis issues. I know in my case I have felt relief just from Zyrtec though.

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I get these headaches too. I had them so bad two weeks ago that I was vomiting from the pain. Drugs don't work for me with them, the only relief I get is from wearing a neck brace, or floating in hot water, which supports my neck and takes the pressure off the muscles, ligaments, tendons that are strained.

Sorry I can't be more help, but you have my complete understanding.

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Please look at my thread - EDS and suboccipital pain. I have the exact symptoms that you have. I have seen Dr. Henderson twice (neurosurgeon who knows a lot about EDS and our weird symptoms, etc). I get terrible pain in the back of my head, right at the base and deep inside there. It radiates into my ears, up to the top of my head and behind my eyes. Sometimes it's on the L side and somethimes it's on the R. My flex/ext MRIs a d CT scan ordered don't show a chiari or instability. I do have some fusion occurring at my skull indicating that I have excessive movement there. I'm waiting to hear back from Dr. H. to determine the next step for me. My balance has also deteriorated, I have hyperreflexia in my LE's, and loss of the gag reflex. It's so bad that I've had to go on disability which I greatly dislike. What have your doctors told you so far?

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I get these headaches, too. Going to see my chiropractor and having her adjust my occipitals has always helped me.

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My cousin has been doing exercises to strengthen her neck muscles. I'll see her in a couple of week and learn what exactly she does. She was diagnosed with chiari malformation a few years ago, and has been able to manage it through PT.

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I also have these headaches. An MRI showed cervical spondylosis, which is arthritis in my neck. Here are a list of symptoms from that, hope it helps.

Pain from cervical spondylosis can be mild to severe. It is sometimes worsened by looking up or down for a long time, or with activities such as driving or reading a book. It also feels better with rest or lying down.

Additional symptoms include:
•Neck pain and stiffness (may be worse with activity)
•Numbness and weakness in arms, hands, and fingers
•Trouble walking, loss of balance, or weakness in hands or legs
•Muscle spasms in neck and shoulders
•Headaches
•Grinding and popping sound/feeling in neck with movement

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I had those as well, but they seem to be improving as I am treated for Mast Cell Activation Disorder/Syndroms (MCAD/S) - mainly with anti-histamines and mast cell stabilizers.

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Thanks everyone for your replies.
Yes, Dr. Diana this does sound a lot what I have been feeling. Sometimes it hurts so much I feel like my head is going to explode. I had to look up a lot of the words you wrote ( dysautonism, POTS or CSF) because I have heard of those words before but never knew what they meant. I was diagnosed 8 yrs a go with HEDS but really didnt have any symtoms other than being flexible and a few headaches so I basically ignored that I had EDS and went on with my life. Once I hit 40 I started feeling worse, my mobility decreased, I'm having more dislocations and the sever headaches more often. These last 2 yrs have been rough. My family doctor and rhumatologists has never heard of this kind of headaches and said its probably just a migraine. I cant remember the medicine they gave me but it didnt help. Since I was having more dislocations and my mobility was going down hill, I knew I had to do something. So last year I went back to my rhumatologist and she basically said its EDS pain live with it. Thats when I decided to look for an EDS specilist. I found Dr Lavallee in South Bend and my first visit was in April of this year. I didnt think to ask him about my headaches. I was more interested in what was wrong with my hip and mobility (labral tear, bursitis and messed up I T band I found out) Since April, my headaches have gotten worse and more often. I didnt want to bug Dr Lavallee just in case my headaches had nothing to do with EDS. Now that I know it may , I'll make an apt to see him.
Again thanks everyone for all your replies/advice.
:) Chris

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Hi Starmoon,
How do I look at your post. I'm new to this site and havent figure out to view older post. I would love to look at the one you suggested.
Thanks
Chris

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Click on her name in the post above and then click on "More about me" in the list.

Then click on "Discussions" in the blue bar toward the top of that page. That should work. I'm new and learning this site now too

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This sound like the same type of headaches I get sometimes. I have been able to identify many different triggers, one of them being certain foods.

However, for me, this type of headache is usually due to having my C-1 or C-2 sublux either from jarring (such as a rough ride in a vehicle) or just from being more active than my body can truly handle, doing everyday things. I also get muscle knots in my neck on the side affected next to the cervical joint that is "out" and the pain across my shoulders and the result is usually a full-blown migraine/tension type headache.

I have been able to find an upper cervical chiropractor who helped me immensely for the first time after years of this type of headache, who I continue to see as needed (she is five hours away so it is a bit of a chore to get there on a regular basis). I can sometime adjust my own neck now, that is, if I can relieve the tight muscles first. My first line of attack is diclofenac gel 10 % on my neck and shoulders, a pain reliever with muscle relaxant and dimenhydrenate (if I have nausea) and heating pads for my neck and shoulders. If, after several courses of that, my neck is still "out", I resort to the migraine meds (one of the triptans) . If that doesn't work, and I just can't get my neck back "in" it's off to the upper cervical chiropractor. Relief often comes then within the hour. The relief from the migraine meds usually only last for a few hours, so that's why I suspect these are not your typical migraines.

I have also tried the Diamox (as described by Dr Diana). On occasion it has been helpful, so I am not sure if this is a different type of headache it is helping, or if the problem with the cervical instability and consequent subluxation is causing pressure on the blood vessels and brain stem resulting in a narrowing of the vertebral opening and subsequently fluid pressure in the brain. I do often feel that there is a pressure with the headaches.

