Too tired. Am I chasing another ghost?

[sparkx818]

I am 28m and have been going in never ending cycles with my health since July. I recently got married back in June and I’ve pretty much been in pain ever since. We had a wonderful trip planned to Hawaii that we had to cancel as I would always wake up with migraines that on-set suddenly. I’d have a lot of brain fog and would not remember what I did yesterday at all. Even watching TV became difficult and I’d be super confused.

The headaches would start as dull pain and then worsen with the progression day. These were left sided and mostly felt them behind my left ear. The migraines were then followed by sudden onset of my chronic friend tinnitus (not pulsatile, the high pitched ringing kind) in my left ear. The onset of tinnitus co-incidental with two things me starting sumatriptan (which gave me tightness in the neck) and my dental cleaning. And there I was, next day waking up with a strange ringing in my ear.

At that time, I was hoping that the ringing was just my migraine aura and was put on a drug called Topiramate for migraine prevention by my PCP and it all went downhill from there. I was on that drug for two weeks and I only remember those two weeks in flashes due to it worsening my cognition which was already bad. At work, I’d open a window and almost within a minute forget what I had been doing and had to start writing notes to help me through the day. I had a second dental visit for a filling during that time.

By the time I saw my neurologist for the first time, it was really insane and he put me off of it and started me on amitriptyline. The amitriptyline took a while to help and I continued to basically spend the entire month with constant daily headaches. The most bothersome thing was the constant metal on metal like screeching tinnitus in my ear, I saw an ENT doctor who said I had little to none hearing loss. Between the transition period from topiramate to amitriptyline I suddenly felt this pain at the corner of my jaw, which then vanished but I instantly knew something was up so I went back to my dentist and thought that the filling they did misaligned my jaw and could be causing that left lower jaw pain. The dentist pointed to my impacted wisdom teeth and said that he could bet his money on this guy causing the pain and other problems. Which led me to my third dental visit in the span of 1-2 months and got all my wisdom tooth removed.

I was really hoping for this to be the cause of my problems and solve them once for all but my problems persisted. I started digging in again and found that a lot of my symptoms aligned with a B12 deficiency. This led me to go back to my PCP and insist for a test, which came out as deficient (189) and I was put on shots for it. Once again, I thought that I had found the cause to all my problems but a month into it, I feel pretty much the same. During my follow up with the neurologist we did increase my dosage to 37.5mg from 25mg and I feel like that has been helping with the headaches but the dull facial pain persists.

I consistently have a very tight left SCM muscle, pain at the top of the SCM, a very tight left shoulder muscle and left sided TMJ like symptoms, left sided ear pain, tension and pain in left cheek area, I am scared of yawning as my jaw locks itself on the left side if I open it too wide. I have constant scary temple muscle twitches and twitches in the masseter muscle and pain behind my jaw on the left side. My PCP said that my symptoms are consistent with either Trigeminal neuralgia or Occipital neuralgia however I continue to question what led to this. I had no recent trauma that could’ve sudden onset this. I was however, out of state for my marriage for a few months and not being on my work desk led to a poor posture using kitchen table as my work desk and a bad pillow for sleep.

As I had run out of all the options and was ruling out things at this point, even though I don’t clench my jaw at night, I thought what the hell and decided to go back to my dentist to rule out TMJ. And that’s exactly what happened, they ruled TMJ out as they did not find any signs of grinding. After they looked at my panoramic X-ray, they did a CBCT and gave me a prognosis of eagle syndrome and told me to go see an ENT. They said both of my styloids are elongated but I could be symptomatic on the left side due to it being extra pointy. They mentioned that my flare up could have been due to the dental procedures (and I had not one not two but three of them in a short period of time)

I am scheduled to go see an ENT early next month for it out here in Utah but I guess the reason I’m here ranting about all this is that I’m just too tired of pursuing another dead end. I’ve jumped from treating condition to condition hoping I’d get relief but they were all in vain. The high pitched tinnitus is just the worst thing I wouldn’t wish on my worst enemy. My quality of life has substantially decreased and I’m scared of going into public settings because I have left sided sound sensitivity.

