Hi Everyone. Thank you for adding me to the forum. I’m happy to have found this community, and I’ve been reading a lot of your stories and insight. I want to share my story and document my process like many others I’ve been seeing here. I have at least an interesting journey so far, I have a fairly positive attitude, though it would be nice to have fewer symptoms. I just received my CT scan results confirming eagles, but I have yet to see my neuro or ENT. I’ll see my neuro Thursday and my ENT the following Monday. I’m a 38-year-old woman living in Florida. This is my story:
-Episodes of fainting, vertigo, or dizziness, exacerbated by pregnancy, but the dizzy spells started in my teens and have progressively gotten worse - I noticed about a year or two ago that when I squat or stand up too fast, my heart rate shoots up anywhere from 30-60 BPM from whatever it was
-Consistently lower blood pressure than the average human
-Anxiety, ADHD Inattentive Type, and episodes of panic disorder - specifically waking up in a panic for absolutely no reason also all since my teens - could be completely unrelated
-Severe IBS-D for a decade at least with no findings
-A strange lumpy feeling in my throat on and off for eight years at first it felt like something was hard or lodged in my voice box
-About five years ago started strange eye issues that I suspect are actually nerve-related? My eyes randomly flare up and swell for anywhere from a week to a month, either concurrent with or immediately followed by pressure feeling in my eyes and nerve pain in my face - tingling, burning, zapping, aching, numbness in my cheekbone/sinus region. I’ve seen multiple doctors for this and the first time, they thought it was shingles, the second, they told me dry eye.
The third eye swell in the past April is where it gets fun - the doctor says allergies. I knew I didn’t have any seasonal allergies but said, great! Let’s do some tests and take some medicine! Seemed and easy fix and a logical answer, you can gain allergies later.
-I take allergy medicine and use Flonase. The allergy medicine makes me feel worse, I take some Benadryl on top of the allergy medicine and the Flonase my doctor suggested and I feel like my eyes are going to completely explode out of my head. It’s the worst facial pain I’ve ever had and I begin to see lights, and colors and this lasts for hours. I don’t really understand why this happened, Maybe something vascular from the histamines? But this is where my symptoms get wild and have kind of stayed in a strange state of pain and visual, olfactory, and auditory disturbances. Test results come back, with no allergies.
-Since this incident, I continued to have facial nerve pain on and off for months and consistent Visual Snow Syndrome that does not go away. At first, my visual snow was intense - I had trails, after images, mild alice in Wonderland syndrome - now my visual snow is slightly more manageable but can have flares of being more intense. Eye pressure and pain continue. During this time I also began to have olfactory hallucinations in the form of smelling smoke and and hypnogogic hallucinations. The hypnogogic hallucinations have stopped, but the olfactory hallucinations have continued on and off sometimes for days.
-The fainting or what I’ve now been told is vasovagal syncope continues to intensify. I’ve only completely passed out and fainted one other time while pregnant when I hit the floor. About three months ago I woke up for my morning walk squatted down to get something out of a drawer came back up completely lost my vision and control of my left arm and hunched over the counter or I probably would have fallen to the floor.
-MRI of my brain findings show mild white matter lesions in my brain consistent with damage from migraines, stroke, or cerebrovascular ischemic disease. My original neurologist tells me that’s nothing to be concerned with and that I’m probably autistic and undiagnosed and this is all just sensory processing disorder. Autism does run in my family quite heavily and I’m female so I consider this.
-My ophthalmologist sees nothing and agrees it must be some kind of sensory processing disorder. Mentions my autistic son and ADHD daughter and says he sees this in a lot of his kids’ parents. Their practice specializes in assisting with visual processing disorders for kids. He specifically says that my brain is taking in too much input.
-Random severe throat pain begins and gradually spread to my ear. It’s mostly sore by the ear and where my neck meets under my jaw feel nerve pain-ish. Trouble swallowing and feel like things are getting caught in my throat frequently.
-In the next round of MRIs found a suspicious but small thyroid nodule and some herniated discs.
