Fatigued

[anon22211586]

Having had almost four days off from a physical job, and having had some good quality sleeps I am still very much fatigued.
How does Eagles cause fatigue and what can I take in order to keep on working?
The fatigue is getting worse.

[Jules]

Some members have had fatigue with ES, I know I did have jugular compression, which caused Intracranial Hypertension, & one of those symptoms is tiredness.
I’ve done a quick search of the discussions; here’s some links:

Exhaustion and Fatigue

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?

Steps back and not handling it well

I have a lot on my heart and need to get it out. After my surgery for 2 months I had some symptoms disappear. I did not realize it the first month because I was still in a lot of pain from the surgery and not sleeping well. The first thing I noticed was gone was my fatigue. I have had horrible fatigue for almost 4 years. It is not the kind of fatigue that makes you sleep all the time it is more like weakness. I would get tired putting the leash on the dog or walking up stairs. After surge…

ENT and Head and neck surgeon in Baltimore

Hey Eagles, I just became a member and wanted to let people know that there is a great pair of surgeons who perform Eagle surgery (external) in Baltimore at University of Maryland Medical Center. They are Dr. Guardiani (ent), and Dr. Taylor (head and neck surgery). They do this surgery as a team together. They both saved my life from this horrible syndrome. I had the left side done in September and the right side done yesterday 11/18. I feel absolutely great just one day out of surgery. My…

I would guess that if you had arterial compression that maybe that could cause tiredness too? Also compression of the Vagus nerve (which can happen by the styloids) can cause fatigue, here’s a quote from an article:
‘The vagus nerve is connected to many regions of the brain and body, which regulates functions in the parasympathetic nervous system (rest and digest). When the vagus nerve is functioning properly, it can help to maintain a sense of calm, reduce symptoms of anxiety and depression, and generally add to the quality of life. It can also aid in achieving flow states more frequently.
When the vagal nerve is not functioning properly, it can create chronic fatigue, anxiety, gut and digestive problems, along with many others. The vagus nerve is perhaps one of the most important especially in the modern age where stress is an everyday part of urban life.’
As for what you can do about it, surgery is probably the only permanent solution. It could also be a side effect of medications, depending what you’re taking. I guess having a good diet, & keeping up with vitamins (if they don’t interfere with medication) will help. Is there any chance of getting some time off work with ill health; not sure what sick pay you’d be entitled to in Ireland? Although I know it’s tricky with jobs at the moment after Covid…

[anon22211586]

Thanks Jules.
I’m convinced my lungs are not operating as they should, I spent a lot of money getting them tested, and I am told that they are fine, but I feel like I am being starved of oxygen.

[Jules]

It’s a worry, but try to be reassured by the tests you’ve had on your lungs…do you feel this in your chest or is it more of a feeling of not getting enough oxygen to the brain?

[anon22211586]

I can still carry out physical work with my arms, based on that I am presuming that the body is receiving oxygen, and that shows up at 98% on the finger oximeter.
It feels like a sleeping tablet is being released into the body during the day
At first I thought it was amitriptyline releasing through the day.
It used to come and go
I call them visits.
Now they aren’t visiting, they have moved in, I can’t shake the fog fatigue or lack of oxygen feeling.
Was bearable before but now I am struggling to work.
My gp has a letter sent to am ENT specialist in Bon Secours private hospital Limerick, two weeks ago.
Still no word.
I sent emails, rang several times and still have not had any response.
I have to keep going regardless, there isn’t a stay at home option for me.
So I have many symptoms, the fatigue and fog are the worst
I tried asprin to thin the blood.
I know adrenaline helps, anything to make my heart pump faster.
I base my fitness on how well I ride enduro bikes and how well I can work, now I’m struggling to do both of these things I’m starting to panic🤪

[Isaiah_40_31]

Hi optimistic,

The perception of lack of oxygen can also be linked to the vagus nerve. It could also be due to vascular compression caused by your styloid though I would expect that to show up in the oximeter test as it would be an actual problem rather than a perceived one. The vagus nerve is a devilish fellow as it influences so many of our body functions many of which seem unrelated to each other. When it’s not working right it can wreak havoc in multitudinous body systems.

Keep pushing - calling, emailing, whatever you can do to make forward progress w/ the specialist in Limerick. Just be as polite as possible when you “push”. The squeaky wheel will eventually get some grease.

[anon22211586]

The squeaky wheel sees an oil can in the distance
An email bordering rudeness got me an answer pretty quick this morning , pencilled in for the end of August, awaiting written confirmation.

[Jules]

Good news! Glad you still have a sense of humour

[anon22211586]

Thank you Trying to but at times it can be difficult

[Isaiah_40_31]

Congrats, Squeaky Wheel!! I hope the “grease” is soothing to the soul & healing for your body i.e. the doctor is helpful & proactive on your behalf.

Praying & praying you get the help you need!

