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A Diagnosis... Finally? Occipital Neuritis and Dizziness


#1

I’ve been putting together pieces of the puzzle the past week and think I may finally have a reason for my dizziness. I’ve been battling left-sided head pressure/tingling, dizziness, tinnitus, neck and ear pain for over 15 months now. It’s been progressive except for a three month period this spring when I felt perhaps 75-80% better.

My symptoms started a day or two after I was doing some fairly aggressive sit-ups, pulling up on my neck and holding my head up multiple times. It was then that I started feeling a remarkable pain in the back, left side of my neck. After two weeks, my head started tingling in the back left side, and this sensation eventually started popping up over my left ear and near the top of my head.

Fast forward many months and many doctors, and a dentist gave me steroid injections into the occipital area in multiple places on the left side of my head. After six hours, I felt pretty much normal. This lasted for 24 hours and then the dizziness came back five times as bad as it was before. It stayed at that level for two days before getting back to my usual state of horrible. I chalked the temporary improvement up to a coincidence since I was told the steroid would take many days before it would take effect.

Fast forward a couple more months with continued complaints of left-sided neck pain. I finally had a cervical MRI, which showed pretty bad cord compression on the left side of C6-C7. (I have multiple issues in the levels above that as well, but these were not bad enough for intervention.) I had also had some other issues and muscle weakness in my left arm, so I had a fusion at that level. After the surgery, my dizziness was better and the tilting sensations when I lied on my side went away.

Over the next few months, the dizziness continued to get worse. I had an injection into C2 in my neck in January or February. I remember the doctor telling me at the time she was going to turn the needle and shoot some of the medication at the occipital nerve since it runs through c2. The dizziness was worse for a couple of days after the injection, but other than that my symptoms did not change. Until… about 5 or 6 weeks later, the dizziness (and head pressure) remarkably just faded into the background. I had been told the steroids would take a couple of days to a couple of weeks to work, so I figured the injection had nothing to do with my improvement due to the amount of time that passed.

I felt overall pretty well for three months, and I was so excited to get back my life. In mid-June, out of the blue, the head pressure came back worse than it ever has been. A couple days later, the dizziness was the worst I’ve ever experienced. This has been going on now for over a month.

I did some research and looked at the dermatome map of where my strange head sensations are located. They are in the pathway of the occipital nerve. I also saw some research linking occipital neuritis with dizziness and tinnitus due to the close proximity of the nerves in the c2 area. The most common reason for occipital neuritis is an injury to the back of the head or a whiplash injury or repetitive neck motions (like my sit-ups?) I further read that occipital neuritis symptoms are worse when lying down. (Now, I’m wondering if my temporary improvement after my c6-7 fusion was because I slept upright in a recliner with a cervical collar for the first month.)

I don’t have light sensitivity, but I read that pressure behind the eye (which I have) and light sensitivity can be caused by occipital neuritis.

Anyway, I have a preliminary appointment tomorrow to see the pain management doctor who says he’s going to try to do the c2 injection on Friday. He’s a colleague of my husband, and when they spoke, the doctor was very familiar between the relationship with damage to the occipital nerve and dizziness.

I don’t want to get my hopes up too high that I finally have an answer, but everything sure makes sense. I read that migraine pain and occipital neuralgia pain can be difficult to differentiate, so I posted this information in case anyone here is interested. Even if I feel better after the injection, I’m not sure this is a long-term answer to my problems. I will be sure to post and provide follow-up as to if the injection helps in a month or two…


#2

Here’s a link to an article about Occipital Neuralgia with a pertinent excerpt below:

pain-consultant.co.uk/pdf/Oc … ralgia.pdf

Occipital neuralgia symptoms include aching,
burning, and throbbing pain that is often unilateral and
continuous with intermittent, shocking, shooting pain.
The pain usually originates in the suboccipital area and
radiates to the posterior and/or lateral scalp. Occasionally,
patients report pain behind the eye on the affected side.
Pain may also be perceived over the neck, temple, and
frontal regions.

