My symptoms baffle modern medical science, or at least 6 local doctors.
March 6, 2017 1:48 AM   Subscribe

I'd be glad to hear from anyone, doctor or not, who can help figure this out. The symptom that bugs me most is the constant pressure in both ears that I’ve been feeling since October. Accompanying symptoms that started about the same time: often my earlobes burn, my scalp feels tight and itches, my exterior ears itch, and I get headaches. The ear pressure is constant; the others come and go in no particular combination. Sometimes my face and ears feel very hot to me but not to someone else’s touch. I’ve felt like I had a fever several times but the thermometer showed 97.5F.

Some background. All spring and summer I had hives. In June I thought I had jet lag but it went on till the beginning of August so in retrospect I figured I'd caught something from the cougher behind us on the plane.

Then came the rashes. In September I had a four-day rash, bright red, very hot, itchy, swollen, and painful. It started centrally and advanced till it had covered just about everything below the neck. Each area had its own painful 24 hours and then the rash would fade in that area. For some reason it was less painful below the knees. I knocked it back with Zyrtec. The four-day rash repeated in October but was slightly less horrible, maybe because I started Zyrtec as soon as the rash woke me up in the middle of the night.

I thought chocolate was the link between the two rashes and gave it up, but allergy tests showed no chocolate allergy. Still, I haven’t had hives since giving up chocolate except one hive from one chocolate chip.

My current problem has gone on since October and started a few days after the second rash attack ended. First my earlobes started to burn. Before this, the rashes and the hives had all been only below the neck. Over a few days in October I could feel the burning moving up to cover my exterior ears, and in the next few days I felt it moving to the inside of both ears. To be clear, once this thing went to the inner ear it didn't itch or burn there; it just causes a constant feeling of pressure. The burning and itching on the outer ears and scalp, and the headaches, come and go.

I’ve seen my PCP, a neurologist, a dermatologist, an ENT, an allergist, and a physical therapist.

A head MRI showed nothing wrong. The ENT said there is no physical blockage in my ears that could cause the feeling of pressure. Blood tests showed current Lyme but no other problems. I’m on my second month of doxycycline for Lyme. TSH tests were low end of normal. Allergy tests showed some airborne allergies but no food allergies.

We’ve tried Zyrtec, Claritin, Benadryl, puncturing the eardrums, extra-strength Tylenol and ibuprofen for headaches, doxycycline for Lyme, spinal manipulation, betamethasone cream, fluticasone, mineral oil in the ears. Nothing has helped. P/T for TMJ helped my jaw but didn’t stop the ear pressure, burning/itching, and headaches.

We haven’t introduced any new products into our household. I can’t relate the timing of the burning and itching to any foods or exposures. My only medication is an asthma inhaler, Symbicort, which I have used for several years. I am generally pretty healthy!

My PCP thinks I might want to see a Lyme expert. I don’t have the muscle aches usually associated with Lyme.

Anyone still with me? Any words of wisdom about my symptoms?

Just in case I can't be diagnosed by Ask, I’m thinking of the Mayo Clinic. It would be a big deal, and expensive, for us to do this, but I’m beginning to think that local specialists can only see their own area of expertise, and it seems to me that diagnosing this will take someone with an overarching view of more than one specialty, or close collaboration between specialists, which isn’t happening here.

If you’ve had any of these symptoms, or have a guess at a solution, or if you know something about the Mayo Clinic, I’d appreciate your comments.
posted by anonymous to Health & Fitness (9 answers total) 2 users marked this as a favorite
I would try the Lyme specialist and go from there.
posted by yes I said yes I will Yes at 3:10 AM on March 6, 2017 [9 favorites]

IANAD, IANYD, and these are just guesses, but it sounds possibly autoimmune to me. Did you get checked for eczema? Apparently it can go from outside the ear to inside.
I know you said you saw a dermatologist, can I assume they also did a patch test to see if you have any reactions to, for instance, nickle or products that contain ingredients that break down into residual formalin? I know that I had bad out-of-nowhere rashes a number of years ago that were made worse (and possibly partially triggered) by various skin irritants plus a surge of stress.. That doesn't help your ears though.
Third thing and this is kinda out there, but have you had your MMR vaccine? I heard "rash moving around" and thought rubella, but I'm an oldster so...Probably obvious but if you've visited any places that have diseases that may be rare in your area, be sure to tell the drs about the travel.

