Wish we could help. I wanted to just die,not commit suicide,but just leave because it seemed there was nothing left. Please be careful with the medications.I hope that you have better days and something positive happens soon. Sometimes, in the darkest times, something good happens that gives us hope. i hope you are blessed with something good soon.
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Hello,
Putting things into words is such a powerful step! Bravo for the fight we feel in you!! Anger gets answers!! Write and write and write about you frustration here! Be open to encouragement and ideas. Reread what you wrote and add a million exclamation points! Just please donāt give up!
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I agree Isaiah and Jules. First thing that came to mind was vagus nerve compression with Optimistic? Its possible it could cause some dysautonomia-like symptoms which would cause fatigue and alot of the symptoms including sleep disorder. It also can cause tachycardia.
As a side note Optimistic, my daughter has dysautonomia and has bone crushing fatigue. Some docs with her condition give RX for ADDERALL to try and boost energy. Probably better and cheaper than cocaine. 
If you can find a neurologist that can give you nerve blocks and/or steriod injections in neck / jaw, it helped me when I was in the worst pain. I received oral dexamethazone when I didnt know about the injections. It might get you thru to appt. I know the feeling of just wanting to cut your head off when it gets bad. Hang in there. You are on the right path to getting help with this.
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Thanks for all the kind words and I appreciate that many have been in a similar situation to my own
It has been a difficult week, made more so by the my request for a 3D CT scan spending most of its week in a in tray.
I am booked in for Monday with a cost of ā¬520 to me, I did get angry with the clinic, I think if I hadnāt then I would have had another week of suffering, waiting for the appointment.
So much red tape to cut through.
In Ireland one needs medical insurance, or a medical card if you fall in the poverty group.
If you have not either then you only receive third World medical care
I found out that the USA loses 46,000 untreated patients per year as they havenāt medical insurance, and with the decline of the NHS since the early 1970ās the UK are going the same way, so I blame my own situation on the accident that caused me to cancel my own insurance five years ago.
It has been an eye opening experience.
We all find comfort from various sources, my partner from her horses and me from my motorcycling and thats what on the agenda this afternoon.
I was just checking in to thank you for all and let you know I didnāt do anything stupid although I learnt how to tie a hangmans noose(I can use it to tie down the dirt bikes) and I know how much ketamine it would take to kill me, it is right what other people say, sometimes you just donāt want to wake up.
I have been clean since Wednesday except for paracetamol and some strong Belgium beer.
I have a heart that decides to increase blood pressure without me doing physical exertion, that took a while to get used to and the tinnitus can go from a steady hum to a click sound and then an increase in decibels that causes me to wake up in the belief that a helicopter is above the bed trying to land.
Other symptoms are neck rotation is severely comprised, voice loss at the end of the day, waking up choking but apart from the fatigue and brain fog the headaches and neck aches are the worst.
Roll on tomorrow and hope I can share an image or two showing what has been driving me insane.
Thanks again
your symptoms sound much like mine. I agree with others that your vagus nerve could be involved also glossopharyngeal and carotid. My carotid and glossopharyngeal were interfering with each other. Headaches were awful. Fatigue, neck pain. After surgery on the left side my stomach and acid reflux cleared. It took time for the neck and headaches to abate. I now have a Cpap and get injections for migraines, so some of it may be other or just originated by the eagles. Still, I was better after surgery and supremely better with cpap. I do not think cpap would work prior to surgery because headgear would have impacted the severe head and neck pain. Praying that your CT will flip the pages for you. Mine opened eyes and doors.
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I do hope that the CT shows clearly whatās going onā¦make sure that they scan your head down to at least they hyoid bone, & ask that itās evaluated for ES, i.e. that they look at styloid length, angle 7 width, & also that they check to see if the stylo-hyoid ligaments are checked for calcification. If your symptoms are worse if your head is in a certain position, itās helpful if they could scan you like that, but it may not be possible. & if you can get hold of the images & scan report thatās useful as you donāt want them getting lost in the system or sitting about somewhere!
Thinking of you, it does all sound a nightmare with the healthcare system; I hadnāt realised Ireland was like that.
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They said it will be brain head and neck down to shoulders
Trying to get confirmation of what my GP asked to be done and what the radiologist will scan has been a task in itself with numerous phone calls.
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Emma
How bad was your fatigue?
