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Hi there,
My name is Mary Clare and I am 20 years old. I have been diagnosed with EDS for about 3 years now. I am constantly in pain and have recently been experiencing severe migraines. I have had the neck pain that you are describing for quite some time now. I went to see Dr. Durrani in Cincinnati, Ohio. He put me in a neck collar and would like to do a C1 – C2 fusion. I was hoping to get your opinion on this.
Thanks!
hey Dr. D. i took your advice and joined the forum. at this point my dx is hypermobility and POTS so i came to this thread first. I do have that angel wing pattern type neck ache all the time. Some days much worse then other and sometimes coupled with a very bad headache and sore jaw with tingles or twitches going up to my right eye. I always thought it was because my muscles were over compensating for my loose ligaments from the Hypermobilty since my neck and shoulders (and hips) are the most effected areas and constantly popping out of place. I also thought this was worse in the morning bc my pain increases when i get stiff from not moving too much and i wake up with sore muscles and joints that feel out of place and have to pop them back in. hope all is well, bethany
Last week my massage therapist said my entire neck felt like steel. I could barely move. When she pressed on certain areas my arms would go numb for example. AFTER WEARING A SOFT CERVICAL COLLAR for just one week, I was in a lot less pain and my massage therapist said my neck felt better than the week before, but I had what felt like a marble on one side, and severe tightness (like steel) in an area on the other side (that gave me a headache and made me feel nauseous when she pressed on them). The pain also travelled when she pressed on them. This “marble” must be one of those knots Dr. Diana is speaking of! I will be seeing my Rheumatologist next week, and I will be bringing The Driscoll Theory and I will be requesting to be evaluated for CCSVI, External Communicating Hydrocephalus (trial of Diamox) and CCI (Cranial Cervical Instability). I will post something after the visit. Thanks Dr. Diana and everyone for all of your help!
Ouch, ME! I tried a soft cervical collar, but could not find a way to wear it with out feeling like I am being suffocated (even though I wear it very loose). I did read a suggestion somewhere (I think it was from DR. Diana) to sleep with a towel rolled under my the neck, rather than a pillow. I have been doing this ever since I read it, and now I can’t stand to lay down without that support. (I like to place a soft ice pack on the towel to ice my neck). I also feel that my head is too heavy for my neck, and often use my hands to hold up my head.
A few times while wearing the cervical neck collar, something strange happened with my neck muscle on the left side. I could feel the muscle moving/jumping and the collar got very tight. It really scared me the first time, but it passed very quickly. Dr. D do you know what this is? I’m not worried about it, I’m just curious how it relates to everything.
i have for years! my neck is also very rock tight. i cannot have people give me massages or anything i about fall over if they do. lol
This has now become my biggest issue and can’t hardly do much because of it. Even a few minutes on the computer flares it up. Anyhow, went to get a soft neck collar, but had a hard time finding anything to fit my scrawny long thin neck. I might try the zoo to see if a giraffe has on old one I can use. 🙂 And I’m only 5’6inches, didn’t realize my neck was that long. Anyhow, any ideas? I’ve checked a few med places and I did find the 4 inch was close to the right height (could be a tad shorter) but it’s too big around. How are these supposed to fit? Is it supposed to be somewhat tight or lose?
Thanks
MaiysaI have not been diagnosed with EDS. The only EDS symptom I have is bruising easily. I have tiny vessels in my fingers pop all the time even without an obvious injury. I was diagnosed in December with POTS. I also feel that my head is too heavy for my neck, and often use my hands to hold up my head. My husband has been so good to me, massaging my shoulders, neck and back for me. Just last night I woke up with a migraine due to the tight muscles in my shoulder and neck. I took some meds, but would not have been able to get it to calm down without the skilled massage from my husband. I even commented to him that when I lay on my right side, I cannot let my left (top) arm rest in front of me because it seems to cut off my circulation and causes more neck/shoulder/headache pain. For years I’ve slept with a rather flat pillow that I fold one edge so there is support under my neck. This helps me to cope with a headache and sometimes, I even put heat on the base of my neck. My plan is to go buy a cervical collar and try that tonight. My PCP has been terrific in helping me figure out what works.
I’m on Midodrine, Mestinon, Florinef, & Low Dose Naltrexone.Just a quick word about collars and supporting the head/neck at night.
Prior to getting my wonderful Philadelphia collar (which I cannot praise highly enough), I used a make-shift one that was not as cumbersome but never-the-less effective to a degree, for providing some support. What I bought was a horseshoe shaped ‘Cushtie’ (they have them on ebay for about £10), it’s a stretchy fabric filled with tiny polystyrene beads, it’s very lightweight (and washable to some degree). I sewed an additional seam around the outside, to add a bit more tension to the fabric and make it more supportive, a velcro fastener was sewn to both of the front parts, so that it could be ‘closed’ to make a full circle.
