Is anyone familiar with Ernest syndrome? I was reading that it is similar to GCA symptoms.
I know I am grasping at straws but since the prednisone is not working, just trying to see ifbthere maybe another explanation.
The pain in my temples,jaws and back of head are worse than. Ever before.
I had never heard of it but on reading about it, it does sound like possible candidate. It would be a case of finding someone who would be able to do the right diagnostic process. ENT doctor?? What is it like around the jaw, throat and teeth? What dose of Pred are you on now?
My jaws, temple, and over my head down to the basebof my skull is hurting worse than anytime in my life.
I am on the last day at 20 mg.
3 days at 60
3 days at 40
3 days at 20
There are no doctors within 800 miles of me who treat this if it is that.
My first question is, although you have been on Pred for only 9 days has the Pred ever worked on any level? Secondly, have you reported this to your prescribing doctors yet? They really need to know how desperate you feel. Have they considered a development of previous issues. An ENT opinion might be worth pursuing if they are not moved.
While you are waiting for an answer, a bit of essential housekeeping, especially when stressed if attending to the sternokleidomastoid muscles. If they are locked up, they can mimic GCA. I’ve been nearly caught out by this a few times.
healthline.com/health/stern...
I have seen several net's. No help.
It's the weekend, so can't get ahold of me GP.
My only option is the ER, but they just keep treating me for migraine and send me home.
GOD help me
Sorry but can you say again exactly, what is *different* about your migraines and the pain when your previous eyes issue cropped up?
Even if we did come up with the correct diagnosis, you would still have to communicate that well to doctors why it isn’t migraine etc in order to not get the same verdict each time. As I know from my own experience, going in opening with words like one feels like one is dying and it is the worst abc ever, usually doesn’t help however desperate one is. One way or another you will have to see a doctor as our practical use is really limited and you need an examination. The choice is try to get to a larger hospital today or wait for your GP tomorrow. Have you told anyone near you?
I havebhad migranes for over 40 years, so I have had thousands of them and know what they are.
These headaches are more like the worst pressure/muscle pain I can imagine.
As soon as I get out of bed and stand up, I can feel this pressure crawling up from my shoulders, into my neck, over my head and into my face. It is a 10 pain that is there until I can somehow fall asleep at night.
It gets so bad that even fentenol sometimes won't stop it in the ER.
It may be an good idea to get any of your MRI reassessed by a consultant whom has experience of spotting Chiari1 as many do not spot it , especially if it's progression is slow and the pressure point not at the stereotypical extreme. Some other conditions can also activate and go into remission that cause compression , so unfortunately you can find in the day if the MRI you can appear asymptomatic.
I sure will.
I was reading your story and wanted to give you some advice based on my history and the many many people I know that have very similar issues.
Have you discussed with a doctor about a possible spinal CSF leak or more likely, a Venus fistula.
Here in the US, there are several specialists who have discovered that people who have EdS, POTS, Chari are being misdiagnosed. There are hundreds of stories about people in your situation.
If you haven't already, I recommend you listed to Dr. Carrol, Dr. Schievink, and Dr. Callen about this on YouTube or the CSF foundation site. Dr. Carrol's daughter went through this before they figured out iw was a leak.
I pray for you my friend.
Thank you for your interest.I have had an assessment of recent and historical MRIs done by the Specialist team at Walton Centre if Neurology. They wanted to be sure that I didn't have Chiari1 but also did assessments for CFS issues . Since getting with this team I've received excellent care and some of the more cutting edge treatments available in the UK.
My POTs is caused by Chronic Dysautonomia from a genetic macro electrical issue causing Sinus Node Reentrant Tachycardia. I don't have Chiari1, I have Vascular Migraine causes and many of my cranial nerve problems are caused by the narrowness of my skull and jaw ( I am Marfan's Habitus in certain characteristics) and subluxation of small bones from EDS causing pressure at times on various nerves and adding to the Chronic nature of my Migraine spectrum.
