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Eagle Syndrome - Online Support Group

Should I tell my doctor/s I am suicidal


#1

If this is inappropriate please remove it and I apologise. It is not a cry for help. I am in desperate need of advice.

(Regarding ES, I recently had a CT and styloids were “30mm each, of normal length”. They didn’t report on the angle. So this may not be exactly about ES, but it is about an undiagnosed pain disorder that shares many of the symptoms.)

So 2 years I’ve been fighting this and every day is worse than the one before. I have reached breaking point and in the past few weeks have had some pretty rough pills to swallow. One is that I know that I can’t live with whatever is wrong with me. I just can’t. I’m 25 and every morning I wake into a nightmare. I can’t function beyond basic survival, I can’t take enjoyment in anything, my moment-to-moment existence is just engulfed in pain. I may as well be a vegetable because I will never be able to get a job or contribute anything of value. I’m not being defeatist - these are just facts I’ve tried to disprove, unsuccessfully, for a long time and have finally come to accept. My future, if I choose to keep going without an effective treatment, would be complete and unremitting misery. I’ve thought long and hard about it and I’m not prepared to go through that.

The other is that I have lost almost all hope that I can be diagnosed, let alone cured. Maybe I’m just one of those unfortunate people who have something so obscure that it can never be detected or treated effectively. I have run the gauntlet of doctors from neurologists to dentists to ENTs to pain specialists and none of them have been able to offer even the slightest clue as to what is going on.

But the other part of me, the quickly fading hopeful part, thinks that the only reason I haven’t found help is because none of the doctors I’ve seen have really made an effort to help me. I am not the typical patient who goes to the doctor and complains of ‘vague pain’ and it’s then up to the doctor to tease the relevant information out of them; I understand my pain intimately and have spent gruelling hours and days testing exactly how it works and how it can be aggravated. I think a lot of members here are probably the same. I know exactly where the primary sites of pain are and how to reliably activate them. You would think being so in tune with my condition would help doctors to bypass their usual circlings and get straight to the suspected root of the problem.

But no… every doctor I see is the same. Well, they’re not really sure what’s going on but, uh, they can give me some pills and see if that helps. Send me for an MRI. Same old, same old. Oh, the MRI came back clear. The pills aren’t working? Well, uh, we can try these other pills instead…

Now I know that these practices are useful and probably in the majority of cases are all that is needed. But my case is not the majority, I KNOW there is some structural problem that hasn’t been detected yet, and nobody is taking me seriously enough to crack their knuckles and start giving it the attention it needs if it is to ever be solved.

I’m not asking for a miracle doctor who will know what’s wrong with me in the first five minutes. All I want is a doctor who says “Ok, let’s figure this out”. I have never met such a doctor. They will allocate their 15 minutes to me and then send me out the door and cast me from their minds. I am passed around like chewed meat.

I am frustrated because I read other accounts and papers of patients with difficult to diagnose conditions and their doctors really go the extra mile for them. Scans, nerve conduction tests, diagnostic injections, just working through a list of potential problems until they hit the bullseye. Why am I so quickly lumped in the pills, pills, pills basket?

I wonder if this may be because I am not adequately getting across how severe and debilitating my pain is. I have told them in no unclear terms that it has ruined my life, that I have lost my place at uni and am withering away in bed every day, but that hasn’t had much of an impact. Maybe if I were to tell them that I am making serious preparations to end my life, they would sit up and take notice. Or - and this is my worry - they would commit me to a psych ward as an involuntary risk-to-self.

So basically I need to know how to get doctors to take me seriously. I know finding a good one can be a long road, but I am nearly broke and am not willing to become a chronic patient who spends their life looking for something that never comes.

Sorry for the depressing tone, and thanks in advance.


