My health has never been good, I have suspected having CFS/ME (chronic fatigue syndrome) for a very long time. I had quite a severe worsening back in 2017, I used to think it was just a permanent “crash” that many people with CFS report, but now I am starting to think might be something else.
How it started was basically after pushing myself very hard physically for a few days (chopping wood). Eventually I woke up one day with this feeling of facial pressure in the middle of my face (around the nose), ear fullness, dizziness. Over the years I’ve had new symptoms come and this is my current situation with the worst symptoms first:
Facial pressure, slight numbness feeling - not very severe but constant, fluctuates in intensity, usually worst in the afternoon. It’s always present, never goes away.
Painful hands, feeling of weakness / warmth, again it’s constant, thankfully is not a very intense feeling and fluctuates a lot, sometimes could be like 1/10 severity but others maybe a 6, usually in the evening.
Dizziness / feeling of floating head, usually it is not severe either, but it’s a daily symptom, around afternoon it can become quite prominent and I have to lay down, occasionally it gets better.
Ear fullness, again a similar pressure feeling. This symptom is not constant for me, it’s very variable, I could have it for a few months then it goes away, then comes back again, etc.
Painful upper teeth, feels like all my teeth hurt this happens from time to time.
Feeling of pressure in throat - this is what made me suspect Eagles. But the thing is this symptom can go away for months on end and then come back for a few weeks or a month and then go away again, it’s not a daily symptom like the others and it’s not very severe.
Pressure feeling back of head occasionally
General CFS-like symptoms - fatigue, sleepiness, anxiety, paresthesia’s, etc.
So what I wonder is, instead of a CFS crash, did I mess something up in my spine / neck after pushing my body hard back in 2017? Did I somehow trigger Eagles by compressing veins or something like that? I thought maybe I triggered a CSF leak (which are often triggered from exercising or accidents)? Unfortunately, unlike what you see with a typical CSF leak I don’t seem to improve very much from laying down. But I’ve read of reports of people with leaks reporting quite similar symptoms.
Finally, something very perplexing about all of this that really makes me question my sanity. It’s basically that I’ve noticed, the longer I am inactive and resting the worse I get. I’d notice how I felt at my worst when I was on vacation and on weekends, meanwhile on work days, while my symptoms would still be there, they would be much less intense and I’d simply feel better, less fatigued, etc. To summarize it in I have this feeling that stress / adrenaline helps somehow, and I have no idea why.
Welcome to our forum! The symptoms you describe regarding your face i.e. pressure, slight numbness, & teeth pain can all be related to the trigeminal nerve which is one of the nerves often irritated by elongated styloids. The spinal accessory nerve is another one & though it usually affects the SCM (sternocleidomastoid muscle), & trapezoids in the shoulders, when those are tense & not functioning properly, the muscles down the arms can be affected which could cause painful hands. We’ve had other members w/ hand pain as an ES symptom.
The dizziness/floating head feeling can be the result of vascular compression, & w/ the pressure in your ears & head, I would suspect internal jugular vein compression which can cause intracranial hypertension (high blood pressure in the brain) which in turn can lead to CSF leaks. The symptoms for this can sometimes be relieved by lying down. Try elevating your head when you sleep at night to see if that reduces the head symptoms at all. The fatigue, sleepiness, anxiety, etc. can also be the result of lack of blood flow out of your brain which would be caused by constriction in the IJV(s).
It’s possible that the vigorous wood chopping incident in 2017 ignited symptoms for a problem you already had asymptomatically. It seems elongated styloids/calcified stylohyoid ligaments can lie dormant for years until the wrong activity/acccident, etc, causes a slight change in their position & then the “fun” begins. We don’t know exactly what makes the styloids elongate/stylohyoid ligaments calcify but there are some theories.
Getting a dynamic (head in various positions not just in neutral) CT scan w/ contrast of your head & neck would help show if your styloids are elongated or your s-h ligaments are calcified, & whether or not your IJVs or internal carotid arteries are being irritated or squashed by them.
