Scared, lost, and looking for help

General
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Hi everyone,

I just joined this group as of today because I finally reached my breaking point and couldn’t bare to fight this alone anymore. A brief summary of my story…

Around 1.5 years ago I started experiencing multiple symptoms and have been in chronic pain since. The pain is in the back of my head/base of skull, intense head pressures/headaches/migraines, neck pain, intense ear pair that also makes very strange noises, nose/facial pain, eye pain, occasional tongue pain, soft palate pain, and always a tight/very painful throat sensation. I’ll mention everything is left-sided. At times when it’s at its worst (like right now) I feel as if I could have a stroke at any minute. It’s like I can feel every inner working of my body. It’s too surreal. Basically just a constant pressure 24/7 with the other symptoms sometimes being off the charts in pain and other times it’s more mild and I have learned to tolerate it day to day.

I’m here because I’m trying to find the best option for dealing with this. I’ve seen many doctors and have been diagnosed with Trigeminal Neuralgia as well as Occipital Neuralgia, but I always thought I’ve had either Glossopharyngeal Neuralgia or Eagles Syndrome because of the everyday constant episodes and areas of pain. Theres even a chance I could have them all for what I know.

I’m trying to make this short…I will say I am very thankful that groups like this do exist. Since this all started I’ve felt extremely alone and have been severely depressed and developed anxiety because I just don’t know when or if it will ever end.

As of now I’ve only been approaching this condition in the most natural ways as possible (acupuncture/chiropractic care/supplements) because I’m a very health conscious person and taking medications or getting unnatural surgeries absolutely frightens me.

So I’ll wrap this up now and end it with some questions that maybe some of you could help me answer.

How do you cope with the pain?

Is surgery something you recommend?

Does anyone regret surgery?

Should I try pain medications before getting surgeries?

Has anyone had relief with injection shots?

Side effects of medications or injections?

Side effects from surgeries?

Has anyone tried natural therapies to cure/manage this?

Does anyone know certain trigger points that cause ES?

How to stop pain? What should I avoid to lessen episodes?

Any doctor referrals that live in Metro Detroit area? (Ann Arbor)

Also I am a 27 year old female, Is it even more rare for someone to have such extreme symptoms at a youngish age?

Thank you so much for reading this and I hope to hear back from some of you. Anything else that would be helpful is very appreciated. Thanks again xx

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Hi!
There’s lots of info in the Newbies Guide section, which will cover quite a few of your questions in a bit more detail, so if you have time it’s worth a read, but I’ll try to help with some of your post!
I think most people on here end up going down the medications route first to cope with the pain, but a lot of members get to the point of needing surgery. Personally, I’d definitely recommend it, but as long as you can see an experienced doctor, and they understand that they need to remove as much of the styloid and/ or calcified ligaments as possible . (There’s a couple of doctors in the Detroit area- have a look at the list of doctors familiar with ES in the Doctors Info section) A lot of members do have successful surgeries, but there have been occasionally some members who’ve not had good results. There is a risk of injury to nerves in the face and arm, so it isn’t a decision to take lightly, but when you have a rotten quality of life because of pain or vascular symptoms, it does make the decision easier!
Nerve pain medications might help if you’ve not tried them already- things like Gabapentin, Lyrica, Amitriptyline- again there’s info in the Newbies Guide. Amitriptyline helped me a lot, and also helped me sleep, as I’d not been able to because of the pain. There are side effects of medications but again, it’s a balance between getting some relief and not feeling zonked out. Other medications people have tried are lidocaine patches, and muscle relaxants like Baclofen. I found that muscle tension made symptoms worse- a bit of a chicken and egg as the pain causes you to tense up!- so I found that doing some gentle neck stretches suggested by a physiotherapist helped, and definitely helped with ny occipital neuralgia. (ES is a known cause of TN and GPN, so you can have both)
The injections into the area can help, but need to be done by an ENT. There’s a limit to how long you can have them for though, so it’s good as a short term help, but might not help long term. Some members have had help through chiropractors- but you would need to be really careful with that as they could make things worse- acupuncture and myofascial release.
As for what stops pain, that’s quite individual, depending on what sets yours off, although symptoms can often worsen with no apparent reason. I found sleeping propped up certainly helped at night, and trying to avoid turning my head (so things like sitting straight on when talking to people or watching TV etc.), plus limiting time at a desk or computer helped too.
We’ve had members of all ages here, so you’re not the youngest! Causes of ES aren’t always known, and certainly ageing and slackening of connective tissue is a cause, but neck trauma and tonsillectomy can also be causes. One of our members (Ear_Mom) is the mother of a boy who had ES, and she’s posted and written a book about his story.
Hope this helps and that others can chip in too!

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Has your doctors refered your case to a pain clinic?

U of M has several in the AnnArbor area.

I learned the through my experience that it is extremely difficult for for even the most experienced doctors to pinpoint the cause of facial pain. Eagles is one of the rarest.

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If you haven’t had a CT scan to specifically look at your styloids or stylohyoid ligaments, then you need to get one. That’s the only way to for sure diagnose whether you have ES or not.

Food for thought: Because of the number of nerves that reside in the area of the styloids & on which the styloids or calcified s-h ligaments can press, surgery often ends up being the only real “cure” for ES. When nerves are being compressed over the long-term, they can become permanently damaged. By removing the source of the compression, the nerves are able to begin recovering & ultimately, pain stops or at the very least becomes much less intense.

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Hi cheersdarlin, I feel your struggle and have been battling with the same emotions and questions since this all started for me 3 months ago!

Please hang in there and know youre not alone. I know that some days it’s feels that way and today was one of those days for me.

Like you I have tried taking conservative/natural measures to fight my symptoms but know that I will probably be heading down the surgery path soon. Struggling today with accepting this emotionally, as I feel scared and feel my life has come to a standstill because of this.

From what I have read (I have researched a lot!), it seems that surgery is the only true ‘cure’ with medication (with some strong side effects) simply managing the pain but not actually relieving the condition itself. like Jules and others have pointed out it comes to a point where the pain and side effects of medication are such that taking the next step of surgery needs to be seriously considered. I also have taken note of the strong point made by group members of finding an experniced and/or skllled surgeon.

Please feel free to private message me if you want to vent or looking for some emotional support. Know how trying this is and also hard for family/friends at times to appreciate the the extent of this condition! Take care