#2

Hi wonkly,
I am really sorry that you’re going through this, and feel for you that no doctors seem to be taking you seriously; I wish there was something I could do for you to help you.
Firstly, if you are getting to the point of feeling in a crisis or suicidal, there are organisations who can help you- they’re listed in the help section top right of the home page: Crisis/Help Line
Even if you’re not at a real crisis point, it’s still good to know that they’re there to talk to- you’re welcome to vent on here too but sometimes it’s good to talk rather than message.
To answer your question- I don’t know if it would help you to try to explain how bad you’re feeling and to mention that you’re close to suicidal- I know there have been quite a few members on here who haven’t mentioned that but have been desperate and have been referred for psychiatric treatment instead of being treated for a physical condition. I know that heidemt had a real struggle to get taken seriously, and she suggested that it seemed better to net mention the weird symptoms you can get with ES, as doctors didn’t tke you seriously then.
What support do you have from family or friends? I’m wondering if there was someone else who could come with you to help you get taken seriously? Or have you tried that? I’ve probably mentioned it before but if you haven’t tried taking info with you about how your symptoms match ES, and how the angle can be as important as the size with ES, then that is maybe worth a try. Could you get a copy of the CT and use the software mentioned on here to turn it into a 3D and have a look at it yourself?
I don’t think that there’s many doctors in Australia that seem to be treating ES so you’re at a disadvantage with that. If you’ve not tried a Skull Base surgeon / otolaryngologist then that perhaps an option, or if you’re able, you could look through some of the research papers and see if any of the authors of those are Australian and could help. (It’s something I want to do myself to see if there’s potentially any more for the doctors list, but sorry, I haven’t had the time) Is your GP/ primary care doctor at all helpful? And it’s kind of admitting defeat, but if you could get help for pain management from a specialist it might help you keep going. I’m sorry if you’ve already tried all these things. Otherwise maybe it might be worth looking at the list of ‘if not ES, what else?’ things in the ES Info section to see if there’s anything which jumps out symptom-wise which could be worth investigating, although it doesn’t help with being taken seriously…
We have had a few members on here who’ve not been able to get treatment or haven’t had success with surgery, so you’re not alone, but that’s not really helpful to you.
I’m thinking of you, and will be praying for you, Jules


#3

Dear wonkly,
I’m so sorry to hear how much you are struggling. It is so frustrating to not get answers when you know something is very wrong. Would you share your symptoms and triggers with us? It might help people connect some dots for you. It wasn’t until I started telling people on forums about my symptoms that I was directed to this great forum. I hate this for all of us! Life can be so darn hard but you’re young and I hope and pray you dont give up. There must be answers somewhere out there.
Best regards,
Terriann


#4

I’m glad you “dumped.” Even though it doesn’t bring change, it is a pressure-release valve of sorts. I think Terriann made a good point. Even though you’ve probably already listed your symptoms in another post, try re-listing symptoms & triggers so fresh eyes can see them. Jules also gave you great advice.
I’ll be praying for you as well. There must be a solution!


#5

Jules, Terriann and Isaiah (sorry I know that is only your username), thank you all for your kind words. It does help, really.

Another quite lengthy post incoming.

Jules - I have thought about calling LifeLine or seeking counselling but I don’t really see how they could help. I have gone through depression and mental health issues in the past, but I was able to overcome them by getting mentally stronger and growing as a person. But mental strength can only get me so far with this.

I have been referred to psychologists multiple times by my doctors. The couple I have been to have not helped at all, and that was when the pain was much more bearable than it is now. I am jaded but I think it is just an example of doctors passing the buck. If they convince themselves that part of the problem is psychological then they can offload some of the responsibility to make a proper diagnosis.

I don’t have anyone to take to appts unfortunately. I grew up in social services. Tried reconnecting with my mother many times. Had just dropped out of uni due to pain. Tried to explain how crippling it is and she said that there are people with worse disabilities than me (blind, paralysed etc) and that I was overreacting. Tried to explain further and she asked why I hadn’t killed myself if it was so bad. So I admitted I was seriously thinking about it. She is religious and said that if I did that I would go to hell. So we don’t really see eye to eye.

No friends really. I was in a bad environment with bad people and it took me a long time to get out. When I got accepted to university I left everything behind and moved to the city to build a better life. A month later the pain hit.

I will definitely use the 3D software, thank you! And looking at the research papers is also a good idea. I am wondering if there is a way to find doctors with special interests not just in ES but in facial pain that is coming from the neck/throat more broadly? I can’t find any ENTs that have a primary interest in how the throat can cause headaches and facial pain. Maybe a neurologist would be better but as usual, tracking them down is a nightmare all its own.

My GP is just helpful enough for me not to seek another one.

As for meds, I’ve bitten the bullet and am taking tegretol. I hate, hate, hate the idea of obscuring the pain and not curing it but I figure if anything it’s another drug to add to the ineffective list so doctors won’t jump to prescribe it me in the future. I’ve looked at ‘If not ES…’ and there are a few things that stand out and I’ve had in my mind for a while. Now I just need to find a doc who’s willing to start checking off the list with me. I think I will start telling doctors that I am having suicidal thoughts because at the very least I don’t have to keep it bottled up and hopefully it lights a fire under one of them.

Terriann and Isaiah - I am putting together a list of symptoms… making it a bit more descriptive than what I usually take to doctors as I usually explain a lot of it verbally and visually.