Pressure over the occipital nerves may
amplify the pain, but there is usually no clear trigger.
Furthermore, some patients may have a positive Tinel’s
sign over the occipital nerve. Occasionally, neck move-
ments (eg, extension and rotation) may trigger pain. At
times, patients with occipital neuralgia may experience
symptoms similar to migraine or even autonomic changes
characteristic of cluster headaches. Associated symptoms
include posterior scalp paresthesias, photophobia, and
dizziness. Many patients with occipital neuralgia report a
cycle of pain-spasm-pain.


#3

I have occipital neuralgia and have done dry needling (which gave me pain straight to my ear…imagine that) as well as massage and having my VRT see that my C2 is in alignment! I still can’t put my head down on a hard surface without real discomfort. But originally I couldn’t even sleep on a soft pillow! If I touch the occipital area at times it is very tender. I am glad you are finding some answers. Between the Inderal for my migraine head pain and managing my neck muscles it has helped the dizziness. I have degenerative disc disease and herniated discs with a lot of clicking, etc in the bones. Keep us posted and good luck :slight_smile:


#4

Thank you, Teddy. Well, I saw a new ENT yesterday. She is my husband’s colleague and a very kind lady. The first thing she asked me was if I had been tested for Lyme Disease! I couldn’t believe it due to all the recent talk on this board re: LD. She told me about one of her patients with weird neurological symptoms (and dizziness) who recently tested positive for Lyme.

Personally, I don’t think LD is my problem, and by the end of her examination, she agreed with me that occipital neuritis is the most likely cause of my issues.

I also had an appointment today with a doctor who did a fellowship in spine rehabilitation. He specializes in pain management and physical rehabilitation. He, too, felt very strongly that the sit-ups (yanking up on my neck like an idiot) damaged the nerves that run through C2. He explained he has had lots of dizzy patients, especially after suffering a neck injury (frequently whiplash). I have an appt tomorrow morning for a block of the occipital nerve ganglion at c2 in my neck. It will be interesting to see if I have the same improvements with my dizziness as I did last time.

If the blocks don’t help, the ENT told me she would write me a prescription for propranolol to try migraine prevention as well as an order for a Lyme test…


#5

Just an update… I had the nerve block at c2 (nerve ganglion and occipital nerve) one week ago (Thursday) early morning. I was told the steroids usually take 3 to 5 days (but up to a couple weeks) to kick-in, but the lidocaine would have immediate effect. Right after the procedure, the left side of my head was blissfully numb, but by the time I got home from the surgery center the intermittent pressure, tingling and strange burning/cold sensation on various places on the left back & side of my head were stronger than ever, but in a weird sort of way. The following almost two days were pretty good head/neck pain and dizzy-wise (Friday until Saturday evening).

The dizziness and head pressure, tingling, weird sensations were pretty bad Saturday evening until Tuesday morning. When I woke up Tuesday morning (day 5) I felt dramatically better… very minimal head issues and almost non-existent dizziness!!! This lasted for 2 days, and then the head pressure came back along with the dreaded dizziness after I walked-up a long flight of stairs at a baseball stadium. (Exercise is known to aggravate ON…) However, the fact that I had SOME change from the injections is diagnostic. I’m hoping in another month or so the dizziness will resolve for three months since that is what happened after my last injection. (My theory is the steroids took time to shrink-down whatever is inflamed.) My left ear is still ringing, but the intermittent stabbing ear pain and ear fullness/crackling sounds are gone.

I am now 100% sure my dizziness resulted from damage to my neck doing sit-ups, causing occipital neuritis. The problem now will be what I can do, if anything, for a long-term fix. I will be seeing the doctor again for a follow-up next week and will ask more questions about the exact connection between ON (which can mimic migraines) and dizziness. The doctor previously mentioned “cross-talk” between nerves that run together in the c2 area.

