Seeking relief from a tough combo of muscle tightness and sinus pain
EDS and seasonal allergies have teamed up to make me miserable
I felt like a knife was stabbing me just above my eyes, and I groaned inwardly in frustration at the realization that my seasonal allergies were acting up again. Recently, I’ve experienced some of the worst allergy symptoms I’ve had in years, and coupled with my Ehlers-Danlos syndrome (EDS), it has led to terrible neck and shoulder pain, as well as a sinus headache.
I occasionally get sinus headaches; it’s just part of life with seasonal allergies. However, sometimes I experience a headache that feels like a sharp pain rather than the dull ache of pressure that I usually feel. Although I can power through almost any type or level of physical pain in my joints, muscles, or tendons, headaches really throw me off. It’s both strange and fascinating how we can have such varied pain tolerances within our own bodies.
My shoulders — particularly the right one — are a common source of EDS-related pain for me. Discomfort from my tight trapezius muscle often radiates up into my neck, and when it’s particularly tight, the pain can even extend over my scalp and into my forehead. Combined with the stabbing pain of sinus pressure, these two sources of discomfort can merge into one excruciating headache.
The hardest part is figuring out the best approach to treating this type of headache. Should I take a sinus decongestant? Use ibuprofen for the muscle pain or Tylenol for the headache? What about massaging my neck and shoulder muscles with my handheld massager? It feels like a perfect storm of discomfort with no easy way to relieve it; the sinus pressure and EDS muscle pain exacerbate each other and intensify the situation.
I often try a mix of treatments in hopes that something will help. Of course, there are restrictions on how and when to take medications, but it’s not uncommon for me to take a decongestant, do some massage work, and choose one pain reliever to try. Sometimes it helps, and other times it doesn’t, and I can’t determine why.
Already dealing with muscle tension from my EDS, the stress of sinus pain often causes me to tense up even more in my shoulders. While it’s common for anyone to experience neck and shoulder pain from stress, when you add EDS-related pain and stiffness to the mix, it feels like a double whammy.
Honestly, I still haven’t figured out a great solution to this painful but thankfully infrequent problem. I take my daily allergy medication, keep up with my massages, and do my best to manage the symptoms when they occur. While I continue to hope for a medication that is more effective at preventing seasonal allergies (or one that can also address my EDS), I’ll handle it as best as I can and keep pushing through.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
About the Author
Jaime Marie Spicker
For sinus issues, I resort to using steam. I fill a small bowl with a bit of water, enough to bring to a boil, add just a few drops of apple cider vinegar, and cover my head with a towel while breathing in the steam. It's not a cure, but it offers relief without the use of any medications, since everything causes side effects. Could this work for a headache too?
Dee
I would like to know what you do use for allergies and then pain
Gina
Thank you for the information
My son age 23 has recently been diagnosed with Eds after years of medical frustration.
Please continue with any insights. It’s very helpful
Patty
I feel your pain Karen & hope you find the solution! Personally, I’ve had the best luck taking daily Fexofenadine Hcl 180 mg, the REAL generic Sudafed ( that you have to request & show ID for at the pharmacy), a NetiPot, & Dry Needling for chronic muscle spasms ( PT certified). When I see a strange wrinkle under an eye right before my sinuses get irritated, I take Sudafed as labeled & use NetiPot before the infection sets in. I also wear a hat to cover my hair as outdoor allergies are the problem & if I forget, wash my hair/ eyelashes or change my pillowcase so I don’t sleep in the pollen I’m allergic to overnight! Being this crazy has helped reduce my sinus infections. I’ve also worn a mask ( when palm trees in bloom & I can’t escape walking under them). Sounds like you have a workable plan for manual therapy with those darn muscle spasms- I found a fabulous PT near me who is certified in dry needling & it actually ended ( after 2 sessions) my chronic neck spasms I suffered with for 20 years- just 2 sessions of dry needling! I love your column!!!! Thank you! Hope you are having a great school year!
