Hello, a couple weeks ago I started forgetting normal things at work. Things I’ve done regularly for years. I don’t typically drop big balls like that. I couldn’t handle stress or think straight which isn’t like me at all. I thrive under pressure.
Then I became exhausted (which doesn’t really come close to how I feel). I’m so weak nd fatigued that I can hardly function. I’ve been off work since last week.
Drs are doing tests but I think that it’s the Eagles. I’m afraid this is the new normal until surgery Oct 2!
Does anyone have any experience with this excruciating fatigue nd weakness. I also get lightheadedness very easily nd sometimes vertigo.
Any input would really help. It’s too soon for me to claim short term disability and live on limited income.
As always, I sincerely appreciate my virtual friends that really understand!!! HUGS 
Other have mentioned feeling like this, and a couple of members have found this and the vertigo really quite debilitating.
I had vascular ES, with both jugular veins compressed. This was causing symptoms of Intracranial Hypertension (increased pressure inside the head), like brain fog, off-balance feeling/ being light headed, tiredness, pressure in the ears… I felt like I was permanently drunk, having to really concentrate hard to follow conversations, walk properly etc. It improved massively with the first surgery. I think with vascular ES, many doctors underestimate the symptoms, but if you think about it, having major blood vessels in your neck constricted is not a trivial thing…
Sorry that you’re feeling so much worse- hope that maybe you can get in earlier.
I’m so sorry to hear that. I totally understand the feeling. I have been experiencing a drunk feeling, lightheadedness and a slight off balance feeling, especially in the dark. Driving at night is horrible. I avoid driving as much as I can.
I am struggling to find a doctor who will agree that my symptoms are related to Eagles. I am praying that the neurologist I see in September will do something. I’m tired of feeling like this. Best luck to you. Please keep us updated. Take care.
I’m newly diagnosed myself and just had a angiogram. They found all the same things. Cranial hypertension, and hypertension through out my entire veinous system. Compression on the jugulars, and carotid. They said that they like to see you at a 5 for pressure and I’m at 18-23. I don’t know how bad that is but I’m certainly feeling horrible. Is that what I have to look foward to, searching for a doctor who believes it and agrees to do the surgry?
Hopefully as you’ve got the IH confirmed, then that would help you get taken more seriously. I just wish that some of the more experienced (and enlightened!) doctors would publish papers so other doctors would become more aware of the variety of symptoms… When you got the results, did they suggest a cause, were they aware of the possibility of styloids causing the venous compression? Have you had a look at the doctors list to see if anyone’s near you?
Sorry, zebra3586, the above post was a reply to you. Have you tries either of the Wisconsin docs on the list? Or is it more difficult because of the EDS?
Sorry that you’re having so much trouble getting a doctor to believe you- hope that the appt. in September works out better. Have you tried any of the doctors on the list and got nowhere with them?
The doctor that did my angiogram is the one who said it was like Eagle’s Syndrome. I think the only thing he didn’t realize is that it can compress the jugulars also. His nurse called to say he measured my styloids and they are not abnormally long, but admitted that length doesn’t matter. She said he has an ENT in mind for the Eagles as it is outside of his scope of pratice (although he was thinking of writing a case study/journal on me lol). There are two doctors here that deal with Eagle’s Syndrome. They are in a different network but I can easily schedule with them if I feel that it’s necessary. Today I had a really bad spell and was driving at the time, so I sent him a message telling him my symptoms, that they are increasing in frequency and are not the norm for me and could this be from the compression of my jugular, carotid, and superior vena cava that he found? I probably will hear back Monday or so from him and I’ll post on here what he says. I have a echo on my heart scheduled for the 25th and then I meet with the entire crainal surgery team on the 29th, and meet with him ( Dr. Wolf) separately the next day. I’ll post again after that. I think he gets what is going so that’s good. But I have a thymus mass right next to my superior vena cava that they won’t even touch so that also has to be factored in along with Eagle’s as a culprit to. He’ll see it on the echo and bring it up to me I’m sure. It’s all so strange, my symptoms changing. I always have low BP with tachycardia, with occasional spikes. Now it’s that drunk feeling with slight head pain/pressure, numbness and HIGH BP and my heart rate DROPS that’s totally off for me, I’m ALWAYS tachycardic. Sorry this is so long but these new spells got me really rattled with 4 kids to drive around.