After researching ON and seeing in black and white ALL my symptoms (ear pain, tinnitus, dizziness, neck and head pain in the occipital nerve pathway, point-tenderness in the neck) I can’t believe I wasn’t diagnosed by any of the doctors I’ve visited in the last 16 months, with the exception of one physical medicine and spine rehab doctor. Among them were 2 oto-neurologists, several ENTs, 2 neurologists, 2 neurosurgeons and several primary care doctors. What the heck! I even gave them the mechanism of injury. I can’t believe all the BS they’ve put me through with 3 rounds of vestibular testing, all the drug trials and all the blank stares when I asked them what they thought was wrong with me. Surely, I’m not the only patient that has experienced this!

I will continue to update on this forum, in case anyone is interested.

buzzle.com/articles/occipita … ptoms.html (not exactly a scientific publication…)

aans.org/Patient%20Informati … algia.aspx

ninds.nih.gov/disorders/occi … ralgia.htm

(Keep in mind, that it is not unusual for occipital neuralgia to start as a vague pressure or tingling, usually on one side of the head, often originating in the neck, and sometimes felt behind an eye causing light sensitivity.)


#6

Thanks for the update! Mine has been pretty bad lately and I’m going to be on vacation soon. I’ve been having trouble sleeping on my head without the pressure causing dizziness and bending over is just awful. Do you have any issues like that?

Sure hope you feel better for the long haul. This stuff sucks!


#7

The following excerpt is not from a scientific journal, but it is interesting nonetheless. (It’s from a tab in the first website I linked above.)

Can Ear Pain Cause Neck Pain or Vice Versa?

Yes, ear and neck, both are inter-related anatomically. The arteries and veins that supply and carry blood from the ear, pass through the neck. Some branches of vestibulocochlear nerve are present in the ears as well as the neck which is why pain may be felt in the ears and in the muscles of the neck at the same time. Apart from this, sternocleidomastoid (principle neck muscle), is in proximity to the ear bones and thus when a pain arises in the ear, it may be felt in the neck and vice versa, in most cases.

Read more at Buzzle: buzzle.com/articles/ear-and-neck-pain.html


#8

I have connected more dots here as to why my symptoms came back suddenly after a 3 month period of drastic improvement following a steroid injection at c2. Two days before the unilateral head pressure and tingling returned (followed 2 days later by full onset of the dizziness), I was on vacation and spent several hours each evening lying in bed with my laptop. I had propped-up my head on several pillows with my neck was bent forward using the computer. (This was a position I had been avoiding at home ever since I had my neck fused last fall.) (I did this for the 4 nights I was away…) I had assumed my issues returned when the steorid “wore off.” In hindsight, I believe I reinjured the occipital nerve by lying in that neck bent and forward position for hours…

Moreover, the day the dizziness returned (2 days after the weird head sensations returned) I had spent hours with my head forward and down spraying vinegar on weeds in our garden. That night (and the next), I had overwhelming fatigue and the dizziness was some of the worst I had ever experienced.

I started piecing this together today after reading an article stating one can suffer from occipital neuralgia after a sustained period of having the neck down and forward.

So sorry to be neurotic about posting here, but after suffering so much for 16 months and not receiving any help from the medical community (by and large) I feel a great sense of relief in finally understanding what has happened to me. I also wanted to post in case someone on this forum has a similar etiology for their vestibular issues. When I first joined this board, I read through each and every post hoping to find a connection between my symptoms and someone else’s.


#9

I, for one, appreciate the posts on this subject, KennedyLane. I’m not sure where on the spectrum I fall (i.e., whether it is ON or not – pain does not seem consistent with that), but I am highly confident that the neck aspects of all of this, as well as the positioning that you reference, are either causative or contributory to my problems.

I agree that it is great to share information on the forum. Those that are not interested in a subject can take their cue from the police officer who says, “move along folks – nothing to see here.” :wink:

Andy


#10

It is now 2 1/2 weeks after my second block at c2 and of the occipital nerve. I
woke up on day 15 and my head pain was completely gone. Since my problems came
back mid-June after a 3 month hiatus following my first injection, I had been
having progressively intense unilateral pressure and tingling sensations and
then intense burning on the left side of my head (back, behind the ear, on the
scalp above the ear and at the top, left side of my head). The papers given to
me by the surgery center said the steroids in the injection should kick-in 3-5
days post-injection. However, I’ve read elsewhere that the injection can take
2-3 weeks to have an impact. My neck pain is still present and does not seem to
be much better.