#6

It sounds like you are an amazing, strong person- to have come as far as you have with your difficult start in life- I take my hat off to you. Keep reminding yourself of that, even though it sounds as if you’ve been fighting for so long and are now exhausted with it… and am so sorry to read about how unhelpful your Mum is.
I hope that maybe the Tegretol might help- one of our members (Snappleofdiscord) was in terrible pain and she tried lidocaine patches which she stuck to the worst areas and found they helped a bit. I’m not very clued up on alternative therapies, but have you ever considered trying anything along those lines if medication isn’t helping (and if you have the money)- I have a relative who was in severe pain with TN and acupuncture helped her. If you’ve exhausted all other avenues…
The Ben’s friends facial pain group is very informative and supportive, so you might get some more idea to try for pain relief, or maybe suggestions of doctors if you want to try their site, here’s the link: http://www.livingwithfacialpain.org/
You can always pm me with doctors to avoid- we’re not allowed to give doctors negative reviews on the open forums… I have names of a couple of Australian docs now who members have asked me to keep off the doctors list! For such a huge country it’s so weird that there’s so few helpful ES doctors!
Please feel free to keep venting on here…


#7

Hi wonkly!

Yesterday, Painintheear posted the name of his/her surgeon w/ a good review. The surgeon is in Queensland. I don’t know Australian geography & don’t know how far Melbourne is from QLD, but here’s the surgeon’s name in case that helps you:

My Surgeons name is Dr Matthew Broadhurst. He is in Spring Hill QLD. Very talented guy.

I second Jules accolades! Good for you for rising above your circumstances! How sad for your mother to be so condemning of you! She is putting herself in God’s place by making a judgemental statement like that to you. I am so sorry!

I know you mentioned your financial resources are slim but maybe there is a way you could get in to see Dr. Broadhurst. Here’s hoping!


#8

Sorry Jules, I’ll remove the docs from my post.

I’ve tried acupuncture and myotherapy/needle point therapy, none have really helped. I did have lidocaine patches a while back and no cigar again sadly. The only thing that has given me relief has been oxycodone, for what I assume are obvious reasons! But they make me feel horrible the next day so I’m not taking them anymore…

Thanks Isaiah! I’m a couple of states away. I’ve actually just spoken with someone who went the extra mile for me and found a surgeon with an interest in ES. Hoping indeed… my CT report said my styloids were both 30mm which is “within normal limits”. But they also said the right was longer than the left?! Anyway, I thought 25mm was normal and anything over had potential for Eagles? They didn’t comment on the angle or vascular compression either.


#9

Ok… this is a pretty comprehensive list of my symptoms along with what makes them better, worse, and the tests I’ve undergone. It’s a slog, be warned. I do not take a list this long to the doctor’s office, but I also feel that every piece of info here is as important as the next. I also included some poorly rendered visual aids to mark where the pain is at its worst, but MS Paint isn’t my first language, sorry.

Symptoms (in rough order of onset)
  • Right sided headache. Where it all began. It’s unlike any headache I’d had in the past. It is thick, heavy and intensely nauseating. Almost like my skull itself is tense and aching. I guess the best way to describe it is it feels like my skull is rubbing against my brain…! T It has grown to cover pretty much the whole right side of my head and face but some primary pain sites are behind my nose and eye, my temple and the top front right of my head. I have extreme fullness in my right ear too which I think may be involved in the nausea/vertigo especially after movement but I’m not sure. This may be what a sinus headache feels like because the right side of my head feels chronically sick and lethargic. The thick feeling is always there but any kind of activity will make it worse, particularly ones that involve head movement and bending over. For example, I finished changing my bed sheets and the pain in my head, face and ear had changed from constant dull pressure to taut, tense and nauseating. Basically the entire right side of my head feels diseased and ‘not right’. At this moment I feel like I am going to faint.

  • Frequent and bone-jarring snapping and cracking in head when moving. This was also present from the start. I have trouble describing it but when I move my head, especially to the right or looking straight up, I get extreme tension on my face (especially at the front teeth and cheek) near the forehead and along the right temple and at the back of the skull. this will often be followed by a sharp SNAP that feels like my skull is breaking. Very strange and not at all pleasant. This is right side only but is hard to recreate on cue. I am not sure if this is connected to pain but I think it is because after the SNAP if I move my head it feels like the right side is wetly creaking and squeaking inside my head, roughly above my forehead and in roughly the same areas that I get a headache. I have mentioned this to doctors, physios and chiros and they have just said that it’s just the joints releasing nitrogen. I am doubtful as it feels much more violent and jarring than that.

