Plaguing question about flair ups

General
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Here’s a question for the experienced: in my case, I’ve dealt with constant pain for 18+ months. Until recently when I finally got a reprieve from symptoms and I felt really good. That lasted all of 3 weeks and now the inflamed feeling, ear fullness and burning sensation are trickling back.

Can anyone suggest what could possibly cause the inflammation/flare-ups to occur or even come and go?

I’ve read here that in particular ES can cause chronic inflammation- what could trigger the response for this?

Kind thanks for any shared opinions :blush:

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It’s definitely something others have noticed too! Who knows why- sometimes you can work it out, you might have had your head in a funny position which helped (or made it worse) for some reason, change in temperature, less stress/ more stress…I’ve had really good results from surgery, but notice pain around the styloid area again just before I get a cold, virus etc, maybe that sets some inflammation off again?! Just enjoy the good times!

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So weird! I just can’t think of anything different that I’ve done or that’s occurred. And for folks like me who want to know all the “what, where, when, why” answers to an issue that’s so unknown, just adds to the curiosity/frustration. Thank you, Jules :blush:

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Since you live in a northern state, it could be that the colder weather is creating a problem. As Jules said, some of our members have noticed symptoms flare when the weather gets especially hot, cold, or damp. She also mentioned, & I noticed this w/ myself, that there sometimes there seems to be no rhyme or reason for the coming & going of symptoms. In addition to Jules’ suggestions, recall the last days prior to your symptoms coming back & see if you remember doing any new activity or pushing yourself harder than normal because you were feeling better. For example, when my symptoms would subside, I’d push myself harder when I exercised, which, of course, always caused my symptoms to flare-up again. It was very annoying but at least there was a recognizable pattern there.

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Isaiah,
It’s like finding a needle in the haystack! My best guess is that when I stopped holding and applying pressure to that area, things settled down I was also sleeping on that side a lot. It could be that I recently inadvertently slept on that side and it caused some compression hence the flare. I’ve been careful not to sleep on that side the last night or two and things are more tolerable (and I became more consistent with the Gabapentin—which I’m not convinced helps).

How ridiculous is that?

Thank you for chiming in. I value the experience from others. Best to you and @Jules this Thanksgiving :pray:t3::turkey::orange_heart:

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Totally agree about the needle in the haystack. I’m glad you’ve found something that seems to be helping the symptoms subside. You may find things that work for awhile then other things that help when the first things don’t help anymore. Hopefully adjusting your sleeping position is all that is necessary for the long term. Have you tried putting pillows behind you to keep you from accidentally turning over on to the sensitive side? That might help so you don’t need to keep it in mind so much while trying to sleep.

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I myself have wondered the same. I sometimes feel like my body is in a state of constant inflammation. You dont realize how much pain you have dealt with until its suddenly gone and it comes back with a vengence.

Its been a year since Ive had my 2nd styloid out and a tooth extraction in June triggered all kinds of jaw and neck pain as well as vertigo with some viral blisters on my face. Im told virus’s lie dormant in our nerves in neck and face and stress or an assault of a medical nature can trigger it. Took weeks to calm down. Now suddenly I’m getting the ear fullness, sore throat and pain along with vertigo. My sinus’s feel full of pressure. I had to go to 4 doctors before I could get an RX for steroids because I know its inflammation.

I was asked if I had been sick or just had a cold which I had not. The weather has turned cold and wet (huge barometric changes) and have turned the heat on again. I have been under alot of stress. I took ask the same questions…what did I do to trigger this?

I know I can take better care of myself…like eating better, exercising, get my weight down. Many years ago, i went to a clinic that does a body detoxification program. It was really body cleanse and raw foods diet. I stayed on a very clean diet for 6 months and felt very good. Alot of my lab values all normalized. Im getting desperate enough to make another trip to a week there…maybe two.

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Hello all. Its been a while since I’ve posted. I haven’t been to the site in quite awhile but I see the emails in my inbox all the time and never open them. Today I decided to and the first blog that come up was this one about plaguing flare ups. That’s me. @Snapple2020 - I am sorry to hear that you are suffering. I can certainly relate.

