Mystery Illness: Mastoiditis or something else?

Hi @cromeo112, welcome to Connect. It sure seems like your mother has been to see the right specialists and had relevant testing. It must be frustrating to not yet have found a cause for your mother's uncomfortable and distressing symptoms. WebMD's article on Mastoiditis lists many of the symptoms that you have listed. https://www.webmd.com/cold-and-flu/ear-infection/mastoiditis-symptoms-causes-treatments#1

Have you discussed the possibility of mastoiditis with her physicians? Has she had an ear infection?

Good morning and thank you for your reply. She has not had an ear infection recently, the MRI indicated that there may be a correlation with mastoid inflammation. Can you tell me what that may mean?

Thank you!

Good morning. My mother had an appointment with her neurologist yesterday and he indicated that there was nothing neurologically wrong. Is there a practitioner who we would look to see that would have the ability to look at all of the testing and symptoms and provide some guidance? We live in the Maryland area so we have access to Johns Hopkins and if needed could go to the Philadelphia area as well. Thank you very much!

Hi, @cromeo112 - thanks for the update on your mother and her neurologist appointment for the pressure in her head when sitting or standing, ringing in her ears, lightheadedness and previous spikes in blood pressure. I can imagine it's been hard not getting answers thus far.

I'd like to bring @lioness @johnbishop @judysmayo @ravenamore @aarniek @phillipc421 @redhead63 @ggacker into this discussion for their input as you try and figure out what might be going on with your mom.

Sounds as though an academic medical center might be appropriate, if you've not yet visited one with her. @jeannels @bandolsmom and @amberpep may have some thoughts for you on a practitioner who might provide further guidance with your Maryland area location.

Did you get any further information or explanation, cromeo112, on the inflammation of the mastoid bone?

Hi. Has she seen someone who has assessed her musculoskeletal system in her neck. There are certain muscles, that when tighten/spasm will cause pain that radiates into the ear scalp head area. One muscle in particular that can cause pain behind the ear, and attaches in the mastoid area. These headaches that start from the upper cervical area can cause all kinds of odd dizziness/pressure sensations, and often times you can not tell it is coming from the neck. ENTs are supposed to be educated on the Jaw area and how all of these muscles can mimic ear/sinus pain. But unfortunately most are not.
Just a thought.

Hi, @nrd1 - sounded like you may be familiar from your personal experience. Wondering if you've also had the pain that radiates into the ear/scalp/head area you mentioned?

@camapp1, I've taken all these meds, history of migraines.... Just a thought, and I'm asking from experience.... if you use any type of gas heat, is there the possibility of CO poisoning? I learned the hard way that the amount of CO concentration it takes for most detectors to go off is far beyond what is safe. Low levels of CO on an everyday sort of basis can do terrible things to a person. Extreme headaches with not really any relief is one of them.
Also, with the fact of finding fluid in/around the mastoid, I'm surprised no antibiotics were prescribed. And unless you have a history of migraines, Imitrex isn't going to help and propranolol can cause fluid retention.....
I also have a condition called Eagle Syndrome. It's missed by dr's more than It's found because of the rarity of the condition. Make sure your CT doesn't show any styloid elongation or calcification in any ligaments.
As far as your current situation, a chiropractor or massage therapist may be able to alleviate the headaches to a more tolerable level while you await your next appt.
I literally feel your pain, it's been my life for yrs:(

About 5 weeks ago began having night time head aches in the 8-9 pain range. After about a week these evolved to 24/7 in the same pain range. I live in a rural part of northern California where My GP has been a very caring NP but access to an ENT is a 3-4 month wait. My NP has prescribed MRI and CT which indicate small amount of fluid in mastoid. NP has prescribed Propranolol prior to bed and Trazadone (for sleep aid), Imitrex (allowed use is very limited) and referred me to local ENT who is not available (even on urgent basis) for a few months. Managing some of the pain through rotation of Advil, Tylenol & Excedrin M with mixed, sporadic results. Looking for others who may have suggestions relating to management of pain while awaiting care/treatment and/or who have experience with conditions/treatment similar to mine.

Welcome to Connect @camapp1. I moved your message to this discussion where we have several members talking about similar symptoms and findings (related to mastoid) and I'd like to connect you with them. Simply click VIEW & REPLY in your email notification to find your post.

Here’s an interesting article about "Fluid signal in the mastoid is a common incidental finding on MRI of the brain” which might interest you: https://www.ncbi.nlm.nih.gov/pubmed/30421176

@camapp1, have you noticed if the pain has radiated to other areas?

Ms. Pereira,
Wow, your help is very much appreciated. Thanks for linking me to discussion.

Yes, pain moves all over my head - mainly on top half of my right side (just above back of ear) but will often be along base of skull, up back of head or across front above eyes - all experienced either individually or in unison. The area over the top, rear, right quadrant of my scalp often burns/tingles/sensitive to touch when pain elsewhere is in the 5 and above range. About a week ago I woke with a tooth ache at #7 that was pretty sensitive to outward pressure and lasted about 5 days. Had dentist ck with no sign of dental issue - I have very good teeth/gums & 6 mo cks. so I assume this might be related in some way too. Sensitivity to light is not a big deal - just when facing very bright sunlight do I notice things ramping up a bit. All pain experienced comes in waves but those tend to be oriented in one general area for various periods of time then will suddenly show in another one of the areas mentioned above. There is no "rhythm" or predictable period of relief provided by a particular dosage of meds. Sometimes a dose will produce results within 15 mins while next time the same med dosage will not be effective for 2 hrs. This makes it difficult to stay ahead of pain with meds.
I meant to respond to Jenlink's question regarding effectiveness of the Imitrex and propranolol if I have no history of migraines. I have no history of migraines but the Imitrex definitely gives relief anywhere from 3-6 hrs. It can take affect anywhere from 10 - 60 mins. The propranolol seems to help but I take that just before bed time and always take either an Imitrex and Excedrin Migraine (1-2), Advil (1-2) and/or Tylenol (1-2) - dosages depending on where I'm at for 24 consumption limits. Based on her question I wonder if this is an indication of what is going on.
I use following dosage limits: Tylenol 500 mg - Max of 2/8hrs or 8/24hrs (3000 mg/day), Advil 200 mg - Max of 6/8 hrs or 12/24 hrs (2400 mg/day), Excedrin Migraine 250 mg Acetam - Max of 2/24 hrs . This is based on limits I found on popular medical support website. Using these dosages I will often run out of meds to use so tend to stretch frequency and end up falling behind the pain curve.

Thank you. The support here is fantastic.