Michelle
This is something I deal with on a daily basis! It feels nice to be validated. I have EDS and MCAS, so dealing with allergies is a real challenge. The headaches I get are called Occipital Neuralgia, which radiates pain up the back of your head, over the top, and into your sinuses. It’s awful. But where I have found relief is with nerve blocks. I get them every three months, and they allow me to lead a semi- normal life. They may help you as well! Ask your neurologist. I have also found non-drug relief with a chiropractic technique called an occipital lift. There is no cracking or twisting! Just a light pressure below the occipital bones to relieve pressure. It may help you get some relief when you need it most. Hang in there, and thanks for sharing your stories!
Karen Del Vecchio
I've never heard of Occipital Neuralgia, Michelle, but when I looked it up it sounds like exactly what happens to me! Thankfully I only have it happen occasionally, but it definitely seems to be more when my neck is particularly tight, which would make sense. Thank you so much for sharing!
Kristy
Hi Michelle! I'm so sorry to hear about your occipital neuralgia. So I was dealing with Occidental neuralgia along with cervicogenic headaches. It was stemming from nerve pain from my upper cervical. And my pain doctor, who is fantastic and I'm now heartbroken because he just retired, but he's up to date on a lot of new stuff. And he had me first try radio frequency for it , which actually helped a lot and lasted about 4 months. And because the radio frequency worked, he said I was a candidate to try something called a SPRINT device... It a peripheral nerve stimulator. However, unlike most peripheral nerve stimulator devices, it's temporary! I've had two done , and I'm planning on getting a third one, but the third one will be for my sacroiliac joint. But what they do is they basically insert a small wire and place it by the nerve that's giving you trouble , and then they thread the wire back out and near where it comes out of your skin they have a little device. You keep that in for about 8 weeks . While it's in you have another device that you put on that's above the size of a credit card but thicker it just sort of sticks on, and you can change the frequency and intensity of it so that it's comfortable for you . I used it for 24 hours a day, some people only use it for 12 hours a day. You don't start to feel it help immediately but after a few weeks I noticed it was giving me some relief , and you continue to experience the relief after they take it out. So I was having severe occipital neuralgia and cervicogenic headaches. I had the first one placed on my left side in summer 2023 , the second one was placed six months later on the left side so around beginning of 2024. I still have relief . They've been removed after 8 weeks both of them were taken out after 8 weeks. And I'm still having relief from it. I mean it's truly an amazing device. And they don't know how long relief lasts, because people who were in their clinical trials are still experiencing relief from it. So I cannot recommend it enough! Anyone who's having any kind of pain anywhere that can be addressed along your spine like the nerves in your spine, if radio frequency works for you, you should ask about the Sprint device. They have a website you can look it up. It's honestly fantastic. And I'm someone who has a lot of pain in my head I was dealing with chronic migraines, menstrual migraines, the cervicogenic headaches and occipital neuralgia, I also have a very bizarre atypical Facial Pain that affects my superorbital nerve on both sides (imagine having an ice cream headache, you know when you cold something drink too fast, it's that same kind of pain I have a 24/7 7 days a week, that luckily currently is managed by my buprenorphine but that's another situation LOL),. Anyway my point is that I had a lot of pain in my head so trying to do anything at all was just really difficult when you have that much pain in your head all the time. And getting rid of the pain that was taking over the back of my head on both sides, has been amazing and I super major help. So I strongly recommend that if you're a candidate for radio frequency and it works for you, ask them about the Sprint device. Not all doctors can do it, so you can just look up on the website and contact them to find a doctor near you if your doctor doesn't do it. But again I cannot recommend it enough. Sorry this is so long and I'm sorry for any grammatical errors or typing areas I have to use talk to text because my EDS is acting up with my right arm. I wish you luck my dear!