  • Face pain. Here is a very poorly laid out picture where I shaded the areas of pain in red. As you can see the left side has areas shaded as well, I’ll get to that in a bit. (Ok doesn’t seem to be uploading for some reason)

I don’t want to make this and my ear pain separate from the headache because I feel like they are extensions of that pain. I have marked the primary areas in the attached image. It is hard to describe this pain because it does not feel like typical muscle or nerve pain. It is deep and heavy but it is also hot and tingling, especially around my cheek and mouth. At times I can’t tell if the pain is hot or cold. It is just really ‘lit up’ all the time. This is also in my right nostril. It feels like it is burning a lot of the time, and if I take a deep breath in through my nose it will spasm along with the side of my face (near the right sinus area). There is also a lot of chronic tension in my upper teeth and tingling on the roof of my mouth (both sides). If I eat hot (warm) foods this becomes very irritated!

  • Right ear pain and temple pain. Drives me nuts. It feels like there is a massive balloon deep inside my ear that is pressing on my temple. EVERY time I swallow it pops but the pressure is not relieved. Makes me feel physically sick. I am sure this is connected to the rest of my pain for two reasons. 1) I used to be able to open my ear and relieve the pressure by depressing my tongue on the right side base of my mouth and stretching it open. It is hard to describe but essentially I would push my tongue down on the inside of my right teeth, open my mouth and stretch the inside of my mouth/the back of my tonsils. This would break open the ‘seal’ in my ear and give me fleeting relief but it would seal back up within minutes. Doing this also helped relieve the pain in my face temporarily. For some reason this stopped working a few months ago. I can feel my ear being strained but it will not open up and all I get is pain at the bottom right side of my mouth and increased pain in my face and temple.

  • Right-sided throat pain. I have extreme tenderness at the right roof and back of my mouth which cause pain when I swallow. The right side of my throat is very painful when I move my head, especially to the right shoulder. When I turn my head in that direction I immediately feel straining in my right ear and my throat near the thyroid and hyoid bone. It feels like something is rubbing up against them and causing strain that I can also feel pulling on my ear canal. Turning head to the right also reliably flares the pain in my face and temple. I can feel the pain in my cheek being ‘pulled’ on as the muscles/ligaments/not sure under my jaw and around my hyoid/thyroid are being pulled on. Very strange, and if I push my fingers up into the tissues underneath my jaw and turn my head this pulling feeling goes away and I can move my head much more freely. I feel that there is some sort of dysfunction in that area that is causing pressure in my ear, displacing my hyoid bone and causing pain in the back of my mouth or nose that is radiating to my face and head. Frequently I will get lots of creaking and popping in this area and if I place my finger on my hyoid bone and turn my head I can feel it creak and pop. This does not happen on the left side.

  • Right eye visual disturbances. These only started when the pain had become severe. I had a few black spots in my vision one day which quickly increased. Now I have about 30 of them in my right field and I have noticed that they get worse when I use my throat too much (talking, for example). I have had my eyes tested more than once and they couldn’t find anything (they couldn’t even see th floaters which is apparently unusual) but I do worry that I may someday go blind

  • Right sided shoulder and occipital pain that I KNOW is connected to my throat. I have had right-sided occipital pain for as long as I can remember and a lot of crackling/gravelly sounds in the back of my head (right side only) as I move around. Bending over or craning my neck forward causes the back of my head to snap reliably. I also have a lot of pain and tension in my right shoulder, especially at the upper trapezius area that attaches to the occipital (see pic). I do not think this is due to muscle tension as I have been evaluated by a physio who said that my left trapezius is tighter than my right. In fact, when I tilt my head back and look up I can feel a lot of painful strain in this area and if I go further I get a sharp snap in the back of my neck followed by lots of crackling in the back of my head. I’ve mentioned this to doctors and they say it is just crepitus, but it is MUCH worse on the right and I feel it is connected to pain for the following reasons.

