My docs did an MRI/MRA and found that my C4-C7 vertbras are crushed and the discs are all herniated and causing spinal stenosis and possible compression of the vertbral artery that runs through there. They are now stating that my ear pain, jaw pain and severe vertigo may all be due to what is known as cervical vertigo, which is spinal impingement and or compression of the vertbral artery which causes sympathetic referred nerve pain and vertigo which effects the ear canal deep in side and the jaw. The cure is to have the cervical area fixed. I have an appt next month with a neuro surgeon and I do know that if I lay wrong or tip my head back and up I can inflame everything and make myself so dizzy that I cannot stand up straight without falling over. I also suffer from severe neck pain and I am unable to lay flat without causing a severe flare in the ear and jaw. My pain is very head positional DOES anyone else have THIS too?
Now I can also set off my pain by having the wind or water get in my ear too so I am not sure if my docs are right or not,. I would really love to hear from anyone who may be like me!
I wrote about cervical disc degeration and TN. I have inflammation in connective tissues, from systemic lupus, in my upper cervical spine and have been wondering for a LONG time if my TN is associated with that. I feel like if I can find the cause I can find treatment. This disorder is a nightmare. Sorry you suffer. Sincerely, Julie
Jujubeee - because of that thread I was able to have a pretty lengthy discussion with my neuro about the cause of my TN and if it was an appropriate dx vs PHN. During that discussion she said that some of the causes of TN are connective tissue disease, and lupus. Thank you for a great discussion - I learned a lot from it.
That is really interesting for me as I get ear pain as part of my TN (it started the same time as the TN, I think it's part of my ATN as the pain moves around along different branches of the nerve including the ear one, I'll have pain somewhere (though always only one branch at a time and that includes the jaw, the jaw is like needles being stuck in). And when I had my MRI they said it was normal apart from a thyroid nodule and a very worn out cervical spine. The doctor said it's like an old lady's cervical spine and it's not critical yet but expect neck problems. And I'm only 34!
So that's interesting that you have cervical spine issues and ear and jaw pain too.
Yes I have cervical stenosis according to a CT Scan and MRI. I also suffer from vertigo which is only triggered from boating, flying and elevators. It is not severe vertigo just a bit skinny and it feels like I am on a rocky boat. My neck gets sore and it is hard to hold up as the day progresses. I also clench my teeth badly at night. My ear pain is 24/7 without tegretol and I find wind is the worst trigger even on the tegretol. Sounds like a connection to me.
My vertigo I am pretty sure is from the gabapentin. I end up with a bad postural drop (where your blood pressure plummets) if I bend down and stand back up again. Almost to the point of blacking out or vomiting. I forget about it and then go all clammy and woozy and think oh bugger why did I forget about that! Especially annoying if I am at work (a hospital might be the right place to be if I do black out but would rather not have my colleagues fussing over me!) :)
spinny, not skinny -- I wish vertigo made me skinny -- lol!
collette said:
Yes I have cervical stenosis according to a CT Scan and MRI. I also suffer from vertigo which is only triggered from boating, flying and elevators. It is not severe vertigo just a bit skinny and it feels like I am on a rocky boat. My neck gets sore and it is hard to hold up as the day progresses. I also clench my teeth badly at night. My ear pain is 24/7 without tegretol and I find wind is the worst trigger even on the tegretol. Sounds like a connection to me.
Hey Jolie, what did your neurologist say at your appt? My first TN attack came after a sideways whiplash, then in February I fell on my neck and shoulders, and my pain got worse and spread to other cranial nerves. I had to educate my Dr. about that being a cause. Our own Jujubeee (Julie) is doing a blog on causes of TN and cranial neuralgias, and here's what she posted about cervical neck injuries and TN. (Look at the turquoise print, it's the most important part.) http://bit.ly/NdAQbc
Sorry I have been off for quite a while due to alot of health problems but I wanted to get back on here to let you all know that my doc said that it does sound like it is being caused by the vertebras in the spine but after doing more MRI's he can not pin down where the nerve is being pinched so because of that he will not go in. Instead he is putting me in physical therapy with traction to see if it helps, I will actually be starting that tomorrow. I am really afraid it is going to make the pain worse especially since right now I am in a bad flare due to some serious house cleaning, where I used my right arm alot and set things really off. It is very typical for me to set the pain off by sleeping wrong or by using my right arm or raising it above my head I actually think that it is not in the cervical but in the T2- T3 part of the back. If this does not work I will be looking for another doctor to consult about going in and just doing exploritory surgery to see what it really looks like in there. My doctor did say that the MRI's do not always show everything so they really are not very reliable when it comes to this kind of stuff, yet he will not attempt surgery knowing that mine is definetely due to the back. This has to stop for me because I do not do well with the pain and have no real pain control due to drug intolerances and allergies and this could be fixed easily by removing the bulging disc, so I will se how it goes over the next couple of days with theray. I will try to keep you informed.