Kristy
Ugh it's so frustrating I wrote a long message right when this email came out and it's not here. :-( ? Maybe it was too long maybe I said something that wasn't appropriate I don't think I would have but I don't know. Anyway my big suggestions are like a lot of other people have written, trying steam as tolerated. Neti Pots. I take Zyrtec on a daily basis along with using flonase. I highly recommend using Flonase or some other type of nasal spray because that really gets to the issue at the site. My brother is in ENT he's the one who always recommends the Neti Pots , he says the saline it's the best way to deal with it. I personally hate it and don't like it and I don't use it, which frustrates him, but it's something he recommends. I recommend the Zyrtec or some other kind of daily allergy medication if you can tolerate it. Again I use mine all year , just like my flonase, but you can also just use it seasonally as needed. I also recommend trying a hot washcloths , just put it under hot water or you can always just wet it and then put it in the microwave for a little bit and then just put it over your eyes and your forehead that can give you some relief as well if you can tolerate the heat. You can also try using Afrin for a few days, I know we're not supposed to use it habitually , but you can try using it for a few days to get everything opened up . What I would usually do is use the afren and then after about an hour I would use the Flonase so the Flonase can get in there and then usually after a few days that's helpful and I can just stop using the afrin and use the flonase. But I wish you luck and hope you feel better soon. As an end note I apologize for any weird spellings or grammatical errors, I'm having a lot of pain in my hand and arm today so I have to use my talk to text , which is super helpful, but not super accurate.
Pam Simmons
Michelle, that occipital lift is something I will search out. For almost a year my scalp started hurting and my teeth were getting sensitive to chewing. Then I fell on ice, impacting my left hand and knee but causing a whiplash effect with signs of concussion. Anyway those pains really increased and then included my eyes and sinuses. My environmental allergies have always expressed themselves through skin pain and dysautonomia. So for a year I had been attending osteopathic manipulation (for many body ares) and at this moment observed the treatment of neck, shoulders and back to reestablish my levels of mobility, decreased pain and cognition and other autonomic issues. My scalp, eye, sinus and that burning ball of fire that seemed to be at the base of my skull at the top of my neck. I had always been a fan of chiropractic but at 50+ became intolerant to manipulation of that sort; and massage that I have sought out lately because I moved to a new state far from the few osteopath physical providers that are here. I am unsure, it seemed that the massage that I received a couple of weeks ago set off a flare-up (GERd, dryeye, gastritis, diarrhea that is usually constipation, dysautonomia, white fingers --no reactive proteins for Sjogrens just the symptoms for years now.) This has followed a similar flare after trying montelukast for chronic itching from the chest on up; the itching Was relieved and my hair even stopped falling, but it was physical torture after a week and caused me to 2x's be impeded in using my brake pedal--terrifying. Then I found out montelukast contains artificial sweetener; I inadvertently tasted the pill and had to look up the ingredients because of the sweetness--maybe explaining the crazy reaction I had. Nutrasweet is a huge no-no. This comment is much longer than I intended it to be...Karen, I meant for this reply to Michelle to also be a reply to you as well, but for some reason I am prevented from going to the top to edit this comment screen. Comfort and health to you both. This has
Jill Fracci
Omg… YES! My allergies have been HORRIBLE! Im thinking Mast Cell Activation problems & im going to dr… but the drs around here have no idea what to do with ED! Like, its all in ur head! Theres so many things going on you dont know what to do! Hang in there! Write me if u wish Id like to know your issues! Thanx, Jill
Valerie
Regarding the trap tightness and it radiating up causing a bad headache, omg yes! Those become actual migraines for me that I can only get rid of with migraine meds. I don't get many migraines anymore. Quitting wheat helped reduce frequency and intensity of headaches of all kinds (I think MTHFR might be common among EDS-ers). I also had surgery for my scalene muscles to reduce that muscle pressure, which also reduced headaches. Although it probably saved my life (I was in such bad shape at the time) it also caused some other major problems. So I do not recommend it except as a last resort! If that massager I have told you about existed at the time (15 years ago) I think I could have avoided surgery.