  • If I stand up straight and take a deep breath through my nose I can feel serious pain in my right throat (around thyroid/hyoid), my right shoulder and right occipital (see pic). Just these three areas, like they are all lighting up with the inhalation of my breath! Sometimes the pain will also go down my right arm. So all these areas that are in constant pain and feel sick are linked in some way.
    I have stronger evidence for this. As I mentioned before, one of the reliable ways to aggravate my pain is to turn my head toward my right shoulder. When I do this I immediately feel the right side of my throat being pulled around the hyoid muscles and hyoid bone in a very painful and nauseating way, as though things are rubbing up against my hyoid and thyroid. A lot of the time I will feel popping and creaking in those areas, none of which happens on the left side. With this same motion the areas of my face, eye and temple flare up and I can feel the inner part of my ear being pulled in a painful way. A lot of the time turning my head will make me want to collapse. Now what is curious is that when I turn my head to the right shoulder I can feel quite severe pain in my shoulder and my right occipital. Even a slightly rotated position I can feel serious pain in my right shoulder and collarbone (see pic). Now, there is some connection between my throat and this part of the shoulder. When I swallow normally I can feel mild pain in that area. If I rotate my head in this position and swallow I get serious pain in that area that goes away almost immediately. If I turn my head all the way to the right shoulder, to the point where I can feel pain in my occipital as well and then swallow the pain is so intense I nearly faint and is accompanied by a sharp pop! in the shoulder, around the scalene/ collarbone. I’m not overstating it when I say this is one of the most painful things I have ever experienced. It feels like I am being hit by lightning. Have brought this up to doctors and they say ‘hmm, interesting’ but do not investigate further.
    Also interesting is that when I turn my head to the right and feel tension in shoulder + occipital, if I keep turning my head I will feel the front of my throat ‘pop’ out on the right side and the occipital pain will be relieved. I have mentioned this to my ENT but he says it is normal for some peoples’ throats to pop. Well maybe, but when the popping is so intimately related to the pain I think it needs to be looked into further…

Things that make pain better
  • Conscious breathing through nose (more info below)
  • Eating food
  • Sleep (pain is at best in morning)

Breathing: This is odd. As I have said I can feel pain at the roof and back of my mouth. Well, I can’t be sure if this is actually the back of my mouth or the inside of my right nasal passage. One thing I have noticed is that my nasal breathing is awfully strained and congested, again mostly on the right side. It feels like there is a lot of phlegm right in the part of my nose where my tonsils are. I whistle every in and out breath. I can also feel my head tensing up when I breathe in, which can give me minor headaches and makes breathing painful. Well, I noticed last week that if I make a conscious effort to breathe fully and deeply through my nose the pain in my cheek largely disappeared. I had a few hours where I was the most pain-free I had been in years. It was glorious. I remember feeling hungry and being thrilled that I could feel something other than pain! Anyway, I noticed that although the burning in my cheek had calmed down, the fullness in my right ear was increased almost to bursting point. With every in-breath I can feel it in my ears. Now the pain is back to its old self, and it is difficult to maintain deep breathing due to the congestion. But I thought that was a curious thing to take note of.

Things that make pain worse
  • Head movement; turning to left shoulder creates head tension deep behind eye and in temple + frequent snapping sounds, turning to right shoulder causes throat pain, ear pain, face pain, and shoulder/occipital pain.

  • Tensing the back of my throat. I don’t exactly know what is going on here, but I can do a painful exercise that hits a lot of the sites of my pain. What I do is I swallow and as the swallow ends I can tense up the back of my throat by depressing my thyroid/hyoid area. When I do this I feel extreme right-sided pain around my right tonsil, my right ear, and my head. I know this probably makes no sense so sorry! But I can’t describe it any better. All I know ow is that I can stress all three areas by doing this. And my facial pain flares up violently within minutes afterwards. (I just tried it and it is now much worse than a minute ago.)

  • Talking for any extended period (severe pain at back of mouth/throat and increased visual disturbances)

  • Bending over or lowering head – immediately causes tension in temple, pain at back of mouth/nose and compresses ear canals. Washing the dishes for example, or my hair in the shower, is very painful. Tucking my chin in, for example when laying on a pillow, reading a book, using phone etc does the same thing. When I lift my head up can feel and hear my ears pop as whatever was pushing on them is relieved.

  • Flexing throat/back of mouth

  • Exercise of any kind, even walking

Things that I don’t know whether they make it better or worse but definitely do something
  • Swallowing. Every time I swallow I feel pain at the roof of my mouth/back of my throat at tonsil AND my right ear pops. Every time. This does not relieve the pressure in the ear. I also feel mild ripples of pain run up my cheek. The right side of my throat feels tight like something has gotten stuck on the way down, and occasionally the right side of my throat will snag and then pop out (I have put my finger there and I am pretty sure it is the hyoid bone popping).

  • Though eating does largely help the pain briefly I do feel sharp jabs at the back of my right tonsil area when I eat.