[anon22211586]

Thanks I well shake their tree again today and see if anymore fruit falls off

[shayney]

following your story. as frustrating as each step is…it always leads to the next.
“even if you’re on the right track, you’ll get run over if you just sit there”…(will rogers)

[anon22211586]

Well he is right shayney.
Have been treated for so many things up to now It can wear you down, having spent some amount of time on this site now, not only reading but digesting information, learning and trying to be more empathetic towards other sufferers stories it shows that I am not alone in my struggle to find the truth
I was slightly rude towards the secretary of the professor I will be seeing, so on the day I will take chocolates or flowers as an apology
But I did get a response
I can deal with the pain and anything it throws at me if the fatigue and lung issue which I think is related to the nervous system is confirmed

[shayney]

You have been through so much. I was fortunate (i think) in that mine was discovered by a dentist and my treatment process has been pretty direct to this point. I didn’t realize until after the diagnosis that I had been suffering the symptoms for years and just living with them.
I think one of my more startling symptoms was choking easily on food…on more than one occasion, I have had to have the heimlich done on me. I just attributed it to eating to fast or not cutting my food small enough. Another is that I would since my teenage years, feel as if I had a wad of bread lodged in my throat that I could neither dislodge nor breath comfortably around. It could last for hours. That they always contributed to stress or anxiety.
Of course there are dozens…as I’m certain all have experienced. What a relief to have a diagnosis.

[anon22211586]

How long did you suffer for?
I think your dentist is a legend to know about ES
Mine said he has no idea, askes if it was a tumour he said not sure, asked if it was a spun wisdom tooth he said maybe so he pulled two more teeth, he has been pulling out teeth for a while now because of jaw pain and tooth pain, and still the jaw lines hurt, so nearly all the teeth missing didn’t need to be ripped out
Please, he asked, let me know what it is because he had never seen this before.
Unfortunately, GP’s only have a short time to read your notes and generally they act on information they already know about the human body.
Hats off to your dentist.

[shayney]

Well, I am 54 years old and I can remember symptoms going back to when I was 17. I only recently was diagnosed because my jaw lock up (could only fit a straw in) for 2 weeks. I went to the dentist but of course he couldn’t see into my mouth. He did a pan Xray and said “you have eagle’s syndrome, if you have any questions about it, go home and google it because that is what I am going to do”
it took a couple of skeptic specialists, but sure enough!

[anon22211586]

Good old uncle google😎

[emma]

I could not sleep well and had blood pressure issues. I doubt it was Eagles,but I have found out that I stop breathing at night and my oxygen got down to 87. Now I have a CPAP, it took a week for me to go back to the doctor and tell him, I want to throw the machine across the room. He reduced the max pressure to 10 and now I sleep well,and love the machine and get headaches when I pull it off in my sleep. You may be tired from sleep apnea somehow mixed up with the Eagles. i could not bear the thought of a strap around my head before the surgery, but the newest nasal pillows stay on well and use a sort of soft stretchy headband that girls used to wear. It works for me and may have helped to try before my surgeries.

[anon22211586]

Nice one, I read about these now.
It’s half one in the morning and is my second night off amitriptyline, tinnitus is loud as a death metal band on steroids, my neck hurts, my jaw hurts I can’t sleep
I want to throw myself across the room and beyond ,out of the window- but we live in a cottage
The professor I am booked to see is still on leave, his secretary, who came back from leave today called to say that she received my request last week to see the professor, however ,he returns 24th of this month, they may fit me in after cancellations, would be September before she knows, she then suggested A&E and the public route.
So I rang another private hospital to ask about 3D cat scan of head and neck
They can fit me in this week, prices €240 upwards- cash is king here
So they said only if the receive a referral, by fax will be fine
So I called my go
The secretary said my gp will call me tonight and enquire about the broken styloid , after sending the fax and bless her cotton socks, she never called
If I have the scan, I can show it to a professor who only works private any way and is only really ENT
The public system is the same, after a chat to Limerick ENT about the broken styloid the other night they admitted I know more than they, Eagles? Like the bird? Never heard of it!
The Dr. in St James I learned last week has retired from public duty, he is Ireland’s only Eagles specialist
€20,000 for the operation, my insurance will not cover it, to see this man is €250 a visit
I call that immoral
In Ireland wheels can squeak as much as they want, they will never see a drop of oil
So the meds are in the bin except for Nexium and some Valium which I purchased from the traveler community
I crashed my enduro bike on the mountains yesterday, I damaged the groin so I need to keep paracetamol
The heart is out of control, it beats like I am running whilst lying here
I struggled to repair the trucks at work today due to brain fog and I will be purchasing some cocaine from the traveler community to help me perform the daily tasks
My insurances are all up to date so if I do die the mortgage will be paid and my partner receives a lump some
So the styloid can go to hell, the broken part is floating in there somewhere where it can stay,I will try and fool my mind into believing I have fibromyalgia, and carrying on like I have been for the last five years and then some
Looking further back I am pretty sure it’s been causing stomach issues and migraines for years
So I give up. If it cuts my carotid artery I don’t give a f***,
Two things I will not do is drive a truck on road test or take a pillion on my road bike in case it does,
That about sums it up, this is my god knows what night of no sleep, I must be up in five hours and I am wrecked
My state of mind is okay, I am not concerned, angry , resentful or thinking of suicide I only don’t give a fiddlers f*** about it any more.

[Jules]

So sorry that you’re struggling so much…I can’t offer anything much except to say that I’ve listened I hope that the consultant will be back soon & that you can get a cancellation slot, & getting a CT in the meantime may well speed things up a bit if you can.
Thinking of you, take care at work & be careful with what you’re taking…