I am curious about people’s symptoms. Were your symptoms constant or did they come and go? The weirdest thing about this for me is that my symptoms seem to move around. For example. Today my tongue hurts but yesterday it didn’t. Some days my jaw hurts and others it doesn’t. The sensation of something in my throat is pretty constant while difficulty swallowing comes and goes. Interested to hear from you all if your symptoms change from day to day like this. Also, for those of you that have tongue symptoms, I would be curious to know how they feel??? Trying to get as much information as possible before I see Dr.Hackman on May 16. ( I am searching these keywords but it’s difficult to sort through it all so TY in advance!).
Symptoms that come & go & move around are totally normal w/ ES. You may even have days where you feel pretty good followed by days where you feel terrible even if your normal routine hasn’t changed. It’s very confusing & frustrating. We don’t know why this happens. Perhaps it’s because the styloid process/stylohyoid ligaments aren’t perfectly stationary in your neck so w/ normal head movements things shift around just slightly internally & different nerves or different parts of already irritated nerves get “excited” & cause new symptoms.
I hope others share their opinions on this as I’m sure there are other possibilities.
It has been talked about quite a bit, most members notice symptoms flare/ come & go. Sometimes it’s been attributed to the weather- mine were worse in the cold as I think I get shivery & tense, being stressed also makes it worse. Atmospheric pressure has also been suggested as a possible cause. And obvs as @Isaiah_40_31 says normal neck movements can affect the pain & symptoms too. Waking up laying awkwardly too…
I hope that your appt with Dr Hackman goes well & that he can help you, let us know how you get on!
Someone on here mentioned vibrations, like a car ride on a bumpy road, was a problem. And for me I noticed using a hot tub made me feel worse. It wasn’t until I saw that comment that I put 2 and 2 together. My area at the styloid was very inflammed (believe from overusing my TENS unit … also vibrating) so anything that bumped me seemed to exacerbate symptoms. I was using my back massager on my traps and lev scap … same problem. So among many things I’ve learned in the last 2 weeks, is that area needs to calm down. Ice as you’ve said has been my constant companion and very helpful.
Would also add that since I really don’t know what the styloid hits as I turn my head in any direction or walk more swiftly or whatever movement, all are suspect and am noticing what works and what inflames.
Good job listening to your body, @Leah! That’s super important for quicker/more comfortable surgical recovery, too! Keep up the good work & don’t get discouraged if symptoms flare even when you’re being careful. That can happen, unfortunately.
This is definitely something I experience, mostly concerns with the throat pressure and discomfort.
Some days I wake up and it feels like someone hit me in the throat, or I have a small ball stuck in there making it difficult for me to swallow, breathe, or eat. It is hard to function with this and I try to remain optimistic through it all.
I also notice differences when I am driving in higher elevations - things progressively worsen, or later in the evening as things wind down.
There are times I wish I had a solution to all of this and I could guarantee success for all of you with this treatment or that treatment, but I have found it varies person by person. Nowadays, I focus on affirmations or “what if” statements to get me through.
“What if today I felt no pain in my throat”.
“What if I sleep well tonight”
“What if…”
As always I am here for all of you and appreciate your support!!
@JPB - I love that your “What if” statements are positive. I usually turn to the negative with “What ifs”. Sure appreciate your fresh new take on an old theme!!
Yes, it is something Selfpause app introduced me to. I am already a fan of positive affirmations, but it was nice to consider “What if” statements too that had a positive spin.
Tonight I have that hopeless feeling - the pressure in my throat has worsened to feeling like someone is choking me all the time - hands around my throat. It is really hard to think about living with this forever.
Stay strong - you are all amazing for your ability to persevere.
It’s so tough when you’ve had a taste of wellness then the old symptoms come & crash the party! I’m sorry they haven’t settled back down. So tough!!
When your symptoms ramp up, @JPB, do you try ice & go back to sleeping w/ your head elevated?
I can’t remember your stance on using Prednisone, but I’m wondering if a 10-day course of Prednisone might help calm things back down again. If you can tolerate it, it would be worth a try.
It’s worth a try taking the Duloxetine as it might help with any nerve pain, but not so sure about the Lorazepam? Maybe others who’ve tried these can chip in…
I’ve had good results with my eagles pain and cymbalta ( which I believe is the first medicine listed here) and gabapentin as well. I had really crazy side effects with cymbalta, hence trying gabapentin. I’m not taking anything currently because I wanted to fully feel what my symptoms are leading up to my appointment with Dr.Hackman next week. I know some people also take lyrica for nerve pain.
Hi, I want to say that these side effects are very unlikely but I had extreme mood change, anxiety, felt tremors in my body and just really dizzy and out of it. I felt like I was having a really bad mushroom trip. The anxiety was also very bad. These type of drugs can definitely cause mood changes until you adjust but my experience was extreme. For what it’s worth I know several people who’ve taken cymbalta with no negative side effects at all. It did absolutely help with my throat pain, fullness etc though. I hope you find a drug that works for you!
I definitely don’t like the sound of a mushroom trip.
For the throat pain and fullness, lately mine is unbearable - I don’t want to eat, can’t sleep, talking is miserable (and I have to do that all the time with my profession and family life), etc. The fullness of the throat and feeling like I have food stuck there all the time is something I can’t continue to live indefinitely without it impacting my quality of life and ability to maintain some semblance of happiness.
There is something about feeling like I am being choked all the time or choking on food that dulls my capacity to think and find pleasure in life.
How significantly did this help your throat and did you notice it right away?
It’s hard to say how much the cymbalta helped because I was literally high for the 5 days I took it but I’d say about 90% symptom reduction. And my symptoms sound similar to yours. Gabapentin also about a 90% reduction and much less side effects for me. It did make me a little dizzy. Did your symptoms go away for ten years? What brought them back? If I recall correctly you had surgery with Dr.Hackmsn correct? I’m seeing him for an appointment soon. I had thought from reading the forum that your surgery didn’t help but maybe it did for a while? Feel free to send me a direct message if you’d rather not discuss here.
CBD/THC pills help, but I worry they worsen the throat pain and discomfort as a normal side effect.
I had surgery in Nov. 2023, had injections in my throat area in Sept 2023. I had some great relief - not completely, but to the point where I could live with it forever if needed for a few months. Then, in the past 30 days, things progressively worsened and I now have more fullness than I had before.
Yes, Dr. Hackman was my surgeon - great bed-side manner.
My throat became a problem 3 years ago (after 7 years of other ES related pain) - it was after I was taking some trial antibiotics that had side effects with aggressive throat pain, and also started a new skin regimen (with benzoyl peroxide). I thought it was the antibiotics or skin regimen, but I am not taking the antibiotics anymore.
