Struggling more than usual lately - self indulgent rant

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I’m struggling more than usual this last month.
My symptoms seem to be multiplying and getting worse, almost daily. I hardly sleep at all anymore - a few hours here and there. I gave in and asked for some pain meds from my PCP, which I really don’t like to take and he doesn’t like to prescribe, but I just need a break from the pain. Like an ice pick in my neck, then down my shoulder. Plus, the regular ear/neck pain has been increasing.

I’m also getting - like, new versions of vertigo. Usually, it feels like I regressed to 5 years old and decided to spin in circles until I fall to the ground only not as fun as it was back then. Lately, sometimes the world just tilts. No nausea, it just tilts. No warning.

I’ve wet the bed 3 times. I think this might be due to not getting any sleep - when I finally do fall asleep I just can’t wake up in time to make it to the bathroom. Still.

My symptoms have always been on the left - I even have lower back pain on the left. In the last month, my right ear has been ringing and is painful, and it’s itchy and crusty.

I’m terrified of surgery and/or procedures (I had some “medical trauma” a few years ago and still get flashbacks sometimes) but I’m ready for them to do whatever they need to. I am experiencing real cognitive decline, and it terrifies me - I’m on leave from work but I won’t be able to go back if they can’t fix me.

I have a few good friends. I’m a bit of a social introvert - I have a lot of aquaintances, but only a few people I consider “support network.”

My “chosen family” dumped me back in October. I’d been part of their family for 15 years. Thanksgivings, holidays, I watched their kids grow up and my friend texted me that “it seems like you are dragging this out on purpose” when I was hesitating over getting the angiogram. She has ghosted me since then.

Even if someone is finally going to operate on me, I don’t know how I will be able to take care of myself. I’ve got a dog, and I’m currently renting a split-level. I had planned to buy a house this year but I can’t focus enough to do that, not to mention if my leave from work goes on much longer I won’t be able to pay for one. I am going to have to renew my lease at this place.

When I lay down at night, my nose gets so plugged up I can’t breathe. When I roll over in bed (such as I can) I see circles in my eyes, and I now get vertigo. In bed.

I’ve gained 50 pounds in the last year. I used to be a very active person and never struggled with my weight but - wow - I don’t even recognize myself. Not to mention, my joints are killing me from hauling all this extra around.

I thought we had a diagnoses and a path forward when I found out I had venous thoracic outlet syndrome. Then the doctor said that even though they had looked at Eagle’s syndrome and ruled it out, they had only looked at arterial Eagle’s. So, another CT and it turns out - HA! - my jugular vein is compressed! I still don’t know if they are going to operate, or when. I have a follow up in 2 weeks.

I can’t do anything I enjoy doing - working, reading, puzzles, climbing, sailing, biking, dancing, yoga - I can’t even drive to see people. Grocery shopping is more difficult than ever. I can’t even walk. I miss my job - I love it so much that it’s also my hobby, but I can’t do much there either.

Should I get a recliner? I think that may be the only way I can sleep!

Also, what are the chances the random, intense tearing in my left eye and the random, intense left nostril gush is CSF?! I just read about that, now that I’m looking at an Eagle’s dx again.

It’s as if my body is trying to strangle me… “the call is coming from inside the house…”

This totally sucks.
That is all.

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I’m so sorry that things seem to be worsening daily for you; I know that before surgery I was starting to feel really quite ill, desperate to get it done, but I was still able to function most of the time, so I really sympathise with you :hugs:
I did sleep propped up, it definitely helped with some of the vascular symptoms, & ended up in a recliner before surgery most nights, so that might help. Certainly laying flat will make symptoms worse if you have jugular compression, so try a wedge pillow & a few other pillows on that.
It could be possible that you’ve had a CSF leak, sounds like you’ve read a bit about that on here, there have been mentions in several discussions about it & getting tested.
So sorry too that you’ve lost family/ friends over your illness, sadly members have often talked about that before. So feel free to rant!
I’d try not to think about how you’ll manage surgery, cross that bridge when you get to that point…you may find that recovery isn’t as bad as you think. As long as you’re not on your own the first night- & if that would be the case maybe you could stay in overnight?
I hope that whatever painkillers you’ve been prescribed do work for you & that you’re able to get some proper rest.
Sending you a hug & hope that you’re able to get some help soon :hugs:

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@tokenegret - I’m really sorry to read about your pain & other challenges & especially sad about your loss of family & friend support. That just isn’t right! I am glad you felt free to vent here!

Your bladder issues can be a function of vagus nerve dysfunction & since we know the vagus is almost always affected negatively by ES that is a plausible explanation for that problem.

I have been praying that your next appt w/ Dr Omlie will be day vs night different than the last one, & you will see his compassionate, helpful side at your next appt.

We are always here for you. Please continue to “keep us in the loop”. :hugs::heart:

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There’s nothing more that I can add that hasn’t been stated in our private exchange and what’s been stated already by Isaiah and Jules.

I just want to reiterate that you are validated and your feelings are ok! I’m so glad you feel comfortable and safe enough to share even the raw uglies of this path. The folks in this forum are second to none!

Take things day by day/step by step, be easy on yourself and please let us know how your appointment goes! I for one will be anxiously awaiting. I’m confident Dr. Omlie will be a great addition to your “team” and together you can develop a path to what we all pray will be resolution of symptoms!

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My husband just recently started with Botox injections from ENT at OSU hospital & they seem to be helping with pain.

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Thank you for this information, @Kvandtkv! It may be helpful for some of our members. Is your husband considering surgery for ES or just doing symptoms management for the moment?

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Just doing pain management. Dr does not think he will have to have surgery. Styloids are I believe 4 1/2 cm & 5 cm, he is 59 and he doesn’t think they will grow that much more in his lifetime. He won’t consider surgery unless they are I believe 6 1/2 to 7 cm unless they cause problems. His main symptom is ear pain & headache occasionally.

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WOW! His styloids are VERY LONG! Many of our members who have surgery have stylolids in the 3.5-4 cm range. Symptoms do depend on the nerves they’re irritating as it’s believed many people have elongated styloids but no symptoms.

Honestly, I disagree w/ his doctor. There seems to be no rhyme or reason why styloids continue to elongate, & age doesn’t seem to matter. It’s all based on what caused the elongation in the first place. If those pressures continue to be exerted in the neck or on the skull, the body will continue to lay down calcification.

It would be great if he didn’t need surgery, but bear in mind that because he has symptoms, he has nerves that being irritated & potentially damaged. That is something to consider as well.

Has he thought about getting a second opinion? I think most of the more experienced ES doctors on our list would say he is definitely a candidate to have them removed now & waiting could potentially make his situation worse. I acknowledge it’s his body & his choice to manage ES how he sees most fit.

I hope the botox injections continue to help!

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His dr is one of the best in the US. Dr Forrest OSU Columbus, Ohio. But he doesn’t seem to think he is a candidate for surgery. I’ll ask him about the nerve damage possibility when we see him on May 20th. Thank you for your insight.

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Dr. Forrest has done ES surgery for some of our members in the past. I haven’t heard him mentioned for awhile. I wonder if he’s changed his opinion of when ES surgery is necessary & not necessary. I’m really glad your husband is seeing a doctor who knows ES.

I want to apologize if you felt I was trying to push surgery. I’ve been on this forum for going on 8 years & have read the experiences of hundreds of people over that time. The majority who have surgery have a good outcome & good recovery from symptoms. Sometimes there are residual symptoms that remain after surgery but they are usually “incidental” compared to their original state.

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