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neck pain, tinnitus, autonomic dysfunction, Ehlers-Danlos Syndrome
I have been having a worsening neck problem for a few years that hasn't been totally diagnosed. Pain is at base of skull and radiates forward into ears somehow causing ringing and vertigo. Sometimes I get nausea which seems to be in the back of my throat (about where gag reflex is) that with it. Because of my Ehlers-Danlos Syndrome (classical, hypermobility and features of Vascular types, some features of Marfans), everything is hypermobile, subluxing or dislocating. It seems to me like my head is sinking on my neck (i.e. neck can't totally support head). I am also having a severe problem with anterior shoulder dislocations of my (R) shoulder which can be out for hours, pulling on my neck.
Friday night I went to Emerg to get shoulder fixed and BP was 180/122. Didn't feel well next two days then Mon when I awoke the back of my neck felt like there was a lot of pressure there and the ear ringing and throat nausea were severe plus I had chest tightness and upper abd tightness. My BP was up most of the day and these symptoms continued. I was told to go to Emerg and all they did was an EKG and told me to restart my hydrochlorothiazide. Just walking up one flight of stairs it was 172/120, P 110 and I was SOB. If I bent over at waist it was 150/125. I felt better yesterday and today the neck and related symptoms are just as bad. I had an MRI a few years ago to see if I had a chiari malformation but negative. Did get dx'ed with occipital; neuralgia but I think there is more going on than that. Wonder if this is somehow triggering autonomic problem and hence the BP problem but what do I do with this? You can't get anything done in Canada quickly and with my EDS, I was stunned to be sent home after having an EKG. Only thing that didn't put BP up was if I laid on (L) side. Hx meningitis 1996 and had constant H/A same area since. I stopped complaining when no one seemed to find any explanation. This with the BP and pressure/chest pain is getting scary (and yes I am trying not to stress out about it).Any ideas how to proceed would be greatly appreciated! Thank you
Friday night I went to Emerg to get shoulder fixed and BP was 180/122. Didn't feel well next two days then Mon when I awoke the back of my neck felt like there was a lot of pressure there and the ear ringing and throat nausea were severe plus I had chest tightness and upper abd tightness. My BP was up most of the day and these symptoms continued. I was told to go to Emerg and all they did was an EKG and told me to restart my hydrochlorothiazide. Just walking up one flight of stairs it was 172/120, P 110 and I was SOB. If I bent over at waist it was 150/125. I felt better yesterday and today the neck and related symptoms are just as bad. I had an MRI a few years ago to see if I had a chiari malformation but negative. Did get dx'ed with occipital; neuralgia but I think there is more going on than that. Wonder if this is somehow triggering autonomic problem and hence the BP problem but what do I do with this? You can't get anything done in Canada quickly and with my EDS, I was stunned to be sent home after having an EKG. Only thing that didn't put BP up was if I laid on (L) side. Hx meningitis 1996 and had constant H/A same area since. I stopped complaining when no one seemed to find any explanation. This with the BP and pressure/chest pain is getting scary (and yes I am trying not to stress out about it).Any ideas how to proceed would be greatly appreciated! Thank you
Hi Jen, I also see Dr. Tinkle and Dr. Durrani. I had the C1-C2 instability surgery back last August. I do feel better some. I am continuing to have severe headaches every day. It has been very hard to adjust. I also am having another surgery for my lumbar L3-4, 4-5, 5-6 on the same day that you are having your surgery. I wonder if we will see each other there? I do recommend anyone to have the c1-c2 surgery just not false hopes that everything is going to be "normal". My problem now since I have had the surgery is severe dizziness to the point that I vomit. So I am currently going through tests to figure out why I am doing this. So if anyone has any foresight into this problem please feel free to give advice.
Christina
Christina
I have EDS Hypermobile Type. I was just diagnosed with fibro, C1-2 instability for which I am having surgery on 3/23/11. This is a very common finding in EDS patients. The surgeon I am seeing is one of the very few in the world that does this kind of surgery. I have severe stenosis in C3-4 so I could be fused down to there. We are not sure of all details. It depends on the EDS Dr. and my surgeon's discussion. Who do you all see for your EDS? I see Dr. Brad Tinkle in Cincinnati, OH as well as Dr. Durrani, the ortho surgeon. I also suffer from POTS and dysautonomia.