December will be 2 years since my second surgery. I am in the middle of a flare up with all the same symptoms I had pre-surgery for #2. The first surgery on the left side relieved most the symptoms (except my tinnitus is back louder then ever,) but when I had severe symptoms flare up on the right side after my first surgery, it seemed only logical I have the second surgery. I will say it never helped.

My symptoms - almost all on the right side:
tightness in jawline
pain under jaw
numbness in jaw
ear pain
tinnitus (left side so loud it wakes me up. Noise machine is plugged back in and it does help)
eye pain
constant headaches, sometimes with severe pain in eye, face, teeth, neck, (I had one yesterday)
burning in shoulder
brain fog
joint pain
food sensitivities (gluten and dairy intolerances)
palpitations
crunching, grinding sounds in neck and up into head.
my sinuses get clogged in an instant then moments later I can breathe again
nose clogs every time I bend over
dizziness when standing (mostly at the end of the day - I think caused by inner ear
weakness in both arms
anxiety - of course
I also have thyroid nodules right side (followed with yearly sonograms). Painful only during flare ups.

Since I have had flare ups for years now, my doctor is now saying its possible I have an autoimmune disease. I have heard it said many times, if surgery for ES doesn’t help, then it wasn’t ES. I would say its like fibromyalgia but its mostly localized to right side of head, neck and shoulder, though joint pain in both knees. I’ve been doing PT with some success on the headaches.

Scheduled doc appointments -
Endocrine thyroid specialist (Not sure if the flare up pain is a flare up of the thyroid and nodule or pain from the neck flare up.) Hoshimoto’s ? All my past thyroid tests show my thyroid working fine. I just had test Wednesday and waiting for the results. Hoshimoto’s is a possibility because of my food sensitivities. I am gluten intolerant and usually avoid, but sometimes fall off the wagon. Just restarted my clean, not much on the list of foods to eat diet - no sugar, gluten, dairy, legumes, most fruits . . .

Rheumatologist to check for bone, muscle and related autoimmune diseases.

I recently saw my ENT - unless tinnitus is cause by a blockage or wax, there is no cure :frowning: I am scheduled for a hearing test, though I suspect my hearing is ok for my age (61)

As for possible TMJ, I used to clench my teeth and wake up with horrible pain in my cheeks and jaw. I always hyperaware of never letting my teeth touch except to chew and wear a night guard. I haven’t woken with the clenching pain in a few years now. Fibromyalgia can supposedly mimic TMJ.

Thanks everyone.

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Welcome back, BrooklynGirl!

I’ve been thinking about you recently & was planning to send a PM to check in. You got here first.

I’m really sorry to know you’re still struggling. Since your symptoms are so severe & really do point to a possible ES based problem, it would be worth it to ask your ENT for a referral for a CT scan to check in on the right styloid. It’s possible Dr. D didn’t shorten it enough &/or that it has regrown some after that surgery. It even sounds like you might have some vascular compression based on the headaches & eye pain. That said, vascular compression can also result from scar tissue or muscle tightness which could explain why PT is helping relieve headaches. If the CT scan shows all is well, & the styloid is still short then you’ll know for sure something else is causing your current symptoms.

I’m glad you’re being thorough in investigating all the possibilities. I also have nodules in my thyroid & get them checked annually. A couple of mine are calcified so they get biopsied periodically. Prior to my ES diagnosis, my neck would get sore when a new nodule was forming, but since my ES surgeries, I haven’t noticed that anymore.

I hope you’re able to get to the bottom of what’s causing your symptoms. I am truly sorry that your ES surgeries didn’t do more good for you, but I am glad you came back to update us. Please don’t hesitate to post even when things aren’t positive. We want to support you no matter what. Also, our members need to have the whole picture of what can happen after ES surgery & a bias toward “it always helps” or “it rarely helps”.

Please keep us in the loop as you have your appointments. I will be praying for some answers for you.

:heart: :hugs:

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Thank you for your response Isaiah!

I had a CT scan last year and it showed that the styloid was completely removed. This was following a flare up. I had the same flare ups and symptoms before my surgery so maybe its not scar tissue.

In the meantime, its still one foot in front of the other.

Stay safe and healthy.

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@BrooklynGirl

Oh BG, I’m so terribly sorry to read that things didn’t help with your ES surgeries. I can’t even begin to fathom the frustration you must feel.