Fibromyalgia and a full spectrum of Migraines( many triggered by autonomic dysfunction and B12 deficiency from pancreatic enzyme insufficiency) and Cluster Headaches add to the general pain and confusion. It was very confusing when I was less knowledgeable on my condition and had to try and distinguish between which issue was giving me the most problem each day , GCA , EDS injury, Migraine or Fibromyalgia!
I will look at the links though because we all need to keep learning , thanks so much for sharing this , take care , Bee
I don't know how you were able to get diagnosed with all those issues.
The doctors I've seen would not waste there time trying to dig deep enough for that.
My neurologist thinks I have dysotanomia, but no one even tests for it in the state I live in. Just told me to eat a lot of salt, which I do.
Glad you are getting some help. I wish that were the case for me. I don't even have medications. I am just riding it out everyday.
That is what I was like 5 years before eventual diagnosis of GCA. It also felt like boiling water running down the back of my neck/shoulders. I was put on morphine patches for a while to try to get rid of the pain but that did not work. It settled a bit and was bearable for 5 years during which time I was visiting an osteopath regularly. He helped for sure. I got used to pain. Had to.
We're you CRP and ESR raised?
Mine is normal, and after the prednisone trial I just completed. I guarantee I won't be abltnto get anyone to consider it.
Can youbdescribe how your symptoms started and progressed?
Would asking for an ultrasound on my arteries benof any help?
Thanks so much..
Supposedly early on my inflammation markers were up but not enough for that rheumo to be worried about. I eventually got diagnosed with a PET CT scan as they were convinced that I had muliple myeloma.
I have thought I have myeloma as well. The bones in my back are decentigrating.
The back pain is incredible.
Prayers to you.
Really 60mg for just 3 days and then cutting down to 20mg by day seven is not giving your body much help. Did you ever have any relief at the beginning? Can you tell the ER you have GCA and do not have enough tablets?
I didn't notice any real change on 60, but whatever this is, it's getting worse. I didn't get relief on the 3 days of 60 or 40 or 20, but I seem to be going downhill fast.
Every muscle in my jaws, temples are in a knot.
I would have to try and get to a larger hospital
The one where I live can barely spell GCA. No resources.
Is the jaw pain all the time or only when you eat? Perhaps you needed a slightly higher dose than 60mg and should have hung on until at that dose things improved. Your local ER should be able to offer steroids??
It is all the time now. Severe and my temples and top of head are killing me. It is like the worst tension headache anyone ever had.
Nothing is working.! I feel like I am in deep trouble.
Missus835 has some good points. You do need a much larger dose of steroids than 20mg though.
Are you able to show the ER the responses you're receiving here? Sometimes a picture is worth a thousand words. If you sound unsure to them or cannot articulate your dire circumstances, maybe seeing this would help?
I have shown them the reports of the doctors I've seen, but it really doesn't seem to help. They just want to give me pain meds and get me out of the way.
I need to be at Mayo.
No. I mean the replies from our forum. There is Mayo connect a forum like this.
No, I haven't been back to the ER since on this forum.
Two of the hospitals I have been to have told me not to come back. They are not equipped for these issues.
They have told me to travel to a larger city.
.. and is that possible? Bit of an off-hand comment, but if they cannot help you, guess it’s all they can say.
No. Broke and no one to take me.
Sorry to hear that….
I was in a similar predicament here in Nova Scotia. Had to fight tooth and nail to get the care I required and at first I'm sure they thought I was a hypochondriac. My health declined in the meantime. But we are our own best advocates in this world. Finally, I'm on a role. Do you not have anyone to drive you to the city? Church, family, friends? Train, bus? I'm sorry Harrison, but have run out of answers other than it's not something that can be helped with Pred (which is not a cure by the way) or you weren't even on a high enough dose for long enough. I've been on it for 2 years. If it was a cure, I would have been so by now. You can make an appointment on line with Mayo Clinic Connect. Although getting there might be an issue or perhaps a virtual appt. to start?