  • Yawning, again I can feel the pain at the back of my mouth/throat

One more note: In the last 3 months or so I am developing pain on left side as well. This includes headache, pain and spasm around the face, jaw and ear fullness/popping. There is also tonsil pain when swallowing. My left ear is sealing up and I can open it by depressing my throat. I am not sure whether these are TMJ symptoms that have arisen due to my right sided pain pulling my face out of alignment. I have a large-ish lump in my right cheek near the jaw that I think is what is twitching painfully all the time. I have had an ultrasound and they don’t know what it is.

In some ways it mirrors the right side pain (though not as severe) but in other ways I am not convinced. It comes and goes but is increasing in frequency.

It is so confusing! I have investigated the following conditions and am more lost than ever.

Doctors seen/conditions investigated

Migraine – diagnosed by neurologist, tried indomethacin, amitryptiline and occipital nerve block with no effect. I don’t think migraine explains the face and throat pain.
TMJ dysfunction – I have been told I have TMD by three doctors. One of them was a shyster who wanted me to pay $7000 for a splint. The others were well respected but the MRI he sent me for came back negative for disc derangement. He said he could feel that my joints were inflamed so I was probably grinding my teeth. But since my pain is at its best in the morning I didn’t think this made sense. Also it didn’t explain the throat pain and why my pain is made worse by turning my head and tensing my throat. The one thing that confuses me is that I know my bite is rubbish. But I think this is due to compensatory changes due to whatever is plaguing my right side. And I have been told by other doctors experienced with TMD that I DON’T have it. Argh!
Trigeminal neuralgia/glossopharyngeal neuralgia – these have been suggested to me but I don’t think I fit the criteria. My pain isn’t sharp stabs of electric-like pain and it is not made worse by touching my face/water/wind etc.

Scans I've had
  • CT of sinuses (clear)
  • MRI of brain x3 (mild cerebellar tonsillar descent, not enough to be a Chiari malformation which may have explained the headaches).
  • MRI of cervical and thoracic spine x2 (syrinx detected on c5-c7, doctors think it is just incidental)
  • MRI of face/jaw (clear)
  • MRI soft tissues of neck (clear)
  • X rays x3 on teeth (clear)
  • X ray of full spine (apparently showed some rotation at c1-c2 according to chiro, but unlikely to be causing pain)
  • CT scan of neck to check styloid length (first report said that right styloid was longer than left but both were within normal limits. I followed up to get the measurements so they sent a second report that said both styloids were 30mm. Confusing! Did not report on angle or vascular compression but I did request them to check.)

I recently had an MRI on skull base and they have called me back for further scans without telling me why, so we will see how that goes.

Whew…. I think that’s pretty much everything. So while I guess it seems like an overwhelming amount of info I think the key things I think are underlying here are the ear pain that is connected to the throat/back of mouth, the tonsil pain and the neck pain. (e- oh, and the shoulder pain when swallowing and turning head). The rest of my symptoms stem from them in some way.

If you made it this far thank you! Have a gold star.


#10

Thanks for the gold star! One back to you for posting all that!
Quite a few of your symptoms have been noticed by other members- like the being able to do thing with mouth/ throat to ease pain a bit, or make it worse, ease pressure, pop ears etc., so you’re not alone with that…
I had ear fullness/ pressure/ pressure in my head and temples especially, which was due to the jugular veins being compressed both sides- blood can get into your head if the arteries aren’t compressed, but then can’t get out so well, so the pressure gradually increases. This was worse after stress or exercise (presumably increasing the blood flow and blood pressure generally), also laying flat, and it would get worse through the day, nearly unbearable in the evenings. I don’t know if that fits in with your ear pressure- a CT with contrast would show compression of the blood vessels, but then that’s alot more radiation. If you’re having an MRI again, maybe they could do an MRA (MRAngiogram, so that they can see blood vessels and that would hopefully show if there’s some compression?)
The shoulder pain is something which alot of members have experienced- there’s a nerve, I think the accessory nerve, which goes from the skull base to the shoulder in the area the SPs are, so this can be irritated or compressed.
It’s interesting that you’ve got a few ‘minor’ problems with the C spine and skull base area- like the syrinx and the nearly Chiairi malformation. Maybe none of them individually could cause all the symptoms, but added together it’s enough to put your c-pine just a bit out of alignment and alter the SPs angle enough to cause pain? The space in that area is so cramped that even a small misalignment can cause probles- members have found sometimes that a slightly enlarged C1 process can be enough to squash structures between that and a slightly big SP. (My symptoms worsened considerable when I had other neck problems- a slipped disc C5-C6, so I wonder if that was enough to shift everything a bit, and you have the syrinx C5-C7?)
Also in the ES Info section, there’s a mention about a suggested condition by some researchers- StylohyoidComplex Syndrome’
"(SHCS was suggested by Candice C. Colby, MD; John M. Del Gaudio,MD in their paper ‘Stylohyoid Complex Syndrome- A New Diagnostic Classification’ on JAMA Network.

