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I too have this a alot and find myself massaging the area all the time. I would say this symptom for me is present at least at a minimum of 65% of the time, varying in severity, etc. I also have a feeling of a burning, acid-like, yet tingly pain on the inside of my neck, at the base of the skull, where it meets the neck, but it feels as if it’s on the inside of my spinal cord, as in, it’s an inside pain, not pain from the outside. The burning feeling is the most prominent feeling and the most bothersome.
thanks for the question!
~tennille
I have had the neck shoulder pain everyday since I can remember…at least 35 years! I tried the Zantac Zyrtec combo…and it’s GONE! Didn’t get too excited since it was maybe a placebo effect…but guess what! It’s been two weeks and it’s still gone! Thank YOU Dr. Diana!!! 🙂
Little History: HEDS,POTS,Harrington Rod from Scoliosis…list goes on.Very interesting! I do get this type of pain quite often. For me it seems worse as the day wears on. The pain is horrible. I put muscle rub on my neck and shoulders and when I have been able to get a massage it does help while I am being massaged but as soon as it is over the pain is back full force.
Hi,
I’m curious, of those who have found they have CCSVI, which side of their necks do they get this head, neck to shoulder pain in, is it the same side as the wide engorged jugular vein, or the other one ?My pain always affected my left side, so I’ll be curious to find out whether I do have CCSVI and if so, which side.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!I hv occipital headaches which have been present for only the last year and a half. It comes and goes but is much less frequent once I started on mast cell treatment. (I was ‘lucky’ to qualify for an appy with a GI mastcell specialist … Only had to wait 3 weeks). I usually don’t have it radiating more than a couple inches below the head.
I wanted to add that for many years I have needed to avoid added msg… particularly if there was any alcohol with it OR some sort of dirivative. It was easy to figure out because the symptoms would be immediate. It would start with a sizzling in the occipital area and tehn a headache in the same place Once in a while it progressed to`being unable to breath unconsciously…like “auto-pilot” was turned off. I would manually need to move my ribs so air would go in and out of my lungs. the lattr happened with Egg Foo Yong (which has a touch of alcohol in it (eve should be bued off). I thought I was safe eating steamed buns but I realized that since it is made with yeast, a fermentation process can occur.
I mention this because it is located exactly where I get the occipital headacheds these days. I know this thread is older… just thought I’d put it out there in case it had any “valie” Dr. Diana.
Hi,
Intermittently. Since being treated for MCAS it is less frequent. I can’t say it is the worst thing, but perhaps I’m so used to having issues everything gets compared to total down time rather than what it is like to feel well. It is sort of like I don’t know what it is like to feel normal so is it THAT bad?
With that said, when I get this, I feel sick to my stomach. Sometimes I have a mild feeling of hesitantcy in swallowing (not choking but more of not having the normal, unconscious way of swallowing). I get cold/hot feelings in my arms with occasional numbness….usually after sleeping on the latter. I found that a collar worn while sleeping helps when it is at its worst… but otherwise I find it hot and uncomfortable.
Coukd anyone tell me the following:
1) I hv an MRI on order f the cervical region. The doc says it is my choice to get an upright or a supine one. Which should I get and why? Supporting documentation welcomed.
2) where can I get a very minimal neck support.. My foam one it hit.
3) does anyone know of a EDS knowledgeable neurologist in the Boston area or New England?
Thanks ahead of time
(PS: I am having the darndest time of logging in here from my notification link in my email. Who is the direct contact for web issues?)
Where do I start with that one. I, basically, thought it was normal and that everyone had it. I also dated someone who ‘confirmed’ for me that people who are tall just have back pain. I know you’re not asking about back pain here but all of this pain was just ‘the norm’ to me and I assumed everyone, pretty much, struggled a little – we all have our own issues , type of motto. Move on and live life! Of course it’s gotten progressively worse and worse and worse!!! I am capable of posting more in depth, but will defer to later to do so since I am not feeling up to it right now <--- (light way of saying that I feel like serious crap). I just felt compelled to get my comments in so that we can compare similarities.
My daughter, who has EDS and POTS, has constant neck tightness and knots and pain. I have a question about my other daughter, who most likely does not have EDS. She developed neck pain at about age 14, which is the same age my older daughter started showing all her POTS symptoms. This pain never goes away. She has had xrays, MRIs, ultrsounds, chiropractic care and physical therapy…nothing has helped. I am actually starting to wonder if my daughter could have some very mild form of EDS that isn’t that noticable. She has also has some stomach issues and hip issues like my other daughter, but does not have the stretchy skin that her sister does. We don’t have any idea how to help her neck pain. I have a hard time accepting that an otherwise perfectly healthy teenager would have neck pain for no apparent reason. She never had any type of injury. I am intersted to hear your theory Diana :-).
I LOVE this question! I have also seen EDS families, with one or two members that are NOT diagnosed with EDS (not flexible), but they develop hydrocephalus and dysautonomia. I believe that both conditions are secondary to our lousy veins, and I would bet my left arm (my “good arm”), that your daughter would respond to Diamox. And I’d throw in mast cell treatment, just to cover the basics! Let us know? 🙂 Diana
I too have this a alot and find myself massaging the area all the time. I would say this symptom for me is present at least at a minimum of 65% of the time, varying in severity, etc. I also have a feeling of a burning, acid-like, yet tingly pain on the inside of my neck, at the base of the skull, where it meets the neck, but it feels as if it’s on the inside of my spinal cord, as in, it’s an inside pain, not pain from the outside. The burning feeling is the most prominent feeling and the most bothersome.
thanks for the question!
