Headaches and EDS – Common and Painful

I am brand new and THRILLED that CSF leaks are common with HSD. I have had these terrible headaches since 2018 that cause dizziness, lightheadedness, faintness, confusion, sensitivity to light, inability to move my neck--the pain is positional, and memory lapse when the pain is at a 10. I have told my doctors it feels IDENTICAL to CSF leak after a spinal tap. I am prone to extended CSF leaks following a spinal tap, up to two weeks later. No one believed me so I just "dealt" with it. I was told in 2019 that my headaches were Occipital Neuralgia. It matched my symptoms but since my headaches are triggered by exercise (running or anything involving my spine or bobbling my head/neck around) I always suspect there was more to it. I also have Neurosarcoidosis and was diagnosed with that at 12yrs old when I woke up completely deaf. It's been a very long frustrating journey because my symptoms overlap the neurosarcoidosis.

I have the headaches, right-side weakness and pain down my mid right back all the way down the leg--also typically triggered by exercise and the headaches and leg pain always happen together. I wss told the leg pain was Piriformis Syndrome but it did not account for the weakness (again this all stated in 2018). In 2020 I suffered HORRIBLE GI pain that felt like intermittent blockages. GI doc just claimed I was constipated even though I'd "go" 2-3x a day. Again I was dismissed. I ended up in the ER multiple occasions with CT showing largely protruding abdomen with swollen intestines but they couldn't figure out why. I had nausea and had vomited undigested food consumed 6hrs prior on two occasions. Still my symptoms were minimized and ignored. My former Neurologist then decided my symptoms were just in my head and suggested I see a Psychiatrist. He then reached out to ALL my providers and told them I had Functional Neurological Disorder AND Somatoform Disorder. Some of my providers believed him (though I was evaluated for FND and told I do NOT have that) and began neglecting my care. I reported textbook symptoms of anemia and they refused to check my iron at my request. I might also add I am a Scientist and some providers have used my education and knowledge against me saying I ask too many questions and I know too much. Anyway, one providers decide to do a CBC and found my HGB dropped and finally checked my iron. It was 12. My ferritin was 7, iron saturation was 3%. Thy were shocked and I needed an emergency iron infusion.

I'm so glad that this HSD diagnosed can shed light on my headaches, weakness, and pain the right side and abdominal. Being gaslight for YEARS is traumatic and still as recent as last month. A new Neurologist I saw questioned me sending portal messages at 3am saying I'm losing sleep and asked my occupation and accused me of Googling things. I WORK NIGHT SHIFT I reminded him and as a Scientist it's literally my job to research. This was in reference to my neurosarcoidosis that I've lived with since 12yrs old and was the world's youngest child ever diagnosed and biopsy confirmed. But because he didn’t "see" anything wrong and the fact that I cannot have an MRI due to cochlear implants for my deafness, he figured I knew way too much and rather than learn from me felt challenged by me. He's only seen two neurosarcoidosis patients (ME being the second one and his first one isn't even biopsy confirmed). Having two disease that can cause the exact same symptoms is challenging. But if I can't get help for one I can at least get the support and help with this one.

I have hEDS diagnosed in 2003, also POTS & chronic daily migraine. In 2008 a doctor gave me a nerve block injection in my neck, & partially severed the greater occipital nerve. It was & still is agony. It took 2yrs to find anyone to operate, all the doctors ran scared of me & still do. Long story short, I don't have the trigeminal or occipital nerves now, following lots of head/neck surgery. I've had covid twice, had a severe reaction to the vaccine, & now have long covid, which I'm not convinced I'll ever recover from (my GP told me most people do, but he couldn't be sure in my case). I've gone downhill in a lot of ways, but in May 2022 I had a "long covid' flare up, which started as a cough then went to sinus. I had a lot of trouble with swallowing & it was all a bit scary. One night I changed position in bed and suddenly lots of clear fluid came out of my nose - I thought I'd vomited, it happened so fast. For the next 20mins the (completely clear) fluid kept coming, I'll never know how much there was, as most landed on the carpet. The head pain was awful, & I've never recovered from it. My neuro told me it was just sinusitis- he did organise scans but of course they showed nothing. I lost a lot of weight for no known reason, & then in Aug I had a bump appear in occipital region, which I've now discovered is an enlarged lymph node, & now there are several others too. Also for the last 4 months I've had a 'green' watery diarrhoea (no infection found). The occipital lumps are causing so much pressure & pain I don't know what to do (I can't get out of bed much). No one can tell me if these lumps are related to the diarrhoea. Most doctors try to avoid me because they don't like complex cases, so I just thought I'd ask on here if anyone had experienced anything similar. Thanks!

Have suffered for 18+ years with headaches only when I’m sleeping which require me to get up take caffeine and could be once to three times a night just recently told that I could have EDS. How could tell I tell if these headaches are related to EDS? Have had MRIs that show nothing no history of headaches to age 62 and then they start to get worse in intensity and frequency. Thank you for replies.

@akalsas, it is best to consult with a medical professional who specializes in Ehlers-Danlos syndrome to confirm a suspected diagnosis. To submit a request for appointment at Mayo Clinic's EDS Clinic start here: http://mayocl.in/1mtmR63

Here is an international Find a Professional database managed by the Ehlers-Danlos Society.
- EDS Healthcare Professionals Directory https://www.ehlers-danlos.com/healthcare-professionals-directory/

Dr. Rozen’s description of headache issues resonates with me. I was diagnosed with hypermobile EDS in my early fifties after a lifetime of muscular skeletal pain, injuries & headaches… and a Pandora’s box of mostly ineffective treatments. Since then, I’ve found a wonderful orthopedic surgeon to repair my joints and neurologist to treat my cervical dystonia… but finding helpful medical treatment for my headaches has been more elusive.

Ice, cervical collar ( can pack ice block into it), migraine chill cap, Mackenzie cervical roll, Fioricet am and pm, Relpax, cervical epidurals, avoidance of strain, and meditation for pain ie Headspace App. I find laying on ice at bedtime helps, I keep a heating pad handy cause it’s quite chilling! So sorry, brain pain is exhausting 🌸

Headache treatments with EDS are an absolute nightmare - wish I could provide some comfort...
It seems that most neurologists are only just beginning to discover how much the nerves are involved with EDS, not just joints & muscles etc - hence in my experience they are getting more wary of it, not less ... 😳

Thanks for the great list of your strategies and treatments… definitely includes some things I haven’t tried yet!

I have suffered from migraines and headaches since childhood. I have found an electrolyte mix to be a game changer! I use LMNT or Liquid IV but I think any electrolyte mix is helpful. You can also make your own (LMNT provides their recipe for free on their website). I now drink 16 oz. of an electrolyte mix between 4-5pm and it has drastically reduced headaches in the evening and next morning. I hope this is helpful and I am sorry about the painful headaches that you experience, as well as the sleep disturbance.

Thx. Will investigate