It helped me reduce the discomfort, so I hope it can help someone else.
Regards
Barbara
(uk)I have had sore places and hard knots in the back of my head for ten years now every since I was diagnosed with pots and neuropathy so I was wondering what can be done for it.
Hi I am 50 years old and am diagnosed with EDS hypermobility & autonomic dysfunction amongst other neurologic symptoms since many years. My neck has certainly gone downhill gradually since peri-menopause. I often wondered if this is related with hormonal decline, reduction of female hormones/ageing in someone who was born with developmental issues e.g. EDS. I mention this because I also developed a goiter of late whilst my thyroid tests came back within reference ranges.
I’m not sure but it’s also possible that my cervical area was injured at some point due to hyperextensibility either in sleep or when I am awake.
Recently, I bought myself a rigid collar to wear during the daytime by following advice on D Theory. It’s tough. I had tried but it’s so uncomfortable. I already wear a soft collar at night which helps. I get woken up with pain in the back of my neck and the side of the neck. It’s a very sharp, shooting pain which I do dislike.
I also heard cranial snapping sound at the back of my skull more than once. It feels as if my neck/shoulder and skulls weren’t quite aligned together normally. I get this in my lower hip as well. I get sudden sensation of blackout as I try to look behind me by turning my neck.
I seriously do wonder how my mobility would be in the next 10 years or so. I’m not depressed yet I am not too optimistic. But I digress.
I’d have to say this is likely the biggest complaint of EDS/POTS based on the number of posts & views! This & fatigue are a close tie for me.
I’ve struggled with this for years. I began complaining to my doctor about this & daily headaches in 2000. I was told they were tension headaches and sent to a chiro. It didn’t help. Fast forward through a sports-related neck strain and 3 whiplashes (my car is certainly a target for bad drivers), and 2 falls (over a dog gate & down a flight of stairs) and it’s still here. I’ve tried PT, more chiro care, OTC meds, ergonomic workstation adjustments at work, acupuncture, steroid injections, & massage. NOTHING touches it. Except for my c-collar! Best $10 I’ve ever spent- haha.
Results? I have a little more energy today. Could it be the coffee with an extra shot of espresso? Maybe :). I think my vision is a TINY bit less blurry today. Well, it was when I woke up anyway. Hmmm… the neck pain is back and so is the blurry vision. Related? Heck yes!
Also, I think my voice is higher pitched when I’m in the collar. Anyone else? Why would that be?
I bought a simple cervical collar but felt like it cut off the blood flow in my neck even more than before. 🙁
I’m on Diamox now and experimenting with the dose. Has anyone gotten a bad migraine from forgetting to take Diamox? I did! A muscle relaxant and laying with a rolled pillow under my neck and 5 pound rice pack on my head as the only thing that helped.
Sure hoping for a cure soon!The migraine is your brain’s way of saying “what’s with the pressure? I thought we were working on this.”. Forgetting the night dose is HELL.
Hi
You say your voice is higher in your collar, I’m just a little concerned that your collar could be too tight fitting on your throat, not good. I had to have mine cut away a little from that area in order to be comfortable.Whilst we’re on the subject of collars, for anyone that’s recently bought one, a Philadelphia collar is best worn with a collar lining, at all times, in order to avoid overheating and discomfort. They have to be cleaned daily too, to stop further skin soreness and irritation. I think they’re called ‘cool max’ liners.
Regards
Barbara
(UK)I’d have to say this is likely the biggest complaint of EDS/POTS based on the number of posts & views! This & fatigue are a close tie for me.
I’ve struggled with this for years. I began complaining to my doctor about this & daily headaches in 2000. I was told they were tension headaches and sent to a chiro. It didn’t help. Fast forward through a sports-related neck strain and 3 whiplashes (my car is certainly a target for bad drivers), and 2 falls (over a dog gate & down a flight of stairs) and it’s still here. I’ve tried PT, more chiro care, OTC meds, ergonomic workstation adjustments at work, acupuncture, steroid injections, & massage. NOTHING touches it. Except for my c-collar! Best $10 I’ve ever spent- haha.
Results? I have a little more energy today. Could it be the coffee with an extra shot of espresso? Maybe :). I think my vision is a TINY bit less blurry today. Well, it was when I woke up anyway. Hmmm… the neck pain is back and so is the blurry vision. Related? Heck yes!
Also, I think my voice is higher pitched when I’m in the collar. Anyone else? Why would that be?
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