That is scary, I do feel for you… BTW the styloids can also compress/ irritate the vagus nerve, other have had problems with that so maybe it’s affecting your heart rate?
I have to say I was getting to the point of giving up driving because of the off-balance feeling before surgery; I didn’t feel safe, but luckily it all went after surgery. Do you have roundabouts on roads in the US, I don’t think you do? Going round those made me feel grim!!
It all sounds complicated, but hopefully you’ll get some clarity within a couple of weeks. Thinking of you…
Yes, some roads have roundabouts here. They are infrequent though. Some people (in my family) think all intersections where there are currently traffic lights in this country should be replaced by roundabouts to help traffic efficiency. That would be a costly change, plus people in this country aren’t used to them so I think there would be a lot more accidents at least initially if we were to switch over to them.
zebra3586 - I had heart issues as one of the symptoms from my ES. If I exercised hard, my blood pressure would drop & my heart rate would go all wonky. I would feel really awful for several hours after exercise. I would also get winded & light-headed & unable to catch my breath for awhile after a hard aerobic workout. It was pretty scary! It took about 6 weeks after my first ES surgery for these symptoms to subsided, but they did & have not returned. I had that surgery in mid-Nov. 2014.
Yes we do have round abouts here lol. I’m not familar with the vagus what is it and where is it located?
Ok just researched the vagus nerve. What struck me was the bowel issuses it can cause which is a problem for me and the numb tingling in my hands and of course IH of course. I’m going to ask my doctor if he found compression there also. How is a compressed vagus nerve fixed/treated? And what would be compressing it?
Your styloid process or calcified stylohyoid ligament could be compressing or irritating your vagus nerve. Vagus nerve compression/irritation can be one of the problems w/ Eagle’s Syndrome.
I see, how/why would the ligament be calcified?
By definition, ES is either elongation of the styloid process(es) or calcification of the stylohyoid ligament(s) or a combination of the two. No one knows for sure why the ligaments calcifiy or the styloids grow longer than they should. It seems to be something that usually occurs in adulthood (though not always) & may be a function of head/neck trauma, surgery in the throat/neck area, or some genetic predisposition.
I had partial calcification of my s-h ligaments & elongation of both styloid processes. I had vascular & vagus nerve symptoms from my right styloid & only pain from my left styloid. My right styloid grew more straight down & my left grew more in line w/ the original angle of the styloid thus the 2 styloids in elongated form caused different sets of problems for me. My ligaments didn’t cause a problem as far as I know, but some people’s do. I had everything removed - both styloids & both ligaments, & I’m functioning normally again.
I know that Samji doesn’t believe in Vascular ES. doesn’t matter to me, if he believes in it or not. He’s successful and that is what matters!
I did get some information about my MRI w/contrast in the veins in my neck. I need to meet with my GP so that he can help me understand what this means on the report I just received:
"there are a couple of mildly abnormal findings on the MRI. It is possible but not likely that the vertebral artery abnormality is causing the vertigo; it may be worth having you follow up with a neurologist to review these specific MRI findings. "
Although I don’t want to see a Nuerologist. I’m not in the mood to help another Dr understand ES. I just can’t handle another shoulder shrug!
I really do, though, want to know more about what they see. I have a huge feeling that I am in for the long hall until I have surgery in a couple months!
I’m tired, very tired and not feeling very strong right now. I am grateful that I have the LORD to rely on!!! HUGS
So sorry to hear that the MRI showed something, but that might be a good thing. I totally understand how you feel about trying to explain Eagle’s to another doctor. I took pics of my elongated styloids & just showed the pics on my phone to any doctor I saw that needed an explanation. It helped. I will be praying for you to have the energy you need to get ready for & go on your vacation & to enjoy it. Rest as much as you can now & listen to your body.
The time will pass quickly & you’ll be in CA for your surgery & then it will be done & you’ll be healing.
Numerologist doesn’t see anything wrong with my tests, thankfully, but that means just what we thought. This is the new normal until I have surgery. 
Ok, at least I know. Prayers for possible financial strain now since I will not be able to return to work.
Also, waiting for the last approval from the insurance company that they will cover surgery.
Thinking of you nd appreciate your support!!! ️:heart:️:heart:️
Hello, I saw you had mentioned vagus nerve involvement with your ES. Would you mind sharing those symptoms? I’m suspecting that I may have vagus nerve involvement. Ty