I don’t expect that you’ll be back to reply any time soon but in the even you are, I’d be interested in the highlights of your story, history and how you were diagnosed. I’ve tried to look in historical posts but I’m struggling to find such.

I’d be lying if I said that this didn’t put a new layer of fear in me while I await surgery scheduling. I have these daily doubts and often wonder if I’ve turned over every possible stone. I wish there were some sort of guide or checklist to help know if surgery is without a reasonable doubt, the right next step.

Thank you so very much for taking time to share! Blessings to you.

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Snapple, am I understanding this right that despite having your SP’s removed you’re still having flare ups with the same symptoms as pre-surgery? Or are there other underlying conditions that contribute?

So hard to read these threads and feel assured I’m taking all the right steps. :weary:

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@Tjmhawk01
I understand your concern. I am sorry to have added fears to your journey.

I think the surgery for me was a necessary step. With the surgery now behind me and ruling out ES as the main culprit for all of the issues on the right side, I can now move forward to (hopefully) find out the root cause. My next step is a rheumatologist.

The pain in my neck on both sides started over 4 years ago. I started with my GP with tests, then moved on to an infectious disease doctor, then on to the ENT specialist. He was not sure it was ES so wanted to rule out all other possibilities with more scans and tests, and when all was said and done, he came to conclusion that it was ES.

I went to two different surgeons and they each had a different approach. I went to Philadelphia for the left side, it was the smaller of the two incisions, but he left a stub. The right side was a longer incision, but all of the styloid was removed. The symptoms on the left side went away, including the tinnitus, but that came roaring back recently. The symptoms on my right side never really went away. The location of most of my pain is not at the incision and not at the removed styloid, so pretty sure the pain is not lingering from scar tissue. I also had a scan last year to make certain the styloid wasn’t growing back.

The right-side flares up - it did before the surgery and it still does from time to time. I am in the middle of a major flare up - its soft tissue pain. I mostly manage and cope on a daily basis but this flare up is one of the worst. What’s causing it? I do know that life is short and I wish that I could take back all of the years I worried about stuff. Stress and worry are a major cause of a lot of medical issues.

I hope you find peace in your choices and I wish you all the best in your healing journey.
BG

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Thank you for your helpful update, BG. Really appreciate your surgical summary and am just really sad that ES surgery didn’t cure your pain.

You’re absolutely right that stress, worry, anxiety all contribute to symptoms flares & once we’re in a flare, we worry, stress & are anxious. It’s a vicious circle for sure.

I hope & am praying your current pain flare subsides very soon & you’re able to get to the bottom of what the cause(s) is/are.

:blush: :hugs:

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So sorry that surgery hasn’t been the answer for you, you’ve had a long journey with lots going on…I hope that you’re able to get the answers with the new specialists, & that the diet helps- that sounds miserable! Does sound as if maybe you have Trigeminal Neuralgia with the pain in your eye, face teeth etc., & flare ups could be auto immune…but as Isaiah says some of the symptoms sound like vascular ES? We have had one member who had what they though was vascular ES from styloid compression was actually compression between the SCM & C1 process, it might be something to explore with a CT venogram? Or Complex regional pain syndrome maybe? It’s so strange that the first surgery helped the left side but not the right :thinking:
Will pray that you get some treatment to help, thinking of you & sending you hugs :pray: :hugs:

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Hi tjm,
sorry I didnt respond sooner. Im not getting notifications.
Most of the symptoms have resolved overall but I knew going in that I had TMJ and osteoarthritis in my jaw as well and wasnt sure what would get resolved after ES surgery. I also have neck instability and still struggle with neck and shoulder tightness due to hypermobility. Right before I had my 2nd ES surgery, I had CBCT of my jaw and found significant bone loss in one side of my jaw joint and found that my jaw out of alignment and jamming my trigeminal nerve. I had already been getting injections in jaw as its tight as a drum. Those help and an appliance I wear at night helps too. When you have TMJ and/or other cervical instability issues along with Eagles, it can be complex to address it all. I agree with Brooklyn, when stress higher, things worsen. I have a tendency to have tight muscles. If I get regular massage, especially when stressed, it helps with the chronic pain. Ive had chronic pain from nerve compression caused by scar tissue formation - had several surgeries…this is not easy to diagnose and need special imaging to pick up.

