A Diagnosis... Finally? Occipital Neuritis and Dizziness

Specific Illnesses & Conditions
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Another update for anyone who is following my progress… I had the myringotomy (hole in eardrum) two weeks ago today. Right after the procedure and the entire next day I felt great, dizzy-wise. However, as the ENT warned could happen, the tinnitus in that ear has increased along with a muffled-hearing sensation and horrible clogged-ear sensation. These effects have been difficult to get used to, to say the least. I must say I am quite surprised that the clogged-ear sensation has increased so much. I had really expected this to go away after the myringotomy since the pressure in the middle ear should be equalized with that in the external ear canal. (I read online accounts by others with eustachian tube dysfunction complaining of the same clogged ear/muffled hearing sensation with a myringotomy or ear tubes (PE/grommets). Not sure why that is.)

The third day, I experienced MAJOR fatigue (as I always have immediately proceeding an increase in dizziness), and then the dizziness was worse for a couple days before settling down to a more mild state of dizziness. A week ago, however, I fell while walking the dog and slammed down into a concrete sidewalk. (The dog started running after another dog, and I held onto the leash a little too long!) I ended up in the emergency room since my left knee, in particular, was swollen massively. (I ruptured the bursa, which is the fluid-filled sac inside the knee.) They gave me a shot of Toridol, which is a very potent anti-inflammatory, and I really didn’t feel too bad the rest of the day.

The next day, however, I woke up with the most horrendous pain in the neck I’ve ever experienced. I had my regular point-tenderness on the left side, but magnified 20 times. For the first time in my life, I couldn’t turn my head to the left at all. A couple days later, the massive fatigue returned for two days along with another huge increase in the dizziness. It’s been bad ever since.

I really can’t say that the hole in my eardrum helped my dizziness at all. (The two days of improvement was probably just a coincidence. It’s hard to say…) However, there is no doubt that I am now terribly worse since re-injuring my neck falling last week. I am so sad, and I feel I can’t catch a break. What I’ve always described to people as “rocking” and “bobbing” is really disequilibrium. When I walk, I feel like I’m drunk and feel as if I’m being jerked around. As many of you know, it’s horrible.

It should take about a month, if all goes well, for the eardrum to heal on its own. I’m glad I tried it, because I can now rule this out as a solution. I am quite concerned about the increase in my symptoms since my fall. At this point, I just want to get back to my baseline state of horrible. :slight_smile:

I have an appointment coming up for another injection in my spine (both sides of C1 and left side of C2 and a left 3rd occipital nerve block). I am so miserable right now.

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Thank you, LOVE.

Not sure if my posts help anyone or not, but wanted to check-in again and write an update. First, the hole in my eardrum closed on its own after 2 1/2 to 3 weeks. The muffled and clogged sensation went away, thank God. In hindsight, I don’t think the myringotomy helped, although falling and re-injuring my neck put another variable in the mix. One thing that surprised me was that I continued to have intermittent, stabbing ear pain even though the pressure in the middle ear should have been equalized to that in the external ear canal. I had always assumed the stabbing pain was related to my retracted eardrums. Obviously, I was wrong, and need to re-think that angle.

Now, the good news. I had more injections 8 days ago, and I felt dramatically better right away. In fact, each day has been better and better dizzy-wise. The doctor added in a new procedure to the usual injections into both sides of C1, the facet joint in the left side of C2/3 and a block of the 3rd occipital nerve. For months, the doctor has been telling me she wanted to try radio frequencing pulsing of that 3rd occipital nerve. She said it’s a gentle, intermittent “warming” of the nerve and not the destructive radio frequencing nerve ablation that some doctors do. In her experience, it improves the effectiveness of the occipital nerve blocks and helps them last longer. I had always been afraid of making everything worse, so I had been reluctant to try this procedure. With the exception of a couple of “zingers” in the occipital nerve pathway the day of the procedure, I haven’t had any ill effects.

I don’t know how long I will continue to feel well, but I am loving every minute of it! I spent all day today rarely thinking of dizziness. I’ve been relaxed, happy and much more like my normal self BD (before dizziness). As I said, I have had less and less dizziness each day for the past week. I haven’t had any clogged ear sensation since the eardrum healed, but the tinnitus has been terrible.