-I see a ENT and his main concern is the nodule. He checks my ears, looks in my throat, in my sinuses, and palpates my neck, and finds nothing. I mention the hard feeling around my hyoid and he said it feels slightly inflamed. I tell him about the sore throat and ear pain and he says we’ll check further after the thyroid is ruled out.
-Thyroid biopsy is normal. Best Arnold voice It’s not a tumah
-I begin taking Concerta for ADHD because I have a “sensory processing issue” where my brain is taking in too much input. My psychiatrist recommends taking fish oil along with it, and my symptoms seem to improve somewhat. Again, this is telling me vascular - but I’m not positive.
-I switch neurologists and see one who is also board certified in psychiatry - though he can’t diagnose mental illness. He does a vEEG for three days- I should see what that says this Thursday.
-I follow up with my ENT after the thyroid biopsy. He discusses my sore throat and ear pain with me more and sticks his finger into the back of my throat and pokes around in my tonsils and pain intensifies. He mentions the possibility of calcification around my hyoid bone, potentially pressing on my carotid artery, and sends me for a CT with contrast.
-My CT confirmed an enlarged diameter and length styloid process extending to the hyoid bone consistent with eagles syndrome.
Here we are present day. I’ve been in a weird mix of relief that something has been found and it’s not cancer or something worse and feeling very overwhelmed by what happens next, especially doctors in my area. @Isaiah_40_31 reached out when he let me into the group and I know what I need to ask for and was super kind and knowledgable. It’s been a rough journey of advocating for myself with doctors so far but I feel like finding this group has already been an awesome discovery. Thank you all for letting me share and sharing your stories and knowledge.
I’ll update everyone on Thursday with my current neurologists vEEG results and recommendation after I share eagles with him.
Hi & welcome to the group!
Sounds like you’ve had quite a journey to get diagnosed, but certainly lots of your symptoms could be due to ES, a bit complicated with your sensory processing issues…lots of members have migraines, eye issues, neuralgia in the face & ears, anxiety & bowel disorders from vagus nerve irritation & the fainting could well be carotid compression…have you had a chance to look at the common symptoms & possible explanations section in the Newbies Guide?
Did @Isaiah_40_31 suggest the Doctors list if you need to see someone with more ES experience (if your ENT doesn’t treat ES that is…) Look forward to hearing what your neurologist says, although many doctors are quite dismissive of ES, so don’t be too disheartened if he’s not very open to your diagnosis & symptoms!
Hi Jules! Thanks for the welcome and the reply. I have been reading everything as I can, and @Isaiah_40_31 did point me in the direction of the doctor’s list and give me some really good things to bring to my doctor for the next steps. I continue digging in as I get downtime and am grateful to have found my way here. I also checked out the Newbies Section and will continue searching and reading.
My original neurologist was very dismissive, and though autism may be a slight possibility, it’s not what was going on.
My current neurologist did not just dismiss me as having “sensory processing issues” and said I was unlikely to be autistic. Still, since they are neurologists, he can’t make that call and offered to refer me to a psychiatrist. I declined because it’s not a medical issue, if it is even an issue, and I have real medical issues that need dealing with first. He seemed to want to rule out as many neurological possibilities for my senses to be going bonkers as they are, and I think the vEEG will show at least one vascular fainting episode, so I plan to go in with my new CT scan, which confirms it.
My ENT seemed vaguely knowledgeable about Eagles, though he didn’t call it that. He seems willing to at least help put the research in.
I’m hoping beyond hope the team I have currently can help me or at least point me in the right direction. The only surgeons for this in my area either only do microvascular decompression or the intraoral method. So we’ll see what happens on Thursday and the following Monday. I’m prepared that it may go no where, but I’m holding on to hope that these docs will help.
Because of the number of cranial nerves which can be affected by ES, there are a vast number of symptoms that can show up which all seem unrelated. I could see w/ your family history how your symptoms could be diagnosed as a sensory processing issue, but it’s possible that you don’t have that problem because of the multitude of possible symptoms ES causes.