As well as elongated Styloid Processes and calcified Stylohyoid ligaments they also suggested that elongated hyoid bone processes could cause tension and reduced distensibility of the SHC, irritating the surrounding cervical structures with movement of the complex). "
So maybe a couple of your ‘smaller’ problems are enough to affect that whole complex? (You didn’t mention anything about whether the stylo-hyoid ligaments were calcified at all, might be worth double-checking that one, as occasionally radiographers haven’t thought that’s important enough to mention!)
Some of your pain does sound like nerve pain- I know you said that you don’t have the electric shock type pain, but type 2 TN is more contant aching, boring, burning pain. I had it and although it’s improved with surgery still have some pain. If you google Trigeminal Nerve branches, you can see where the nerves run and see if that corresponds to your pain, same with the facial nerve and occipital nerve. I also get the hot cold pain you’ve mentioned- a bit like a freezer burn is the only way I can describe it. So I wouldn’t rule that out- it still might be worth exploring that a bit more. As well as ES being a possible cause, as part of the nerve is in the neck, neck problems can also make it worse. (When my slipped disc was really painful, I had what I presume is a sort of migraine in the back of my head, over the top of my head and in the temple. I had exercises to do from a physio, which relieved alot of the accompanying tension in my neck and shoulders, and I’ve not had them since). Just a thought- have you tried Baclofen or something similar- if the muscles can relax a but more, a mught help everything a little? Also from what I’ve read on the Ben’s Friends Facial Pain site, alot of people (in the US certainly, not sure if it’s available anywhere else?) have a scan called a FIESTA MRI, and it goes into minute detail looking at the nerves and blood vessels in the skull base area. I don’t know of anyone who’s had one for ES, but if it’s available it could help to rule out or maybe find out what’s going on for you?
I know quite a few members have had problems with metabolic issues/ Vit D, magnesium levels. Have you ever had anything like that checked out? Not saying it’s a cause or cure, but it could help a little…
Sorry this is so long, I just wanted to let you know that some of the problems have been experienced before, I know not at the same level and in the same amount, but… It sounds like you’re doing everything you can to help yurself, but please don’t give up, keep pushing, and hope that maybe this doctor you’ve just found out about might be able to help :+1:


#11

It’s true that 2.5 cm is considered normal though some docs consider normal range to be 2.5-3.0 cm. I’d go w/ anything longer than 2.5 cm is elongated & as Jules said, how thick they are & the angle at which they’re growing can be more significant than length.

I read your symptoms, cause/effect, etc. essay (you are quite eloquent!) & what kept running through my mind is you have some irritated cranial nerves & vascular tissues. I’m not a doctor but so many of your symptoms have been seen w/ blood vessel or nerve compression & subsequently relieved once the styloids/other source of pressure/constriction were removed. I like Jules suggestion about looking into the Stylohyoid Complex Syndrome. I hadn’t heard of that but w/ all the crunchy sounds & popping you get in the hyoid area when you move your head in the “wrong” way, that certainly seems like a possibility. I know there are several people on this site who’ve had a bit of their hyoid bones removed at the time of their styloidectomies because the greater or lesser horns of the hyoid were too big/long.

Persevere, my dear! Always take the ES research articles w/ you (make sure to add the Stylohyoid Complex info) to your appointments & try not to let any doctor intimidate you. It’s always hard to stand up to someone who comes off as a know-it-all (cough, cough…the last doc you saw). I know you don’t want to burn your bridges before they’ve been built, but even if the next doc is adamant about his point of view, at least hand him the articles & ask that he read them & get back to you. That way you’ve left a calling card of sorts.

Here’s hoping & praying the next doctor is THE help you’ve been seeking.


#12

wonkly, I’m so sorry to hear that you’re in such pain. You’re a remarkable and courageous person to have accomplished so much in your life.

One poster recently gave the names of some doctors in Sydney who helped him, I think Jules has already put their names on the list:

I don’t know the Australian health care system, but maybe your GP could refer you even though these doctors are far away?