In fact, today is the first day in a week that my ears haven’t been ringing. (I’m experimenting again… I took a muscle relaxer last night that helped me sleep soundly, and I woke up with quiet ears. I’ve tried this several other times in the past with the same outcome. It seems when I take a sleep-inducing medication, I wake-up the next morning without tinnitus. My speculation is that when I am in a deep sleep, my bruxism and teeth clenching is reduced, thereby decreasing irritation of some muscle connected with the eustachian tube or middle or inner ear that may somehow increase tinnitus. (I had a head-pain dental specialist tell me that micro-arrousals during sleep - from sleep apnea, etc.- are linked to teeth clenching/grinding.) I know I ordinarily wake-up multiple times per night. I wonder how many micro-arrousals I experience of which I am not aware? I’m wondering if a CPAP machine would help? Just speculation here…

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Another update: It’s been five weeks since my last set of injections. I’m still feeling great… maybe 75-80% back to normal. From where I was- I’ll take it!

The last few days, I’ve had more of that strange wiggle-worm, burning, cold sensation in the pathway of my left occipital nerve. I’m hoping it’s not a sign that my dizziness will also worsen in the near future.

I rarely think of my dizziness now, which is such a change from that all-consuming sensation of movement. When I get out of the car, I still feel shaken-up for a time, but it’s much milder than before. My tinnitus is still there except it’s generally gone when I wake up from a good night’s sleep. It’s time for me to look into a CPAP machine. I wake up snoring multiple times a night despite the fact my weight is normal. ( really wonder if there is some connection (for me, at least) between sleep apnea and tinnitus.

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Hi KennedyLane,

First of all, thank you for all the inspiring posts giving hope and knowledge to people in a similar condition.

I know this is an old thread, but I am curious to how you are progressing?

I have had a similar set of symptoms for almost 10 years (dizziness, tinnitus, fullness, fatigue, occipital sensations, visual disturbances), but no diagnosis other than cervicogenic dizziness. Most likely related to whiplash or tightness in my levator scapulae from carrying heavy shoulder bags years ago. I don’t have great posture either.
After reading what you have posted, amongst other research, I feel that I should see a Neurologist, for possible occipital neuralgia.

So, how are things going? Are you still getting the injections?
Thanks :smile:
kbo5000

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Hi KLane,
Thank you for all your updates. Very useful information.
I hit the right side of my head 1.5+ years ago,while getting into my car ( frame of door), diagnosed with concussion and later after seeing an ENT, I was diagnosed with bilateral inner ear dysfunction (nystagmus). I also complained of dizziness, fogginess and wobbly. I had blurred vision the day after I hit the head and went to ER. The fatigue has not stopped and I still must rest 2-3 hours/day. I have not been able to work on computer for a long time, as I experience tightness with pain in the temple areas and eye pain. I did physical therapy and the resistance workouts caused pain in the occipital area, top of head, fogginess and imbalance. The ENT, I believe, told me the occipital pressure and pain were due to the nystagmus. I have had Epley maneuvers but the ear ENGs are still positive, so I was referred for visual occupational therapy. I had eye convergence problems, and now I am improving. I am able to drive up to 50 miles per hour without getting dizzy-Able to move the eye without getting dizzy also. After this rehab I will have vestibular rehab.
Because of so much fatigue, I went to the gym and did some resistance work with inner/ outer thighs, leg presses and did the pull down bar. All minimal weights. I felt foggy a few hours later, but the following day when I got up, I had a lot of pressure and pain in the occipital area, the area that got hit felt painful ( top side of head) and radiated to temples and forehead. My neck is still very stiff with knots.
I took supplement Migrelief and magnesium and felt better but still had difficult time sleep on the pillow.
I am wondering if my occipital symptoms are coming from the neck, occipital nerve inflammation and independent from the inner ear dysfunction. I plan on calling the ENT next week to discuss.
Any ideas as to why I am not able to work out using resistance? The therapist thought it was great that I was able to work out.
Helen

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Any updates and thanks for the post. Is this all behind you now? I am dealing with same issues and the posts helped me greatly understand

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Helen,

I would really suspect inner ear trouble in your case as hitting the side of your head suggests trauma but bilateral?? That would really be unlucky. I would get a second opinion.