Jolie, I hope the traction works. It separates the vertebrae slightly so if something is pinched, you will get some relief during traction. Hopefully, whatever nerve it is, will move slightly, maybe so it won't be pinched anymore. If the physical therapy traction works, there are home treatments that act like traction. The lowest tech one is a cervical collar, like those used for whiplash. That exploratory surgery scares me silly, because every time they open you up and move things around to look, it all develops scar tissue which can entrap nerves, tendons, muscles, all sorts of complications. So I hope it doesn't get to that point. Many people have had periods of remission that last months and years, so I hope that happens for everyone on the site.
Jolie, I’m right here with you. I also have damage in that area (herniated discs and bony spurs. I have trouble laying flat too and getting dizzy. I have an area of pain and the top of my cervical spine that hurts like a muscle pull when I change position. (so don’t do that-my old doc would gladly say, lol)
There’s definitely something going on back there (positionally speaking) that stirs up the GN in the ear on the that side, but I also flare from triggers like pain to teeth.
It’s all so confusing. I’m interested in what your neurosurgeon says.
Jolie, I’m right here with you. I also have damage in that area (herniated discs and bony spurs. I have trouble laying flat too and getting dizzy. I have an area of pain and the top of my cervical spine that hurts like a muscle pull when I change position. (so don’t do that-my old doc would gladly say, lol)
There’s definitely something going on back there (positionally speaking) that stirs up the GN in the ear on the that side, but I also flare from triggers like pain to teeth.
It’s all so confusing. I’m interested in what your neurosurgeon says.
whoops, my computer flaked on that. Sheila makes alot of sense about once they do the exploratory but I totally get that the pain is overwhelming. Please keep us informed how you are doing Jolie. I'm wearing a cervical collar right now and it reminds me not to turn my head (hurts to do so) ;) Love Ya, Julie
Yes I have severe bilateral cervical neural foramina- herniated discs and bone spurs, esp C4-C5. Just did a bunch of new tests and MRI (had bad neck for last five years). Been treated with rfa's, cortisone, glycol and nerve blocks. Have several radiculopathies and incontinence, also gait problems (weeble wobble,lol) and balance issues. Worse of it is I have occipital neuralgia, the left side of my head goes numb, and of course I'm here cuz I have TN and have had a few bouts of GN as well. Also recurring bells palsy, and other cranial neuropathies. In my case its from birthdays (osteoarthritis) and its complicated by inflammatory arthritis from lupus. Idk if THIS is why I have TN or not but I was referred out to a neurosurgeon who I see next week so we'll see if I get the foraminatomy (sp) surgery and it fixes it. Wouldn't that be LOVELY? lol
ps took the incontinence to really get me off my butt. I decided to see another neurologist (saw mine 8 yrs) for another set of eyes, which is good since I'm obviously much worse. The radiculopathies were so bad last yr I was doubled over screaming...and Jolie...HELLO, we meet again, my friend!!!! Love Julie
Jolie, how bout an update? It's Julie. As my neck worsens, the more pain in my ear/head/neck area. I am seeing a neurosurgeon/orthopedic surgeon for help referred FINALLY by my neurologist.
Ditto on all of this for me. I have had 5 car accidents all involving neck injury. I know that trauma is to blame. My MRI shows degeneration in all levels of my neck and a vessel on my TN.
Porcelina- I also have been fighting bad viritgo where it turns into more like you said" postural drop", but it finally happened in the doctors office after a painful botox treatment. I blacked out and had a seizure. They told me it was "Vasovagl response" Fainting. So getting up and down and extreme spikes in pain were causing this pass out, vomit, not always pass out, but must get on floor before fall down bad horrible feeling of nausia, etc.. So has lead me to believe that what I thought was all virtigo was actually something else. (read up on how to stop your self from fainting-cause is all your blood in body pooling up in your legs, causing blood pressure to drop to say 20/80. So they say to keep your fluid intake high and salt high-almost hypertensive. When you are feeling it coming on lye on your back with your legs up on a chair, making it impossible for the blood to pool in your legs.Their are more tips if you google VASOVAGL attack or response) When I began keeping my fluids and salt higher I noticed a difference in the # and severity of the episodes. When I have a bad spell putting my legs up stopes the nausea and horrible feeling very fast making recovery speedy.