There is a series of videos on YouTube called Two Minute Neuroscience. There is one two minute video for each of the cranial nerves. If you’d like to further educate yourself (& maybe your doctors) you could spend 10-15 min. & watch those. The nerves we know can be affected are the facial, trigeminal, spinal accessory, glossopharyngeal, hypoglossal, & vagus nerves. We suspect the vestibulocochlear may also be a victim. Here is the link to the facial nerve video: https://www.youtube.com/watch?v=cWGf2tz0D90
Thank you so much! I will watch these. I have a vague understanding and distant schooling in A&P but I definitely need to brush up.
I can see how sensory processing and autism would be a viable option. But it also felt really dismissive of what was going on so I switched and I’m happier.
I did read Jules post too! You guys are a wealth of information and I’ll probably review everything and go through everyone’s posts a few times.
This is so very similar to my experience. Thanks for sharing this. I’m new here and these stories are really helping to affirm what I’ve been going through. Good luck.
I just wanted to let you know that I can so greatly empathize with what you have been through and relate to your story. I am autistic, and I am absolutely not going to dispute that diagnosis because it is familial and makes complete sense in my case, but I do feel that a lot of my neurological issues to include vision, hearing, and other likely cranial nerve related issues were written off as sensory processing issues due to my autism for years. Additionally, what might be vascular involvement was ignored because of neuropathy/other issues I was already diagnosed with. When I started fainting, I was taken seriously. I’m so glad you are getting answers and hope that you get relief soon.
Autism runs in my family, too. It’s not out of the question, but I also know it wasn’t the root of all these new symptoms. I’m glad you’re being taken seriously now!
Hi ectocake…I hate to say welcome to the club, but just know you are in the right place. There’s enormous amount of support and knowledge here, I know getting pointed to the right doctor changed everything for me.
I was wondering if you’ve been evaluated for POTS? your vertigo and heart rate issues when standing and the low blood pressure. It’s pretty common for POTS to be present as well as Eagles, you might look into it (also might look into Ehler’s Danlos syndrome…the three together are some kind of trifecta). Some of my problems were actually POTS-related, and have gotten better with treatment, but I definitely still have the jugular compression symptoms. Having my surgery with Dr. Hepworth in december, I hope you find the right doctor - don’t be discouraged if they are dismissive and even rude. Just keep fighting for your health - and the folks here can really help pointing you in the right direction.
I went to my primary care to circle them back in on Eagles, and when I asked about a dynamic CT scan and described the fainting and heart rate symptoms, she did suggest POTs, so her referral for me to the cardiologist does indicate that’s what she feels. I’ve wondered about POTs as a potential reason, but many of my symptoms come and go. Stimulant medication and fish oil have made my fainting spells rare, so I’m thankful. The cardiologist my primary referred is not highly rated, so I’m a little worried, but I will give them a shot whenever they call me to schedule.
Are you traveling to Doctor Hepworth? Good luck with everything! I will be following your story.
One of the things that has helped me the most are electrolytes - it keeps your blood pressure up so that it doesn’t drop when you change positions. It has made a HUGE difference, I feel so much better. I drink probably 2-3 liquid IVs a day, it’s a fine line because if I drink too much I’m all puffy lol. It’s something simple to try, you might give it a shot
I started adding Gatorade, but I’m unsure how good they are for me. I’ve never tried liquid IV, but I’ll try! Thanks for the tip! Since the potential of POTs, I read a little about it and upped my salt intake. I drink a cup of bone broth every morning, too; I can’t remember when I started that. My POT-like symptoms have been better lately. I had multiple near-fainting episodes daily, with a few complete faints a month. Now, if I have on near faint a week, I’m doing okay. I even managed to run the other day without much dizziness after.
It’s funny you mentioned puffiness. I’ve gotten that when being out in the heat or intense exercise. Is that a POTs thing?