I am broke and my family is done. We are all so tired. Just two ofbthe surgeries I had in the last three years were $200k. I lost my job and can barely leave the house.
You are correct. I don't think this is GCA, but could be. I guess I will know if I stop seeing.
Thanks for the support.
I'm so sorry Harrisonboy. There are times when I've been with the "family done". I cannot get out of my apt. without help. I'm pretty sure they would not want you to lose your sight. Reach out. I also get the broke part. Wish I could help, as I'm sure we all do. Hugs to you.
I am praying for all of us.
Have you had a recent MRI of the head , neck and upper spine? If so , what were the results.
I am asking because apart from Ernest Syndrome there was a post yesterday about a person whom was diagnosed with Chiari 1 Malformation, and that condition can also cause symptoms similar to GCA.
Of course it could still be GCA but the length of time you were on the higher doses of Prednisone was not adequate for you , looking at your figures you certainly seem to have rushed down the doses very quickly before actually having enough time for a dose of 40 mg or higher to show a significant change. I was on 50 mg fir 5 days and 40 mg for 10 of 14 days before really having things under control.
Other possibilities can still be intermittent TMJ with Trigeminal Neuralgia , as the TN can also trigger chronic severe migraines, especially if you were prone to migraines in the past, ear pain , tinnitus and vertigo as well as severe upper body pain and stiffness , nausea and dizziness.
Migraines are not all the same either most people whom get a standard or occasional Migraine don't realise just how severe and diverse the symptoms can be .
Vascular Migraine is now looked at under the umbrella of heart foundations. Various less common Migraine subtypes cause the intense pain in the head , but also body stiffness and even cardiac and stroke like symptoms .
A variety of headaches , which I suffer with myself , are Cluster Headaches and these can also cause symptoms very similar to GCA , and although they can be helped by Pred , they aren't in many cases and require other varieties of medication, supplemental oxygen and often injected or IV medications for them to be brought back under control.
You may benefit from requesting thorough testing by a Neurologist if a more rigorous treatment of GCA doesn't bring results.
Whatever cause it may be do go to A and E if this is severe as well as protecting your eyesight you need better pain treatment and it may be the only way that they will be able to get to the root cause of your issue if they tests required need to be conducted when your symptoms are active.
In the meantime , don't exercise your head and neck except with very gentle movements , with hand support to reduce stiffness or symptoms if that helps.
Try to move your body slowly to look at things and don't quickly move your head and neck.
Unless it is a muscle / skeletal issue physio exercises often make these problems worse.
Keep your head and face protected from the elements and don't get too hot or cold.
Use supportive pillows , including a neck pillow to support your head and neck in a comfortable position while you sleep.
Good luck and keep us updated , Bee
I have had at least a dozen CT MRI's, but scheduled for another MRI this week. I ambseeing a pain management specialist who is looking for spinal cordnissues, CSF Leak or Venus fistula.
Thanks so much.....
Hopefully the MRI and the pain management specialist can help. We can give you ideas and also support, but the professionals are the ones who can answer your questions and recommend what steps to take.
By starting new threads the extensive background to this very difficult and painful problem for Harrison boy is getting lost. I am not sure it is on his best interests to be raising the question of ever more esoteric diagnoses.
As questions have been ongoing for almost 2weeks, not sure any of us can help - much as we would like to.
As we have said, proper sensible medical advice is required - and we cannot offer that.
Neither can those of us across the pond offer to accompany Harrisonboy to a medical appointment-which is probably required as additional support in a very difficult time.
It's okay. I know everyone is just trying to help. Bless youball.
As a bit of a side order, have you sought any psychological help as a back up? I also wondered if you have reached out to anyone in your local faith community for support.
For years.
Steroid withdrawal syndrome? 
Exercise, PMR and Piriformis Syndrome
Carpal Tunnel Syndrome 
Myofascial Pain Syndrome