The symptoms are hard to tell apart since dysautonomia/POTS can cause headaches, tinnitus, etc. I saw my CT scan and the C1 was barely hanging on the C2 vertabrae when I flexed my neck side to side. Scary stuff!
Dr. Durrani is actually sending patients to Dr. Tinkle for confirmation of EDS based on his CT findings!!!!! He had a 17 yr old in there with my exact problem and he is being evaluated for EDS. Wild that a surgeon now supports our cause. He and Dr. Fraser Henderson are some of the best in world at this problem!
The symptoms are hard to tell apart since dysautonomia/POTS can cause headaches, tinnitus, etc. I saw my CT scan and the C1 was barely hanging on the C2 vertabrae when I flexed my neck side to side. Scary stuff!
Dr. Durrani is actually sending patients to Dr. Tinkle for confirmation of EDS based on his CT findings!!!!! He had a 17 yr old in there with my exact problem and he is being evaluated for EDS. Wild that a surgeon now supports our cause. He and Dr. Fraser Henderson are some of the best in world at this problem!
Hi...I see u have a few related conditions and wonder if u were checked for others like chiari...tethered cord?....
I too have EDS and have been dealing with muscle spasms.....my dr feels I might have disks issues causing much of this, EDS is lax ligaments that support the joints, so it does make sense that the disks would herniate.
Also, many with EDS are slow to heal...can have issues at a surgical site....
I pray u heal well and invite u to join the EDS group
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc
"selma"
I too have EDS and have been dealing with muscle spasms.....my dr feels I might have disks issues causing much of this, EDS is lax ligaments that support the joints, so it does make sense that the disks would herniate.
Also, many with EDS are slow to heal...can have issues at a surgical site....
I pray u heal well and invite u to join the EDS group
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc
"selma"
I have been diagnosed with EDS (Type 3) and Postural Orthostatic Tachycardia Syndrome (or POTS) which is an autonomic nervous system disorder. Related to the POTS and/or EDS is also irritable bowel syndrome, osteopenia (first at 27 but after a year of supplements I'm in the normal range), joint pain, headaches, migraines, tinnitus, some funky nerve issues where I...freak out (thats the only was I can describe it, not painful just totally unbearable) and random blurry vision. I also have incredibly sensitive skin (fragrance free everything) and have an 'allergy' to adhesive. Even the most hypoallergic varieties cause a rash or "hickey" as Jesse described it. I was an extremely active and very fit and toned female through my mid to late 20's but after a series of continually worsening symptoms, I've lost nearly all my muscle tone which I think exacerbates the POTS and make me more prone to injury from the EDS. 2.5 years ago I somehow injured my neck (c5-6 extruded and pushing on my spinal cord). After over 2 years of PT and every conservative treatment things were actually getting worse and a second MRI showed c5-6 still extruded with c4-5 as well and c3-4 herniated. I had surgery 2 months ago (2 level anterior discectomy and fusion using bone from my hip). Things had been going well but suddenly I developed a bony protrusion and several muscle knots in my neck above the surgery site and lost the 20 or so degrees I had gained in my range of motion and am back to being in significant pain in a matter of just 3 or 4 days. Muscle relaxers (Flexeril, Soma and Skelaxin) haven't dented the muscle spasms and only 15mg of oxycodone dents the pain when it gets bad. We're going to be getting another MRI I guess, but I can't help but think that the EDS has something to do with this.
1 Comments
So sorry to hear about your painful and relentless neck issues. I have VEDS and get the chronic pain....
Regarding your skin - Look up "purpura" - that may explain some of your adhesive issues ( bleeding under the skin when tape or bandaids are removed, skin is stretched, etc...). However I also have adhesive sensitivity and will break out get trashy from most bandaids and the usual tapes used in hospitals. Asking staff to use "paper tape" can help. Best of luck.
Regarding your skin - Look up "purpura" - that may explain some of your adhesive issues ( bleeding under the skin when tape or bandaids are removed, skin is stretched, etc...). However I also have adhesive sensitivity and will break out get trashy from most bandaids and the usual tapes used in hospitals. Asking staff to use "paper tape" can help. Best of luck.
Did you ever get the answers to these questions.