I can’t measure it accurately from the software they did their CBCT on but does it look worth pursing or am I chasing another ghost?

[Rosie]

Hi @sparkx818 welcome to the forum. I think you may have landed in the right place. I’m sorry you have been experiencing these awful symptoms which certainly sound like ES, to be honest you could be writing my story. I too started with debilitating daily migraines, auras, trigeminal & occipital neuralgia, ear fullness, pulsatile tinnitus together with a screeching high pitch tinnitus which is constant. We have some members who are really good at checking for vascular compression, if your CT included contrast.

[Rosie]

Just on another point, I to had impacted wisdom teeth, which I thought was causing my problems, in fact I begged the dentist to remove one of mine. Fortunately he did a panoramic xray and he convinced me that my tooth was not the problem. Is was then that I noticed the long left Styloid Process.

[sparkx818]

Hi @Rosie, while I sympathize with you, I am just happy to feel that I am not alone.
Unfortunately, the CBCT did not have a contrast as it was just done at the dentist’s office and it was just limited to oral - but I’m hoping to ask the ENT I am seeing next month to prescribe me one.

[Rosie]

Don’t worry, I know exactly what you mean. It has taken me 15 months to get to this point, being passed from one doctor to another, GP, Dentist, ENT, Neurology & Headache clinics. I actually noticed the Styloid on my pano and uploaded it here for other opinions. Its really good that your dentist picked it up, thats quite rare. You will get loads of support & advice here.

[Isaiah_40_31]

@sparkx818 - Your styloids could definitely be causing the awful symptoms you’re having. The right one is an unusual shape & very pointed, & the left one is somewhat thick & quite pointed. Headaches as bad as yours usually are the result of vascular compression being caused by the styloids or calcified stylohyoid ligaments & sometimes the greater horns of the hyoid bone. The most common scenario is the IJV(s) being squashed between the styloids & the transverse processes of C1. Another possibility is the internal/external carotid arteries being poked/irritated or getting squashed by calcified ligaments or the hyoid’s greater horns.

High pitched tinnitus can be the result of arterial compression where pulsatile/lower pitched tinnitus can be the result of venous compression (as per Dr. Amans at UCSF). Without being able to see your veins/arteries in your imaging it’s hard to say what is going on there.

You’re welcome to upload your imaging once you get your CT (please remove all personal info from images before posting them). Request that your CT be done w/ contrast, & if possible, w/ your head in any positions that cause your symptoms to get worse. We can often add information that is not in the radiology report once we see your imaging. This can be helpful in discussions with your doctor. We also can refer you to the doctor(s) we think will be most helpful for you.

[Jules]

Poor you, it does sound rough for you, & not great timing after just getting married!
I agree with the others’ ; your styloids do look elongated, & although it’s not always easy to tell for sure, they do look quite close to the C1 processes which is a common place for internal jugular vein compression. Also the IJVs can often be compressed a little lower down by muscles, we have had quite a few members who have tight SCM muscles & they can cause compression too.
I had uncomfortable (but not awful) jaw aches and ear aches on and off for years which I put down to impacted wisdom teeth, I was a bit of a wuss though & never had them removed. The jaw pain got worse & tooth ache, & when I went back about that and a salivary gland stone then the styloids were discovered in a panoramic x-ray, like yours were. The elongated styloids often cause trigeminal neuralgia, which can cause tooth aches, so we often see members who have had unnecessary dental work done, and then the pulling & tugging to remove teeth, or perhaps having your head in an awkward position while having the work done often exacerbates ES too!
So if you’re able to get a CT with contrast done, it hopefully will show if there is IJV compression, looking at your images I think it is worth pursuing this, it’s understandable that you’re weary with trying to find answers, but it’s worth pushing on to get yourself better healthwise…
It’s also worth ringing ahead to the ENT you’ve been referred to, to see if they’re knowledgeable about ES. Unfortunately many doctors aren’t, and you could be wasting your time. We do have a list of doctors familiar with ES, although not been told of any in Utah, so if it does look like you have vascular ES you may have to be prepared to travel…

[sparkx818]

Thank you @Jules @Isaiah_40_31 for your supportive comments.