I’m still dizzy (although I had 2 days of some reprieve 5 days post-injection),
but it is different. It’s not the violent and exhausting bobbing and rocking I
had been having. Fingers crossed it will continue to improve. Last time, it
took 5-6 weeks for the dizziness to improve by 75-80%.

I may have mentioned this before, but I’ve recently had 3 physicians mention the
connection between cervical issues and dizziness. One of the physical rehab
physicians told me that even lower cervical stenosis can cause dizziness due to
changes in the CSF flow. She also said she has had many patients with issues at
c1 and c2/3 (upper cervical) with dizziness that resolved with injections. (Of
course, I am not advocating that everyone run out and request an injection; I’m
simply passing along the information in case it’s of interest to anyone.)

I’ve had other strange, intermittent symptoms in my face(twitching left eye,
strong pain in my top, left gums/teeth, left cheek tingling, weird feelings on
the left side under my mouth), and the mechanism of these sensations was
explained to me as well. Apparently, the occipital nerve ganglion interconnects
with the trigeminal nerve ganglion (I think she said in the brain stem or maybe
just at c2?) so it’s not unusual for someone with occipital neuralgia to have
pain referred to any of the trigeminal nerve branches, especially the area
around the eye, which is innervated by one of the TN branches. (Other TN
branches go to other areas of the face…) These sensations have all
disappeared since my c2 injection.

I asked her what the connection is between the upper cervical area and ear/dizzy
problems. She told me there are sensory nerves for the ear that are in
proximity to the occipital nerve origins at c2 (I’m paraphrasing) as well as
neck proprioceptors, which are nerve receptors in the neck muscles that feed
information to the central nervous system (brain) regarding where one is in
space. My feeling was that this subject is not well understood. Here’s an
excerpt from and a link to an interesting case study from Taiwan that mentions
the relationship of the upper cervical spine to dizziness and tinnitus:

“The possible causes of occipital neuralgia has been discussed elsewhere.,4 but
it is important to consider other causes of occipital neuralgia as migraine and
cluster headaches as well as diseases that involve the C!, C2 and C3 nerve roots
may be easily confused.5 These roots receive branches from the spinal accessory
nerve and the superior sympathetic ganglion. There is also communication between
the roots and the trigeminal ganglion and probably the acoustic and vestibular
nerves which may explain some of the confusing symptoms such as blurred vision,
nasal stuffiness, tinnitus and dizziness.”

pain-manage.org.tw/ex/ex10.htm

One neurologist I saw mentioned there was “cross-talk” between the various
nerves that run through the upper cervical spine. (I guess that’s the same
thing as “communication” between the nerve roots as referenced above.)

I’m certainly not advocating that everyone on this board has cervical issues
and/or occipital neuritis as the root of their rocking/bobbing/dizziness. (I’m
well aware of the controversy that exists in the MdDS and MAV communities
regarding this… ) However, a couple of people asked me to pass along the
information my physicians shared so that is why I am providing this follow-up.
I’m just telling my story as it unfolds. I’ll check in again and let you know
if there is any further improvement with my rocking/bobbing. Oh, and my left
ear is still clear; it has not felt “full” nor plugged since I had the
injection! (With the exception of that 3 month period after my first injection,
2 1/2 weeks is the longest I’ve gone without that annoying full sensation and
clicking/popping in my left ear.) I also haven’t had that awful stabbing left ear pain since I had the injection. (Unfortunately, I still have intermittent tinnitus, a symptom that never went away even when the dizziness was improved this past spring.)