I was doing pretty good for awhile but a tooth extraction send me thru the roof ie: jaw pain and triggered vertigo. Took weeks to recover. the out of the blue a few weeks ago, vertigo hit again and ears bothering me ie: fullness, pressure and some hearing loss. I dont think this is related to the original Eagles at all but recently someone shared Dr. Axon is studing "linked: conditions to Eagles, one being in the ear.

One of my daughters (One had POTS), the other one has Complex Regional Pain Syndrome. Both have various degrees of EDS She saw a rheumatologist and they found little in blood results. She did however test positive for HLA-B27…a simple blood test that indicates you have a higher chance of developing autoimmune conditions. MY oldest son is having some autoimmune issues but doesnt have the tenacity or patience to seek out more care. He went to rheumatologist with little results. His next steps should be to see an infectious disease doctor. The whole world of autoimmune conditions is really fraught and alot of guess work.

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Thank you, hon for taking such time to explain. I’m sorry you have to juggle so much. You’re an incredibly strong person, no doubt!

Sometimes I read things here and the hole of discovery just gets deeper and deeper and I end up self diagnosing myself with things that probably never exist, seeking out symptom checkers and credible sources - still, needing to remember that all these symptoms tend to cross over and at this point, I just need to keep my path simple and cross off one thing at a time. Im a worrier and over-thinker that way…not one of my better traits :roll_eyes::stuck_out_tongue_winking_eye:

Having already been misdiagnosed and having a surgery for it that did nothing, you could also say I’m “once bitten, twice shy”. Still trying to assure myself that this (ES) is the most likely correct path…at least I hope!

You have a spectacular day! And thank you again for always so kindly helping me sort through and try to make better sense of things.

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Brooklyn,

I too felt that the surgery was the right choice for me as well given the results of the CT scans that supported doing surgery. I found you can only focus on one thing at a time, address it and move on to the next issue. I feel I did the right thing having the ES surgery.

I have similar sinus clogging as you and the constant neck crunching. I did just have a hearing test and there has been “minor” hearing loss on one side. I do know by the time I got the hearing test, it was improved so it wasnt minor initially and the loss of hearing was sudden. This was after recent vertigo, tinnitius and massive pressure in ears. The ENT is going to run more tests but indicated “sometimes these episodes pass.” There is some mention of munieres which isn’t curable but can be improved with a low salt diet and duieretics. Mine is slowly passing except a few minor issues. I’m not feeling real warm and fuzzy about this being fixed or even diagnosed. The ENT is highly competent so if he cant figure it out, I doubt anyone else can.He has given me RX for vestibular PT and many people I know have said it helps alot. FYI: They cleaned out the wax in one of my ears as it was covering the ear drum. It didnt change my hearing loss. This seems to be a go to reason to consider by ENT’s.

While all this flair was occurring, my neurologist gave me my regular botox injections and focused more around back of ear. Its hard to tell if the injections helped directly but I am better. I do know prior to my 1st ES surgery I was having major left sided head/neck pain and it ran from mid-neck to temporalis muscles on the side of my head. It was excrutiating. I do believe all the tightness of the muscles play a part in this chronic one sided pain. My posture isnt particularly good and also doesn’t help. Its all connected. I do know that the quarterly botox injections along with some steroids have helped calm this down along with massage. I do know that I cant seem to handle the high levels of stress I used to be able to and even with all I do, a period of high stress will override it all. I just turned 65 and considering just retiring although I am not ready to. I’m thinking it might be time to take a step back and do life differently because I feel like my body is failing me and I need to take better care of myself. Clean up my diet better that I do because Ill have more time to focus on me. I’m pretty certain my body is in a state of constant inflammation…causes unknown and may never be known in my lifetime. Autoimmune? maybe. Ive had intermittant inflammation markers show positive in the since my 30’s then they normalize.

Given your issues are right-sided, I’m suspicious about a fibromyalgia diagnosis. Other nerve compression? TOS? As for your knees, any indications of osteoarthritis? How is your weight? I personally have gained 20 pounds the past 2 years with COVID and lack of exercise. I have noticed more my ankles giving me problems due to the extra weight. The extra weight doesn’t help my overall posture either.

Good luck on your journey to try and get some relief.

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