~tennille
Perfect description, Tennille! I believe the hydrocephalus starts the head/neck pain and the mast cells (and inflammation) kicking out certain inflammatory cytokines (and interleukins) causes the pain. A combination of my soft cervical collar at night, Diamox, mast cell meds and keeping my inflammation down (eating the right foods, etc), keeps the majority of it at bay. Praise God! I had gotten to the point where I couldn’t even hold up my own head, nor could I turn my head without feeling like I was passing out. That’s a horrible place to be, as most of you know… 🙂 Diana
I have had the neck shoulder pain everyday since I can remember…at least 35 years! I tried the Zantac Zyrtec combo…and it’s GONE! Didn’t get too excited since it was maybe a placebo effect…but guess what! It’s been two weeks and it’s still gone! Thank YOU Dr. Diana!!! 🙂
Little History: HEDS,POTS,Harrington Rod from Scoliosis…list goes on.Well, Jennifer, how great is THAT?! If your “placebo effect” (ha) starts to creep away, you still have Diamox to reach for. 🙂 Diana
Very interesting! I do get this type of pain quite often. For me it seems worse as the day wears on. The pain is horrible. I put muscle rub on my neck and shoulders and when I have been able to get a massage it does help while I am being massaged but as soon as it is over the pain is back full force.
Hello, my friend, Did you check into the symptoms of hydrocephalus? I betcha’ you’ve got them! Have you tried Diamox or mast cell meds yet? Please do! Interestingly, many of us are in the “autism spectrum”, and researchers are looking very closely at head circumference sizes in autistic children (going back to when they were babies). Many doctors prescribe Diamox for autistic kids. Interesting, don’t you think? Hon, I just know that taking off that extra pressure was truly a life-saver for me.. Let us know? 🙂 Big hug, Diana
Hi,
I’m curious, of those who have found they have CCSVI, which side of their necks do they get this head, neck to shoulder pain in, is it the same side as the wide engorged jugular vein, or the other one ?Hi Barb, my son and I both have the BIG, oversized veins on our right side, but both of us have neck pain on both sides. Interestingly, though, my right side is MUCH more affected than my left (more subluxations, low muscle tone, looser joints, livido reticularis is worse, etc). As you know, I’m not a huge believer in coincidences! 🙂 Diana
I have needed to avoid added msg… particularly if there was any alcohol with it OR some sort of dirivative.
I mention this because it is located exactly where I get the occipital headacheds these days. I know this thread is older… just thought I’d put it out there in case it had any “valie” Dr. Diana.So glad you did! I’ve always thought that our pain was chemical, not physical, if that makes any sense to you. I hear about MSG (and certainly alcohol problems) a LOT. sniff… I kind of miss my wine… 😉 Diana
Hi!
I have been diagnosed with Chiari 0 Malformation with 3mm herniation. Obviously I don’t fit the 5mm criteria for Type 1. I started taking Diamox and became violently ill.
Is there another alternative drug that has the same or similar effects? We discussed that my herniation is possibly a result of hydrocephalus and the pressure pushing down on my brain.
I have neck pain all the time that radiates to my shoulder blades. I also have issues changing postures. Lying down is comfortable for a little and then the pain comes back. However, when I sit up I feel like I am going to faint.
Not sure where to go from here. My doctor does not want me to continue taking Diamox, and I don’t really want to consider decompression surgery just yet.
Thanks!
JillHi Jill, There is no magic answer, but because there is no substitute, really (lasix can help, but it won’t do nearly as much as Diamox), I’d circle back. Do your doctors know WHY you had a bad reaction? It doesn’t sound like an allergic reaction… Did they check your blood acidity and potassium prior to prescribing? If your CO2 is not WAY above 22 before starting Diamox, you may have suffered with acidity. And how is your potassium level? If both of those are good, I’d next look at your dosage and see if that can be tweaked. Any contraindications, medicine-wise? Your doctors should be able to explain WHY you had a weird reaction, my friend. I wouldn’t let them off the hook that easily (especially if surgery that may or may not help is your only other option). Let us know? 🙂 Diana
Hi,
Intermittently. Since being treated for MCAS it is less frequent. I can’t say it is the worst thing, but perhaps I’m so used to having issues everything gets compared to total down time rather than what it is like to feel well. It is sort of like I don’t know what it is like to feel normal so is it THAT bad?
With that said, when I get this, I feel sick to my stomach. Sometimes I have a mild feeling of hesitantcy in swallowing (not choking but more of not having the normal, unconscious way of swallowing). I get cold/hot feelings in my arms with occasional numbness….usually after sleeping on the latter. I found that a collar worn while sleeping helps when it is at its worst… but otherwise I find it hot and uncomfortable.
Coukd anyone tell me the following:
1) I hv an MRI on order f the cervical region. The doc says it is my choice to get an upright or a supine one. Which should I get and why? Supporting documentation welcomed.
upright is usually preferred — it’s your “normal” position, gravity pulls any potential Chiari down, and because it looks to the researchers as if our brains are “sinking”, they like to see it vertical. Check out the article about craniocervical instability (one of the references listed in Handouts)
2) where can I get a very minimal neck support.. My foam one it hit.
Did you look at the Store on this site? I get mine through Amazon, and have been known to try a few from the drug store…
3) does anyone know of a EDS knowledgeable neurologist in the Boston area or New England?
Does anyone know of an EDS knowledgeable neurologist ANY PLACE?! If so, please add their name to the “good doctors” list! Thanks!
Thanks ahead of time(PS: I am having the darndest time of logging in here from my notification link in my email. Who is the direct contact for web issues?)
If this is still a problem, please check with PalominoMorgan. We’ll get to the bottom of it! 🙂 Diana
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