I have some of these same symptoms, some of which may or may not be related (tinnitus, dry heaves out of the blue that end quickly after one round each time and happen more often in the first part of a 10-hour shift on the phone...headaches, etc.
I have recently learned I have a lot of wear-and-tear damage to C 3-4 not really explained by any previous work or hobbies/sports.
I have found what is probably directly related: CCIS (if I remember the acronym correctly), It stands for Chronic Cervical Instability Syndrome, which is caused by too much mobility of the upper neck vertebrae. EDS and/or injury are two possible causes or aggravating factors.
I have also have fainting episodes caused by standing still too long, also possibly related.
As of now, this diagnosis is not clearly as to criteria; specialists are having seminars to compare what they think is relevant in a history and physicaL exam. I plan to ask my surgeon about this and likely you should ask an EDS-savvy specialist, too.
My symptoms got dramatically worse over thew last few years, since I was injured in a chiropractic maneuver in C 6-7 and likely there, too, since after the injury--never before--I had pain in my upper neck when I rested my head onto a headrest or chair back, It has been popping and "crunching" for a year or two.
I, too have hypermobile, classic and the indeterminate mixed type. I wasn't aware of he vascular aspect in me, except easy bruising, but am finding that most IVs and blood draws end with a hematoma (deep, often big bruise) when the technician presses down with a cotton pad even fairly gently anytime before the needle or IV catheter is ALL the way out.
That's only part of it, but have any of you reading this noticed the same thing, and/or that adhesive tape can strip a full layer of skin or cause a huge dark "hickey" when removed?
I have some of these same symptoms, some of which may or may not be related (tinnitus, dry heaves out of the blue that end quickly after one round each time and happen more often in the first part of a 10-hour shift on the phone...headaches, etc.
I have recently learned I have a lot of wear-and-tear damage to C 3-4 not really explained by any previous work or hobbies/sports.
I have found what is probably directly related: CCIS (if I remember the acronym correctly), It stands for Chronic Cervical Instability Syndrome, which is caused by too much mobility of the upper neck vertebrae. EDS and/or injury are two possible causes or aggravating factors.
I have also have fainting episodes caused by standing still too long, also possibly related.
As of now, this diagnosis is not clearly as to criteria; specialists are having seminars to compare what they think is relevant in a history and physicaL exam. I plan to ask my surgeon about this and likely you should ask an EDS-savvy specialist, too.
My symptoms got dramatically worse over thew last few years, since I was injured in a chiropractic maneuver in C 6-7 and likely there, too, since after the injury--never before--I had pain in my upper neck when I rested my head onto a headrest or chair back, It has been popping and "crunching" for a year or two.
I, too have hypermobile, classic and the indeterminate mixed type. I wasn't aware of he vascular aspect in me, except easy bruising, but am finding that most IVs and blood draws end with a hematoma (deep, often big bruise) when the technician presses down with a cotton pad even fairly gently anytime before the needle or IV catheter is ALL the way out.
That's only part of it, but have any of you reading this noticed the same thing, and/or that adhesive tape can strip a full layer of skin or cause a huge dark "hickey" when removed?
Hi Joyce,
Have you had any luck in getting a diagnosis for your problems?
I, too, am having very similar problems (without the EDS). Squeezing, nauseating pressure in the back of the neck/throat, back of the skull and neck pain, tinnitus, dizziness, nausea, numbness into both arms, and blood pressure changes - all resulting from a low impact car accident 2 years ago.
I have 2 torn cervical discs and a bulged disc at T4 but otherwise my MRI's and CT's have been unremarkable. No one has been able to figure this out. Its very frustrating.
Please let me know if you found any help on your end.
Thank you,
Allison
Have you had any luck in getting a diagnosis for your problems?
I, too, am having very similar problems (without the EDS). Squeezing, nauseating pressure in the back of the neck/throat, back of the skull and neck pain, tinnitus, dizziness, nausea, numbness into both arms, and blood pressure changes - all resulting from a low impact car accident 2 years ago.
I have 2 torn cervical discs and a bulged disc at T4 but otherwise my MRI's and CT's have been unremarkable. No one has been able to figure this out. Its very frustrating.
Please let me know if you found any help on your end.
Thank you,
Allison
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