Was you taking time off from work?
Did you take steroids or other drugs to help you and did they work?
I think you have hit the nail on the head
I have had a two hour intensive enduro ride and was breathing fine
Now I feel like I need to make the lungs work
I have been taking notes and would like to thank you all again for your help, support and knowledge , believe me ,it has made a difference .
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optimistic ~
So glad to know youāve been able to minimize your drug intake since Wed. That is FANTASTIC!! I was quite concerned about you after your last post.
Iāll be sending up prayers both that the CT scan clearly shows your āinternal situationā AND that the radiologist who reads it will have a clue about Eagle Syndrome & will clearly comment on it in the report.
I had the opposite problem w/ blood pressure. Mine would bottom out then my heart would race like a race horse which made me feel very light-headed/dizzy. Crazy stuff!
We would love to see your images. Canāt wait for you to share them! So sorry for the financial drain this is becoming for you.
Not happy with the CT scan
I have 160 photos of my brain ( not much of it to amount to 160 unless they have been duplicated 159 times)
And I am not able to remove layers of pivot the images as seen in similar 3D scans I have seen
What I can see is elongated bilateral styloids.
Missing teeth which didnāt need to come outš
Styloid isnāt broken, it has moved its position lower down , it is now sticking almost into the right rear tooth, and is pushing its tip into a muscle that goes from around the lower jaw to the hyoid bone.
I can push hard into the mouth floor and feel the sharp point
This muscle is tender and tight, it attaches to the hyoid bone but not visible in the scan.
I figure the motorcycle helmet strap ( which I do always have tight) may have moved itās position upwards, after a tumble up the mountains and caused it to push through the rear of my mouth
I didnāt snap it, I moved it.
What I can also see is a dark line over the left styloid
They are longer than the tonsil fossa?
The GP called and said the radiologist said it is calcification of the styloid bone
Whether or not it is Eagles will be confirmed by my visit to a professor of ENT soon as an appointment becomes available ,
It depends on how the pictures are interpreted I guess.
Also I notice an artery rubbing over the right styloid
My Gp is dismissive about this and also any nerve damage,
I must take paracetamol, anti inflammatory tablets and I asked for some Valium to help me relax at the weekend
I left my wallet in the van, so I jogged a 4km distance to retrieve it arriving back at the hospital looking and sweating like a Covid victim
Was asked a few Covid questions and allowed to cool down before the scan so I must start believing that my lungs are ok and try to gain control over the negative thoughts I keep having, people who run 4km fully clothed in a 24 degree rain forest type atmosphere have good lungs!!
Is only nerves, blood restriction and a couple of bone spursšŖš» I am NOT dyingā¦ yet.
I will put up some crap over priced photos when I can figure out what is wrong with the memory stick
I am more optimistic today then I was yesterday 
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The styloid looks like the face mad old woman holding her arms up to her head
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Hi optimistic,
You did a fine job rendering the CT scan in 3D! Your right styloid is very thick & curved in toward your jawline, & your left one is either in two pieces or your styloid is elongated & your stylohyoid ligament is calcified below the tip of the styloid. Both are possibilities. Any doctor that canāt see this as ES needs a re-education about ES. Itās no wonder youāre having the awful symptoms you are.
I recommend you take a printed copy of a research paper that discusses nerve & vascular compression by the styloids to the ES doctor when you go - just in case he has doubts.
Here are links to detailed posts which you could print to give to the doctor:
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The definition of ES is elongated styloid processes &/or calcified ligaments which cause pain, so by that definition you have ES! As Isaiah says, taking copies of research papers with you to show a doctor may help.
Glad that you feel a bit more positive & that your lungs clearly work okay! Hope the medication helpsā¦
Let us know when you have your appt with the consultantā¦
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Hi optimistic,
Hereās another link to a scientific paper I just found on ES. Itās pretty basic but concise in describing ES & symptoms causes.
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Thank you both for this information, I will be armed and ready on the day.
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Please hang in. Stress of being ill can make matters even worse. When I was diagnosed, I ran out to Attorney and updated everything. Iām my own worst enemy. Iām in U S , so frustrating to find help there. Praying for you. When I get overwhelmed, Stop and breath deeply 10 times. You are not alone.
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Thatās tough! I hope you can come to some decisions about your treatment soon!
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