So far I have not been able to find a doctor who is willing to do the proper diagnostic tests to investigate my headaches and am using trial and error to find out what works and what doesn't. (I found out about upper cervical chiropractic by my own internet research several years ago, and about the Diamox online as well. I had always suspected the my headaches originated in my neck area). My local family doctor has been very good about letting me try various drugs and about having me educate him about EDS. I live in a rather isolated community in Canada in a province that is rated close to the bottom of the list for its medical services with wait-times to see specialists of up to two years. I am just happy for now that I am able to finally get some relief, although it is sometimes up to three or four days before I can really get rid of it.

I hope you have or can find a good doctor who can get to the root cause of your headaches. In the meantime, hopefully some of this info will help you to get some relief or at least help you understand your headaches, either to rule out some of the causes or to identify them.

Wishing you many headache-free days!

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Thanks AatuTamaskan for telling how to get to the old post. It worked :)

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Hi Looseygoosey,

Your symptoms sound so similar to mine. Especially your comments about the jarring when in a car and the pressure you feel behind your eyes and also in your head. The back of my head gets so tender that it hurts to actually touch it with my finger!. It is difficult when you can't seem to get to the bottom of what exactly is going on. Have you had MRIs, CTs, etc? Good luck. I'm glad you have your chiropractor. Just be careful. Do you have any documented instability in your neck?

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Loosey goosey, Thanks for your reply too. I have had that happen before where one of my neck bones get out of place. Doesnt happen often though. Took me a whikle to figure it out but whenI did I felt better. I pushed on my neck and I could feel it pop back in. I got a bad neck headache with it too. I thougth thats where my headaches were coming from but now the headaches are more often and it doesnt feel like the bone is out of place. I havent been diagnosed with anything besides HEDS but I truly think I have other things going on too. ( dysautonomia or pots and maybe cranial instibility too ) Sounds like I better go back to the EDS specialist to find out whats going on. He is always so busy so thats why I didnt want to bug him if I didnt know. What do you need to diagnosed dysautonomia or the cranial instibility. I just had surgery on my hip and had CT and an MRI on it. I hate to have too many test done so soon. Radiation is not good.

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Hi MsChris,

So sorry you are having bad headaches. I've lived with them since I was 5! Mine were always diagnosed as "migraines" and treated as such until I was 34 (i'm 38 now) when I saw a Chiari Specialist. I was diagnosed with Chiari M1, Basilar Invagination, and EDS-Hypermobile/Classic (among other things). Dr. D is so correct - Diamox is great and can help tremendously with the pressure problem. You may need to also supplement with Potassium, but your own doctor can regulate that. Also - Elavil has helped me. I take a huge does (225 mg) daily, but it's necessary.

Good luck with your headaches!! I hope you find relief. :o)

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Another HA sufferer - all my life I called them ponytail headaches - outta nowhere at the base of my neck when wearing a light elastic band to hold long hair back. But they happen without hair being tied back. Once they get going - like now unfortunately - there's no real help. As a chronic pain patient - the normal meds I'm on don't affect this particular type of pain - dunno why. While told not to take NSAIDs d/t severe gerd things and 10+ yrs. with PPI's and still a red stomach on endoscopy - went against better judgement and took 2 Aleve. Surprisingly it offered some relief ... diagnostically I don't know if the nsaid helping points to a causation or not. The worst ones ever then leave the neck and base of head area - like now and creep up over the top of the head to the eyebrows.

Not fully POTS - I get dramatic rise in catecholamines with standing and and Increase in b/p... I get tachy if not on some heart med or another - but not usually over 140 - and not more than a 20 bpm increase with standing. I get dizzy and fainty like with standing for a prolonged period of time and must lay down. So I've been told I'm running at a high adrenergic state, have orthostatic intolerance - two rounds of dysautonomia testing of the brief Mayo type are pretty darn normal while on meds. How useful are they I wonder when nothing is tested with prolonged standing or postures - but just a minute or two. I do have wildly labile blood pressure - that's giving my neuro fits - we've tried different things - the latest Guanfacine ... ? My bp is hi then lo then hi then lo - all day long some days...had the 24 hour monitor thingy showed the same I guess.

Dunno about the whole hydrocephalus thing - I too saw Dr. F. H. who said my neck needs fusion 3 levels - but other docs say no not at all - then in the mean time you are left hanging - why am I with chronic fatigue, weak musculature, chronic pain, headaches, and in general just 'don't feel good at all'

Glad someone is continuing to turn over more rocks........as Dr. Diana..... It's hard when you have like 80% of a 'theory' live out - but then don't fit it all - like the MAST cell thing - l have had severe seasonal allergy times in life - odd itchy rashes in life - but go for years with normal skin findings etc.... Never know what's exercise induced - red arms from just walkig etc..

Oh well onward we go with gratitude for curious minds

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Hi Dr. Diana,
I havent went to my EDS specialist yet for my headaches. I am trying to get my hip better from my hip surgery I had before I go on to the next thing. In the mean time while waiting, I have developed more symptoms besides the pressure headaches. I am dizzy when I turn my head, double vision, shakey hands and I see flashing lights everyday in the afternoon/evening. I have had double vision for years now and wear prisms to correct them but the double vision has gotten way worse. I went up 3 1/2 prisms strength for a total of 7 1/2 strength if that makes sense. My optometrist thinks the double vision is EDS related but has no idea what is causing the flashing lights. He dilated my eyes to check for retina detachement but thats fine. He also says it sounds like an ocular migraine but I do not have the flashing lights all the time just in the afternoon and evening. Does this still sound like the dysautonomia you suggested? Its getting a bit scarey having all these symptoms and wondering?

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