#11

It’s now 3 1/2 weeks since my last injection, and I just wanted to provide another update. I essentially feel really well. I noted a big improvement with my dizziness about a week ago or so. Last Tuesday (5 days ago), I flew from the US to South-Eastern Europe, experiencing muliple bumpy flights and crazy cab rides. The day we arrived was horrific. The dizziness was worse than I had experienced in some time. (Our bags were left behind in New York by the airline so we needed to go shopping for clothes and toiletries. I recall walking through the mall that first day feeling like I was going to walk into walls!) My children and husband, however, all said they felt like they were still on a turbulent plane ride for the rest of the day so I’m sure there was some Mal de Debarquement going on for me as well. The next day and all days since then have been fantastic! I can lie down in bed without feeling the rocking and walk without feeling like I’m on a trampoline. Turning over in bed used to cause me great distress, but I can do so without any issues now.

The first full day after arrival in Europe (and the next day as well), I climbed a steep hill near our hotel and the burning at the top of my head felt like it was making a come-back. I popped a couple of Advil twice that day and the next, and it’s been gone ever since.

I haven’t had tinnitus for 5 out of the past 6 days. (I woke up with it this morning, but it disappeared within an hour or so.) No stabbing ear pain except with descent during the flight. I had about a day and a half when I felt like my left ear wanted to clog-up again, but it never really did, and it still feels pretty well. My neck pain is almost gone, and I really have to think about it to notice any issues there as well. Except for those two days of mild burning at the left, top of my head about 4-5 days ago, I haven’t experienced any pressure, tingling or any head pains at all. The twitching in my left eye has completely disappeared. It hasn’t occurred at all in 3 1/2 weeks, and the intermittent, strong pain in my top, left teeth remains gone as well.

I have more injections scheduled for later in the month, this time adding in both sides of C1 as well as the left side of C2. (Last time I only did the left side of C2.) If I continue to improve, I may cancel the appointment and just wait to see what happens. I’ll keep updating this thread in case it’s of any use to others here…

We’re flying home tomorrow. Not excited about that given how horrible I felt after that plane trip across the Atlantic (or over the pole?).


#12

Thanks for the update. I appreciate your feedback to see how things are working out for you that may help others, like myself, who have the occipital neuralgia also.


#13

I have just found this post and found it very interesting. I was first diagnosed with basilar migraine many years ago as my 3 day migraines were always in the occipital area at the back of the head, around the same time I was diagnosed with menieres disease that had burnt itself out, then endolymphatic hydrops, more ENT tests which were generally inconclusive and more migraine specialists, final diagnosis vestibular migraine (inner ear lesion and endolymphatic hydrops).

Along with the 3 day occipital migraines I had pressure and tingling above the ears (temples) pressure on top of my head, tingling around the mouth, blocked nose, tinnitus, much of what you have mentioned.

After having these 3 day migraines continuously for years I started to develop a burning pain on the right hand side at the back of the head where the migraine had been, I was always left with this after the migraine, I called it neuralgia at the back of my head, no painkillers would touch this and I couldn’t lay my head back on the pillow (difficult as I have to sleep that way as if my head falls to the left or right I wake with vertigo).

Nowadays I don’t get the 3 day migraines, but often, I wake with just the neuralgia on one side in the same place it was at the back of the head and now a migraine always develops after it (I no longer get the temple pressure either) things have improved. So things have changed, but it is interesting to see that the injections are helping you. I wish I had known this years ago. Also, I wonder if I am left with some sort of inflammation at the back of my head from the continuous migraine in that area.

Christine


#14

I could see where the injury/malformation or whatever could easily cause a positive feedback loop with a migraine reaction. Migraine, triggered by increased stress and inflammatory hormones and steroids in the body causing more inflammation and stress, causing more pain and inflammation triggering more migraine activity. It would soon become a chicken or egg syndrome. And, in honesty, it would likely occur in ANYONE experiencing the injury, whether originally prone to migraine or not. The proximity to centers of the brain responsible for vestibular function and sensory responses would indicate that any inflammatory response/injury would invoke a cascade that would be difficult to interrupt.

I wonder if a combination of steroid injections to treat the injury and migraine medications to interrupt the neuronal cascade would yeild a better result in closing off both ends of the feedback loop?