You are focused on diagnosis and the possibility of a permanent cure, and are skeptical of symptomatic treatment. But chronic pain can permanently alter the brain and nervous system, so leaving the pain completely untreated while you search for a diagnosis could make you worse off in the long run. If so, is it really worth it to have the symptoms in their “unadulterated” form for diagnostic purposes? You said you have suffered for two years and have become thoroughly familiar with your symptoms, so perhaps that’s enough information for the right doctor (whenever you find him/her) to figure out what is wrong with you.

Also, if you respond to the tegratol, that fact is itself a data point that could help towards a diagnosis–it means your condition is neuropathic in nature.

While you search for a diagnosis, do you have local meetup groups or support groups for people with chronic pain? I was struck by what you said about feeling like you have something so rare the doctors can’t identify it, I think many people with chronic conditions feel that way. If you can meet people in the same or a similar boat, it could help you feel less alone. And you could make friends who could accompany you to appointments, etc.

My best thoughts are with you. I am sure you will get answers about your condition. Don’t give up!


#13

I feel the same in many cases.
Look into the mirror straight into your eyes and see the fire in it, every time you feel bad and go on and go on. You need to believe in your self! Right now, in the hardest time in your life,when it seems so endless… it’s was a good way to keep me going on, to go to 100 doctors and one day you will find the reason! DONT GIVE UP


#14

That’s interesting about the chiari/syrinx connection Jules, I hadn’t thought about that. But I also feel that if I brought it up to most docs they would dismiss it out of hand =( I’m continuing to observe and record my pain though and I am becoming increasingly confident that the snapping in the back of my head is connected, if not the ultimate cause. I’ve got some footage on my phone of it happening when I tilt my head and I’ll show it to the doctors. It’s causing the pressure in my head, that’s for sure. I can’t move without feeling like my skull is going to snap.

I didn’t read your message until I got out of the hospital so I may need to go back and get an MRA on the same areas. I was feeling relatively pain-free that day and I’m terrified that it will make any problems not as obvious on the images…

I asked about Baclofen a while back but my doctor said I would need to spend a few nights in hospital while I take it. I think he meant Intrathecal therapy? Which seems excessive. I’ll have to ask about it again. He’s reluctant to give me what he calls the “black box” drugs.

I had not heard of a FIESTA MRI before, thanks! It doesn’t seem to be advertised on any major hospitals’ websites but I’ll keep looking.

As for vitamins, I do take Magnesium and Vitamin D. I don’t think they help but there’s no harm in taking them. I’ve had a few blood tests and my levels are good.

I don’t want to give the impression that I think my pain is worse than anyone else’s on here. I’m sure that isn’t the case. It’s both the pain and the possibility that I’ll never be free of it that I’m struggling with.


#15

Isaiah, I’ve had a CT scan which reported the hyoid as ‘within normal dimensions’, but I’m going to be that sort of patient and pester them to be more specific. I am also concerned that whatever is being compressed upon head movement is not being picked up in the supine position of an MRI. I know you can get scanned with limited flexion of the neck but will have to look into that further.

On your advice I will be hauling a lot more paperwork with me into the doctor’s office! I usually find that I go in to appointments with a strong “wont take no for an answer” attitude which wanes very quickly until I find myself nodding along to whatever they say. Well, no more of that! Maybe sinking this low is necessary to gain the sense of urgency needed to be a stronger advocate for myself. We will see…

Looking further into Stylohyoid Complex Syndrome now.


#16

Thank you for your support callove, it really does help.

I wouldn’t mind travelling interstate, but only if I can get a positive diagnosis for ES or some other related condition! Unfortunately I have had more trouble than I anticipated simply finding a doctor who is upfront about their experience with ES. Most will simply say they know about ES and are happy to see me but won’t talk about their hands-on experience, at least not until I book an appointment with them. A costly gamble!

You make a really good point about chronic pain becoming its own entity, and I’ve come around to agree with you. The pain clinic I went to taught me how after a while the nervous system adapts and can maintain pain networks separate from the underlying cause. While I’m not sure that’s happened to a large extent in my case - as the intensity of my pain still correlates strongly with certain activities that put strain on my head and neck - I am sure that whatever it is is getting worse, so I need to start pulling the brakes on that process in whatever ways I can. I started Tegretol a few days ago. I hope it helps. One thing I know it won’t help is the neck snapping, though.

It had never even crossed my mind to find a support group, but that’s an amazing suggestion! I can’t believe I never thought of it. Thank you.


#17

Thank you Rene. Still digging, haven’t hit bedrock just yet.

I appreciate your support and admire your ability to find strength from within. I’m not sure I’ve ever been very good at that.


#18

You will find the answer


#19

Wonkly, how are you now? Please drop by and let us know.

Seenie from ModSupport