Chiari Malformation vs Tension Headache

Hello all!

I’m at the end of a very difficult week. On Wednesday I was advised by my family doctor to go directly to the nearest ER after I described my symptoms over the phone. I woke up after a nap on Tuesday afternoon, and felt intense pain at my Foramen magnum (base of the skull) and down to both shoulders and shoulder blades, plus throughout the length of the cervical spine and upper thoracic spine. They did a CT on me and the doctor said it was a tension headache. Then gave me tramadol that doesn’t work. I’m still in intense pain, and unfortunately can’t bring the scan with me to my appointment with my new LLMD (who wants to see it) next Tuesday.

When I have tension headaches, they’re always at the side of each temple. Can this actually be a long term tension headache in an area I’ve never had one, or could it be a Chiari Malformation?

Hoping that those with Chiari Malformation chime in. Thank you

straydog said...
Sorry to read about what you are dealing with. Headaches that long in duration can be debilitating. Do you have a history of tension headaches? Had you been under a lot of extra stress prior to this happening? As far the neck & shoulders being involved, you may have laid the wrong, may be time for a new pillow. Have you tried some moist heat on your neck & shoulders? It could be that your muscles are quite tensed up. I have a long history of migraines. If you continue to have this type of headache I would see a neurologist.


You mentioned having a CT Scan in ER, if this were chiari malformation it would have shown up on the scan. CT's & MRI's are used to diagnose this. You should be able to pick up a copy of the DC or written report of your scan to take with you to the dr.


I sure hope you can get some relief.

Thank you Susie. I have a tension headache once in a blue moon. I had severe migraines as a child. I have pillows that are 3 months old, and got a massage a week before this happened, but he never touched my neck, head, or shoulders. ER doctor said there was no swelling, but radiologists are frequently wrong. I worked as a medical Lab scientist for 12 years before I had to quit due to debilitating symptoms before I found out I had quite a few chronic illnesses. I’ve seen bad radiologists and been the victim of ones too. I want a second opinion, or at least an MRI, though I can’t stand the sound of being in one of those things. I wouldn’t even know where to begin to see a neurologist. I don’t trust the doctors in my city. I had tremors 2 years ago (Lyme related, though I wasn’t diagnosed yet) and saw a neurologist. She said I was absolutely fine. Really? I’d like to know where she went to medical school because I’m stuck with chronic neurodegenerative diseases and brain damage because of them. Sigh...

Post Edited (18yearsandcounting) : 9/22/2018 9:40:29 PM (GMT-6)

Chutz said...
Hi 18!

I don't have anything to offer except compassion and a shoulder to lean on. I live with chronic pain that is partly controlled but every day there's pain. I had to stop teaching several years ago and that was the hardest part of all. Keep posting and we're here to help hold you up.

Warmly,
Chutz

Thank you for your kindness. 🙂 I’m sure I’ll get to the bottom of it. I’ve been in chronic pain from Lyme disease and Bartonella (cat scratch fever) for a few years now. It’s a tough road, but I’m still here.

Tirzah said...
I have Chiari. That doesn't sound anything like my experience. Plus, the malformation is present from birth, so it should show up on imaging (it can get worse over time due to head injuries, car accidents, roller coasters, etc, which can cause the herniation to worsen, but it's there from day 1). Mine showed up years before I became symptomatic as an incidental finding. Chiari typically becomes symptomatic in your 20's following one of the above-mentioned activities (mine was a header down half a flight of stairs).

Tension headaches can present in different ways. My mom gets them in the location you described. She finds that heating pads, deep tissue massages and PT help her. I'm not saying you for sure have tension headaches, but if you do, those might help.

Hope you can find out what's causing your pain & get some relief!

Thank you. From what I’ve researched, it doesn’t need to start at birth. Traumatic accidents, which I’ve had a bad car accident and several concussions, plus diseases which damage the brain which I have, can also cause Chiari. The good news is that the pain is less than it was initially. 🙂

Tirzah said...
Hmmm... I'd be interested in that research if you can share it. I've always understood Arnold Chiari malformation to mean that the skull did not grow to full size at birth, which then, over time with build-up of CSF/blood that normally seeps into the suboccipital region, may cause the brain to herniate downward into the spinal canal (only ~10% of people with a type 1 malformation ever become symptomatic). Depending on the type (I have Type 1), symptoms may or may not be present at birth, but, as I understand it, the actual malformed skull always is.

In any case, Chiari definitely shows up on imaging. I would look into other possible causes.

I would be Type 1 if I had it.

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet

genetic mutations (me)

https://rarediseases.info.nih.gov/diseases/9230/chiari-malformation-type-1

Also, not published but will be soon by a chiropractor I was a patient of:

Lyme disease twists your spine horribly starting at C2 and ending at L5-S1. I have a moderate twist, made worse in my cervical spine by extensive whiplash damage. Traumatic injury from a car accident plus Lyme disease is enough to be suspicious. I’ve never had Tension Headaches in this area before, and while the pain lessens at time, now being not one of them, there has to be another cause than tension headache.