Hi, I’m new here too…just wanted to say that I think this is what makes eagles so difficult to explain and to talk about, because the symptoms are all so varied, unexpected and random. I’m wondering after I finally have surgery (if ever…) how many things will change that haven’t been connected to my eagles syndrome.
Good luck
A lot will change when I slept on my stomach in 2012 for 2-3 hours, apparently my atlas moved back a little. For 5 days I felt like a different person, cheerful, full of energy. The main thing is that you have not yet formed blood clots in the transverse sinuses, otherwise you will not feel any improvement after the operation (the risk of thrombosis / arteriosclerosis is increased in people with thick blood, poor metabolism, both acquired and at the genetic level, obesity, and a sedentary lifestyle). Since the risks are higher in people with compression and congenital hypoplasia of the vertebral arteries, especially such people, you need to maintain your health to avoid thrombosis.
To do this, you need to monitor your diet and exercise. I am also waiting for surgery, and yes, it is really difficult to prove compression of the IJV; many doctors do not consider this a problem. You need to fight and not give up.
Hi and welcome, too! I’m not sure what symptoms are connected. I feel like the throat and neck pain is definite. I hope the visual snow and fainting are connected - the rest I can live with, but it’ll be great if they’re gone. Good luck on your journey as well!
I try to stay relatively active and eat pretty healthy overall. I’m hoping, at this point, nothing too serious has happened, but I plan to post my MRI of my brain here for everyone to look at with me.
It’s funny because they sent me for a sonogram to make sure there was no calcification of my carotid artery, and the sonographer could see it and showed me where my veins and arteries and she said, “Wow, they’re right there,” and could see my styloid bone going across.
I don’t know if the puffiness is POTS or not - it just happens to me when I overdo it on the electrolytes and retain an ton of water lol… The one thing about gatorade is just the amount of sugar that’s in it. They also make electrolyte capsules for people with pots - it’s a little cheaper than the liquid IVs, they start to add up price wise. Sounds like you are getting the pots under control - the thing that’s hard for me is that the it all depends on heat/exercise level/diet…i just play it by ear, if i feel bad I drink something. It’s also hard to tell because I still have the jugular compression that makes me sick, dizzy, and faint. However, I’ve gotten to where I can tell the difference, because the compression also causes my eyes to start watering and I can start to feel my pulse in my face - and I’ll inevitably start to get fluid my ear from the CSF leak starting back up.
Funny thing, I just started a new job a couple of months ago, and during our orientation we took a tour of the labs and literally stood there for nearly 30 minutes while this guy just went on and on…I was sure I was about to pass out. Luckily I found a wall to lean against…I really thought I was going to just slide down to the floor which would have been pretty embarrassing my first day lol. After that I told my boss that I had a condition where I couldn’t stand for long periods of time, and in the future I probably need to be able to take a seat in situations like that.
Speaking from experience as an ex-long distance runner, I hd to start wearing compression socks when running or hiking anything over a couple of miles because my feet & ankles would swell so much afterward if I didn’t.
I think it’s a combination of the stress on your body caused by running & electrolyte imbalance (which for me would happen in spite of carrying & drinking a well balanced electrolyte fluid w/ me). The body naturally retains fluid after a hard workout of any kind in order to repair muscles & soft tissues stressed by the workout. For me that puffiness would always last a couple of days after a long run/walk/hike. I also get puffy if I consume too much salt & many electrolyte replacement drinks contain only salt & none of the other minerals I mention below.
In spite of its huge advertising campaign, Gatorade is not a great electrolyte replacement drink. A well balanced electrolyte replacement should contain sodium, potassium, magnesium & possibly calcium in it. Unfortunately the rare few that do have all those are very expensive. I like liquid IV but it does have a fair amount of suga
Super sensitive to light right now; apologies for abbreviated contribution: I also have orthostatic intolerance/POTS. Hands down the best electrolytes I’ve tried = LMNT. Balanced with > sodium than most other electrolyte brands (+ potassium + magnesium) and no sugar. No inexpensive but worth it if financially feasible.
Don’t know how/when/if I’ll be able to catch up on missed posts.
