Anyone have similar symptoms?

What was thought to be panic attacks but included cold sweats with disabling limb use. Dizziness, cold sweats, confusion, poor short term memory, hard to be present, inflamation, pain, ansomnia, headaches all around or isolated, neck and nerve pain, nausea, poor stability, mixed words in speech, slurred or slow speach, tingling and numb toes, depression and paranoia. Blinded vision in one or the other eye after rising in the morning for 3-15 minutes. Double vision after a second of relaxing. Extremely tired. Feel best at twilight.
Low red blood cell count, low vitamin D, constant for years but not low in iron.
Anyone else experience any of these?

I certainly had the dizziness, poor stability, confusion... a bit like being drunk and feeling out of it, having to concentrate really hard to talk, follow conversations, walk properly... I think that was all due to the compression of the jugular veins which was causing some Intracranial Hypertension. Since surgery one side this has improved loads.

Some of the symptoms are similar though with compression of the arteries- dizziness, fainting , visual problems etc. You've had surgery though haven't you? Are you still getting these symptoms now, has surgery improved anything?

The low vitamin D has been mentioned by several members, that seems to be a common thing, as does thyroid problem. It could be that metabolic disorders can make calcification and inflammation more likely. Tingling and numb toes could be due to other things- several members have had bone spurs (? metabolic problems again with calcium levels), which could be putting pressure on those nerves, or it could be down to peripheral neuropathy, where the outer casing of the nerve fibres gets destroyed for some reason, leading to pins and needles or pain etc. This can also affect nerves like the Trigeminal nerve, giving facial pain. Have you had that checked out; they can do nerve conduction tests to see if there is a problem there?

Hello!
I know this is an older post but your symptoms sound identical to mine. I also have vitamin deficiencies vitamin D and B12 and severe iron. My body doesn’t absorb iron even with supplements and I have to get infusions.
I had surgery back in December of 2014. My surgeon did not take enough off and now I am having issues on both sides. I too saw doctor Ellison after my surgeon left practice abruptly for her own medical reasons.
Did you have any complications from your surgery with him?

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Did you ever get cold toes? Idk if it has to do with POTS like symptoms. But my toes turn pale/purple when my heart rate is acting weird.

@Calebp I had that as well and still get it occasionally. I think that is definitely POTS related. What are all the symptoms you are having? Are you able to differentiate between the ES and the POTS. Some of my symptoms overlap so at times made it hard to figure out what’s what.

Symptoms

  • dizziness/vertigo
  • Fatigue
  • Weakness
  • Pupils dilation anasacaria
  • Eyes hurt - vision hard to focus
  • Sound sensitivity
  • Swallowing issues
  • Brain fog
  • Orthostatic tachycardia
  • Transient facial numbness
  • Headache (occipital, frontal, temporal)
  • Clearing throat
  • Hoarseness
  • Lots of saliva and mucus
  • Neck pain
  • Pressure in head/eyes
  • Mid back pain
  • Lumbar puncture area
  • Muscle twitching
  • Ears feel full
  • Clicking in throat
  • Traps upper back tight
  • Formication
  • Sensitivity to cold
  • Tightness in chest
  • Throat pain/burning
  • Tmj
  • Tooth sensitivity
  • Raynauds ish activity
  • Night sweats
  • Constipation
  • Anxiety
  • Depression
  • Pain back of head when lying down
  • Pain that radiates behind nose
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Sorry for the long list I just had one made for my appointments. But some of them come and go. Some day my POTS symptoms aren’t there and some days they are.

@Calebp I have/had majority of those symptoms as well and you have to have a list. It gets so overwhelming to remember it all. :woman_facepalming:t2:

Yup it does, do you get relief lying flat more than other positions? I get probably 70% relief of my symptoms when I lie down flat. And on my IJV ultrasound study lying down opened up my IJV the most.

Symptoms and life after ES surgery:

What do most experience, even years, after ES surgery? What long term aftermath are we left with?

Nerve damage, post surgery scar tissue near carotid artery / jugular vein causing dizziness, speech problems from nerve damage affecting use of tongue, speech/memory/cognitive issues, headaches/ear aches, off balance, brain fog, localized piercing pain in neck, ear, eye or head, stiff/hardened neck mass and lack of range of motion in turning neck, vision problems, bloodwork flags?

What symptoms are most people left with for symptoms post surgery and years down the road?

How many needed addition care or surgery thereafter?

Any body deformation plastic surgery needed for ES outer neck surgeries?

How much post surgery Eagle Syndrome symptoms do sufferers experience down the road?

Thank you❤️

Hi mooncat,

I had bilateral ES surgery via two separate surgeries - the first in 11/14 & the second in 8/15. My neck scars are invisible, & my body did not lay down extra scar tissue inside my neck so I was fortunate. I did have damage to my glossopharyngeal nerve from my first surgery (it was wrapped around my styloid & had to be unwrapped so styloid could be shortened). From that, the right side of my tongue was paralyzed (not numb, the motor part of the muscle didn’t work) & took about 9 months to recover to almost normal. It has not fully recovered so occasionally I have a day where eating & or word pronunciation is a little more challenging, & I go through periods where I choke more easily when drinking fluids. I also have First Bite Syndrome that never went away completely, but it’s very minor now compared to when it started. I have nerve damage to the right side of my face which caused my masseter muscle on the right to atrophy a bit, & the skin covering my jaw joint on that side is painful if I press on it (so I don’t press on it). I have numbness along my left jawline which is inconsequential. My left styloid caused me the most pain & ES symptoms, & now the left side of my neck is still more reactive to stimulation i.e. massage, chiropractic work, etc.

All that said, the things that remain after my surgery DO NOT impact my life in a negative way. I have been able to return to a full & active life. The remainders from my surgeries are a reminder of how far I’ve come since I had ES. :pray: :blush:

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