I met the ENT doctor today, they were somewhat familiar with ES but for some reason they believed not all my facial pain concerns could be tied to the styloids.

They have ordered a CT of the neck with contrast anyway and prescribed me prednisone for inflammation and brain fog. I’ll post those CTs here once I get them.

Also they didn’t have a very good answer for my high pitched tinnitus, and proposed trigeminal V2, V3, periauricular, and occipital nerve blocks. Has anyone had success with those?

It was honestly a little disappointing to hear their remarks about ES not being it for me. But I’m just hanging tight until that CT.

[Isaiah_40_31]

Good attitude, @sparkx818! I’m glad you’re not putting a huge amount of confidence in what the ENT told you. We’ve found some doctors simply don’t know the scope of symptoms that ES can cause, & therefore only diagnose it when certain symptoms are present then discount other symptoms as being unrelated when they definitely are. Even radiologists have been naysayers about ES when the imaging is clearly positive for it. Sigh…

We look forward to seeing your imaging. I’m glad the ENT you saw at least referred you for that!

[Jules]

I agree with @Isaiah_40_31 , sadly there’s alot of ignorance about what symptoms ES can cause…
You can search for nerve blocks in the past discussions, some members have tried them, it doesn’t look like they’re particularly helpful as they don’t seem to last very long…

[sparkx818]

Got my CT scans back. I do not know what I am looking at. The radiologist who read it reports everything as normal.
The axial

On the right

On the left

back

[Jules]

Well, I disagree with the radiologist that everything is normal! The ‘average’ styloid process is 2.5 cms (doctors disagree on this saying anything between 1.5 cms & 4 cms, but 2.5 does seem to be the middle!), so yours are elongated. They’re also very close to the C1 processes, & on the 3D images it looks like there is IJV compression, but @TML is very good at identifying the structures on the axial views, so he might be able to confirm this- sometimes it looks like there’s compression in 3D but the axial images show a bit more space…In my not as knowledgeable opinion it looks like your left IJV is compressed between the styloid & C1 (right side in the image), but can’t see it on the right… Whether you’d need a C1 shave I don’t know, but that’s something the others might have a opinion on, & obviously the doctor if you see one will advise you.
Your neck also looks very straight , which means it’s lost it’s natural curve, that can make symptoms worse sometimes. There are exercises which can sometimes help to restore the curve, but if your body has adopted this position to give you more room in your neck to alleviate compression, then it might not make a difference, TML put forward that idea!
I do think that it’s worth you pursuing ES as a diagnosis by seeing a doctor with experience , especially one of the vascular ES doctors. (Dr Nakaji in AZ, DR Hepworth in CO, Dr Costantino in NY, or possibly Dr. Babu Welch at UT Southwestern, he’s done one surgery for a member.

[TML]

@sparkx818 see attached annotated imaging.

Both of your IJVs are compressed between your styloids and C1. I think bilateral styloidectomy could help open them up.

[Isaiah_40_31]

I agee w/ both @Jules & @TML ’s opinions about styloid elongations & bilateral IJV compression. Gotta wonder how bad things need to look before a radiologist acknowledges that something is abnormal!!

[sparkx818]

Thanks for all your support guys and special thanks @TML for helping with reading the axial view!

I plan to reach out to a couple doctors on Monday. Colorado is super close to me. I hear all doctors are super booked out since there aren’t many. Hoping I can get a consult soon.

[TML]

Make sure that whichever surgeons you meet with you clarify whether they can cut the styloids above C1. Do not let anyone just trim them. Have to be cut above C1 so the IJVs can open up

And no worries. Happy to help!

[Jules]

Most doctors have a cancellation list , so it’s worth asking to be put on that if you can go to an appointment at short notice, it’s worked for quite a few members!

[Isaiah_40_31]

Dr. Hepworth (Denver) is booking into next year, so you might want to go a little further & try Dr. Nakaji in Scottsdale, AZ.