Porcelina said:
My vertigo I am pretty sure is from the gabapentin. I end up with a bad postural drop (where your blood pressure plummets) if I bend down and stand back up again. Almost to the point of blacking out or vomiting. I forget about it and then go all clammy and woozy and think oh bugger why did I forget about that! Especially annoying if I am at work (a hospital might be the right place to be if I do black out but would rather not have my colleagues fussing over me!) :)
I also have the passing out feeling often and do faint easily. My ENT specialist said that he believes my ear pain is a combination of what is causing the TN, my neck issues and that I clench my teeth. I am starting to take homeopathic (spigelia) and it is helping to reduce the ear pain. My TN is greatly reduced since I have been treating my Lyme complex disease. I also faint from epinephrine which is what the dentists use to freeze your gums. They use a different anesthetic to which I don't react to.
This is me to some extent. I see a Chiropractor for my severe scoliosis. I've been in multiple car wrecks. Had my skull cracked...all back 30-40 years ago. Now the injuries are rearing their ugly heads. I prefer to keep seeing my Chiro. He is amazing. He told me that I could have surgery but that in my case it would involve a lot of rods and screws and what-not and he believes my pain would just take another route...not be cured. So I'll stay with adjustments...over the past 2 years I have had amazing results/relief from these.
I have had the vertigo problems for at least a decade. It is worse now because of the many meds and combinations of meds. I've been passing out, vomiting, whether lying down or sitting or going from those positions to standing. Have to have someone help me or just monitor me when I go from one building to another. Massive vertigo from time to time just when I am in bed...ruins the nights sleep, Excessive sweating with the vertigo. I cannot pick up my grandbabies anymore...I'll tip over with them. Have to have my son or somebody else get things from lower cupboards etc. The vertigo also can bring on a migraine or at least I think it does from time to time, I have so many triggers.
Wind and water? The wind definitely, cold for sure, after a shower,(which doesn't hurt my ear) the water in my ear will get cold and I have to quickly dry it out with a q-tip because it hurts until I do.
I do get relief from the vertigo for a time after adjustments and that's great but the main reason I see a Chiropractor is for my scoliosis which is so severe that I have ribs that go out quite regularly, hips go out and of course my terrible neck and back pain. I see him once a week and my body is learning how to go back in the right place by itself...very cool! He can take away a migraine, and get my neck in a place where I swear, for days I feel euphoric...my damn ear still hurts, he can't fix that but some pain relief is better than none. I think I am going for Gamma Knife for my Genicular Neuralgia next week...everyone is conferring on this...in the meantime I am going to see Doc Mike for another adjustment so that I am in that euphoric, straightened out state which I think will have me in the best position, so to speak, for the procedure. I don't know if this info helps you at all. I just know that all I've investigated about my crappy back and neck tells me that surgery is NOT the route to go....time will scar up and move things around again and I will be in a more difficult position to be helped. Oh, I also used magnetic earrings for a while and it cured my vertigo overnight practically ..this was before I developed the GN but I've had vertigo problems forever...almost! PeacenLove to you and be sweet to yourself. I pray you find relief soon. Always~Laurel
Hi All! I had a cervical anterior fusion C4-5 and C5-6, and I have occipital neuralgia and tn. (and systemic lupus) but anyway, that was two weeks ago. My surgeon used adult marrow stem cells for disc material. My specialists, neurologist, orthopedic surgeon, pain mgmt doc and GP all concurred that alot of my issues come from the mechanical problems in my neck which are magnified by my lupus which causes inflammation in the surrounding nerves and blood vessels.
That said, it took me YEARS to come to this surgery and doctors that agree. It wasn't easy to get here.
So I'm two weeks postop, I'll include some pics. I haven't had more than a twinge of any nerve pain from the surgery and the on and tn are QUIET!!!!!! If it keeps on this way, my surgery can be considered a success in that area. For any doctor that doesn't think that inflammation and cervical spine issues can cause ON or TN..I may be walking proof that they can.
This is AWSOME!!.
I have been explaing to docs for years that my TN pain triple increased after a my newest neck injury on top of 5 car accidents. But no one seems to see any relation or truly want to know why I have TN & ON. They really have not even explored why hearing hurts my ear hurts.
So happy for you. I am so much better after my MVD. My pain is about 70% better most days.