It’s surprisingly easy to hurt your inner ear - my trouble started when I pointed a shower into my ear which yes, with hindsight, was VERY STUPID, but my thought process was affected by the countless times I’d had had my ear syringed with no issues, thinking it could clear out the wax. I was actually very careful otherwise - I turned down the heat and the pressure to what I thought was ‘gentle’. I started to feel dizzy 15 minutes later, and had severe dizziness and imbalance for 5 weeks, then it all seemed to go away. 5 months later I was hit with the chronic symptoms I have to this day, 2 years later, although it has steadily improved with many relapses over those 2 years.

I’ve been variously diagnosed, with my main Neuro calling it MAV, whilst I’ve had a more believable second opinion (or was it fourth?!) that concluded a fistula and Secondary Hydrops. I have a feeling the latter is the right diagnosis, but given the symptoms are exactly the same as many describe on here I wonder if all of us are walking around with a fistula, however small!! The most significant symptom that points to this for me is the sensation of fluid I get in the ear every morning which seems to drain away within a few seconds as I get up out of bed. As my condition has improved, the volume of this and duration of draining has decreased. I wonder if you get any similar sensation? I’m convinced that this is leakage overnight in my bad ear. It has almost stopped now and only very slight. I now have the best balance I’ve had since this all started … very odd! I’m still on 20mg Ami nocte. I get fluctuating hissy tinnitus too and this I believe can be worsened by diet, but I’ve not completely nailed down what it is that exacerbates it - my bet is on carbs funnily enough, not salt, as just spend 3 weeks in china eating very salty food and I’ve been getting better the whole time rather than worse, go figure!!

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Hi Kennedy,
Thank you so much for your post. I feel as though you are speaking of my condition.
Where did you find your great doctors? All the neurologists I saw told me There is nothing wrong with me. Yet, as you indicate, I had an MRI showing neural cervical stenosis at c4, c5, c6.
I hit my head 2.5+ years ago. Was diagnosed with bilateral vestibular dysfunction peripheral and now central. Epley maneuvers did not help. So I was told it would take me years to heal.
I also see a rehab optometrist who prescribed prism glasses, contact lenses etc.
In April 2017 I lowered my head to sleep on one pillow, as I was sleeping on 3 pillows because of acid reflux. In the middle of the night I woke up feeling nauseous, dizzy, and great pressure on my temples. I have been sleeping in an almost sitting position since. In May I went for acupuncture which helped, but it gave me severe anxiety. Then I went for Craniosacral therapy which helped at first but I still could not lower my head when sleeping.
Now I went to see Upper Cervical chiropractors who took x-rays and diagnosed me with c1-c2 misalignment. I have other misaligned vertebraes in the cervical, thoracic, and lumbar, making my hips uneven. They use NUCCA method which is supposed to be non-invasive and gentle. I did not start treatments because they are located 1 hour from my home and I cannot drive on highway.
So I visited an osteopathic Dr who told me I had Dural Mata restriction on the right side, in my cranium and told me to not see chiropractor because she could help me. So far I received 2 manipulations and I have been feeling a lot of pressure/ pain in my head. I interestingly I feel more clear headed, less foggy and increased memory. However, I still cannot drop my head when I sleep. I am thinking of stopping osteopath for 1-2 months and go see the chiropractor as many of my more severe symptoms may come from
Cervical spine. Any ideas? All doctors I visited with exception of ear dr and optometrist have mocked me as if I am crazy.

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Well looks like I have this also - CT scan clear on brain and MRI same. However dizzy as and get the headaches and burning on scalp. Not been able to work having panic attacks. All happened when I was driving I felt something go in back of head. A osteopath is helping me with cranial technique believes she can cure me. Had 4 sessions so far, and yes I feel better then I did but it’s a slow process. Seeing a neulogist in 9 days

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