Just a question of curiosity…not a recommendation for action necessarily.


#15

Just an update… I went ahead and had the 3rd round of cervical injections around a month ago. I had been doing pretty well, for the most part, until recently.

I had a follow-up appointment last week at the physical rehab doctor’s office. During the appointment, she manipulated my neck and had me bring by head as far down, back and side-to-side as I could. In the car on the drive home, I noticed the return of some really faint tingling & pressure in the back, left side of my head/upper neck and later-on above my left ear. Two days later, my left ear clogged-up, and the dizziness was back the next day.

The tingling/pressure and clogged ear sensation had been gone previously for some time. Maybe it’s a coincidence that everything started to come back within an hour of having my head pushed around, but I really doubt it…

How frustrating! I feel like whenever I started making progress, something causes me to go back to square one. (Two regressions were within days after taking flights where I had stabbing ear pain upon descent, and the third was most recently after my neck was pushed forward and back.) My next step? While I do have some reservations about possibly making things worse, the ENT is going to put a tube in my left ear next week. Not sure if it will help…


#16

Thank you, LOVE. I am always a little hesitant to provide updates since I understand there is some reluctance on this board to believe that neck issues (outside of strictly defined “cervico-vertigo”) can cause dizziness. I am just telling my story as it unfolds, and if it helps some people, that is wonderful.

As I mentioned last week, the left-sided tingling, pressure and odd burning/cold sensations in the occipital nerve pathways are back. (Started back up again after my head/neck were manipulated…) I can’t get in for another round of injections (left side of C2, both sides of C1 and 3rd occipital nerve block) for another month. I’m popping some ibuprofen a couple times a day, and that seems to help. My left ear has that intermittent clogged sensation/popping/crackling. That, too, started back up a couple days after my neck was moved around. Naturally, the dizziness is back…

I’m going in tomorrow morning for a myringotomy in my left ear. That’s where they make the slit in the ear drum but don’t insert a tube. The ENT said the hole should stay open for several weeks by itself. If I think it’s helping, she’ll insert a tube at some point to continue to ventilate the left middle ear by preventing the hole from closing. The ENT told me that some people feel dizzy for a day or so after having the slit put in the ear drum. Great.

My worst fear is that it will make me worse, which is always a risk… Will provide an update, in case anyone is following my progress…


#17

Kennedy-

Thx for the updates. My neck is back into spasm and more occipital nerve flare ups and the dizziness is worse. I’m seeing a spine specialist now and doing PT as my low back has hit the skids too. ugh

Good luck to you tomorrow during the middle ear procedure. Hope you don’t experience any dizziness. I’ll be anxious to see how you feel after this is done.


#18

Thank you, Teddy. Have you tried blocks/injections for your occipital neuralgia? They worked wonders for me! Do you have any problems with your ears (fullness, popping, tinnitus)?


#19

I have had some dry needling done and the pain went straight to my ear! Yes I have popping, crackling, full feeling, high pitched noise and blockage. I have had trigger point injections but no injections done into my spine. This may be my next step. Doing PT 3x week for 4-6 weeks right now.


#20

I tried dry needling, too, but it didn’t do anything for me. I also tried PT. That didn’t help me, either, except for the technique used by a substitute PT who was filling in for one week. I felt significantly better that whole week, but no one has been able to duplicate that effect. In fact, otherwise manipulation of my neck has seemed to make me worse. Let me know if PT works for you, and, if so, what technique was used.

I highly recommend spinal injections if you have ON. I’ve had excellent results. In fact, I had all the ear symptoms you mentioned, and they all went away (except the high-pitch tinnitus) pretty quickly after the blocks.

After reading multiple papers, my personal working theory is that due to injury, some people have irritation in the neck that triggers a cascade of inflammatory reactions that causes eustachian tube dysfunction. The ETD, in turn, may lead to dizziness due to pressure imbalances between the middle and inner ears. I have wondered if there is a similar process in people with migraines (i.e., inflammatory chain… ETD…vertigo/tinnitus).