I hope you feel better. You may want to see an endocrinologist, they could check into hormone levels and delve into the thyroid thing more if that seems like a possible direction. Best to you!
posted by Rufous-headed Towhee heehee at 3:30 AM on March 6, 2017

See the Lyme specialist. Make a written list of your symptoms, maybe prioritized by severity, and bring it with you, so you make sure to mention everything. Also it isn't clear here how your Lyme was found- do you know the date of infection? Be sure to tell the doctor what you know.

Careful with googling Lyme symptoms by the way- because some of the symptoms are vague and don't appear in all cases, it's easy for random internet denizens to self-diagnose and then report their unrelated symptoms as Lyme-caused. Much better to see the Lyme specialist, since you can.

For the possible food allergy, there are tests besides the blood test, such as a double blind food challenge; for this you'd want an allergist. Note that allergies can be exacerbated by other conditions; I have no idea if Lyme is one such condition, but the specialist will know.

Overall-- why not see the Lyme specialist but also start looking into feasibility of Mayo or Cleveland? It might take some time to figure out how to get an appointment there, what your insurance will cover, how to financially manage what won't be covered, etc.

Even if you don't end up going, it might make you feel a little better to actively explore the possibility.
posted by nat at 5:11 AM on March 6, 2017

I had debilitating hives for months and months. So bad that if I didn't take an antihistamine like clockwork, I would start to show signs of anaphylaxis. Like you, I went from doctor to doctor. Finally, I walked into an allergy specialist and he said, "I bet you have an underlying sinus infection."

This made no sense to me as I had no symptoms of a sinus infection whatsoever. Regardless, we went into his office, he did an ultrasound of my sinuses and sure enough. I had a sinus infection. Antibiotics for 10 days and I haven't had a hive since. That's been at least 15 years ago now.

Best of luck. I sincerely hope you are able to figure this out, and soon!
posted by Sunnyshe at 5:15 AM on March 6, 2017 [5 favorites]

Given your symptoms my first thought was Shingles.
posted by canda at 6:06 AM on March 6, 2017 [1 favorite]

I am a bit of a sensitive snowflake when it comes to environmental allergies and I have definitely had ear pain/pressure and sinus headaches tied to allergies. This is often a symptom for me before or without the itchy eye/nose/throat symptoms most people associate with an allergic reaction.

Scalp and ear problems make me suspect a sensitivity to hair/skin care? From what I understand, you can develop an allergy to anything at anytime, so I wouldn't necessarily rule out things that you have used for a long time.

If I was in your shoes I would probably keep at the allergist or look for a different one if you aren't satisfied with their progress. These things are not the easiest to nail down, in my experience, since you could be having multiple reactions to multiple things. Good luck, sounds like you are stuck on a fairly frustrating and miserable path right now.
posted by gennessee at 10:19 AM on March 6, 2017

Meningitis is associated with a rash, and can be viral, bacterial, or fungal, and is usually spread by airborne droplets from coughing or sneezing.

It ordinarily progresses pretty rapidly, but it can be chronic, and the chronic form is often associated with a weakened immune system, such as you may be experiencing because of your asthma medication.
posted by jamjam at 10:27 AM on March 6, 2017

If the chocolate was milk chocolate, I'd eliminate all sources of dairy for a few weeks.
posted by furtive_jackanapes at 12:48 PM on March 6, 2017

One possibility is an atypical migraine. Not all migraines cause pain but many of them excite the trigeminal nerve which can result in sensations in the head or body which can feel like tingling or pressure or heat. Some people find chocolate triggers a migraine. Others find a symptom of a migraine coming on is a craving for chocolate, or for salty unhealthy foods. Your first paragraph reads to me like a list of pretty standard migraine secondary symptoms or migraine aura.
posted by Jane the Brown at 1:38 PM on March 6, 2017

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