Symptoms of ES do come & go & many members have noted they get worse in the afternoon, but unlike you, most attribute that to job or life stresses. Distraction can be a good symptoms reducer i.e. when you’re busy doing a job or watching a movie/reading a book or other activities, your focus changes to the task at hand & that can take the mind off the troubling symptoms temporarily, but they will be back once life quiets down again.
Hi & welcome!
I had bilateral IJV compression and certainly the head /ear pressure & floaty feelings in your head I can relate to! It always built up during the day so by the evening was grim. I had Trigeminal nerve compression/ irritation too so had pain in my jaw & teeth, numbness & tingling in my face…Initially I had symptoms of pain, the vascular symptoms only started after I had a prolapsed disc in my neck, so I think maybe that shifted things slightly in my neck enough to compress the IJVs. So it could be that the chopping wood pulled something in your neck, or even fractured a styloid, that has happened with members before- even laughing or yawning can be enough to fracture a styloid process.
Lots of members notice symptoms come & go for no apparent reason, so that’s not unusual…
As @Isaiah_40_31 suggested, sleeping with your head raised can help with the head pressure, so worth a try.
I hope that you can get some scans done so you can work out if it is possibly ES or not…
Thanks for the elaborate reply @Isaiah_40_31, it seems like Eagle’s is a possibility indeed. I am going to make an appointment with a neurologist and bring it up, hopefully they will be able to order the tests I need.
Hey @Jules, thanks for replying. Yea I think my trigeminal nerve must be involved as well. This pressurized feeling could very well be from the veins being compressed and blood not draining.
I will try sleeping with my head raised, good idea. As I said I’ve tried laying down for prolonged time to see if it helps (because I suspect a CSF leak too), however I don’t notice much improvement. That being said I have to lay down often, due to the fatigue, dizziness, etc. Maybe I need to try the opposite.
Interestingly, a few years ago I had a long bus trip, which was around 40 hours long. Needless to say you can’t sleep in a lying position in a bus. Before the trip my symptoms and condition were really terrible, however by the time I was back I was feeling great! The best I had felt in years actually. I was quite hopeful then went to bed, woke up and all my symptoms were back. I don’t know what was it that helped me, my theory was that it was simply the stress hormones, those tend to mask symptoms and help me like I said. But maybe something being upright for so long might have helped for another reason, who knows, I need to test this again.
I talked with a neurologist and I am getting MRI’s soon, I mentioned venous compression, but he didn’t think it’s that, I will ask him again after the MRI’s.
In the meantime, I found an OPG I got from my dentist and found something that looks like a styloid, but I am no expert so I am not sure. Does it look like a styloid to you guys (where I drew the red circle)?
I had an appointment with an ENT who did not seem to be very knowledgeable on the subject. He agreed that the styloid ligaments are calcified, but said that’s not the cause of my symptoms, furthermore he seemed completely unaware of the possibility of venous compression caused by Eagle’s and even said that’s not possible. I guess I might try another ENT who knows more about Eagle’s (if I can find one) or just wait for the MRI’s and hope that my neurologist agrees to do a CT venogram.
I looked up some diagrams and I can understand why the ENT might think that venous compression is unlikely (even if he is wrong).
Based on the diagram below, it seems to me that this ligament is too far from the veins to compress them, so calcification alone seems to be insufficient to cause compression:
From the brief research I’ve done it seems to me that in order for compression to happen, the ligament needs to be moved out of position (after being calcified). Another possibility that seems likely is that the base of styloid becomes thicker / bigger and due to the close proximity to the vein compresses it, is my reasoning correct? What about in your case, was the compression more towards the base or lower where the ligament is? @Jules, @Isaiah_40_31?
Finally, I put my OPG from 2013 side by side to the one from 2018 and unsurprisingly I can’t see the styloid on the one from 2013. Either it was not calcified or it was but it is in a different position:
The styloid process and the transverse process of the C-1 vertebra are in close proximity. The internal jugular vein runs through the space between them. If the styloid is thick, excessively angled, curved or twisted, it can reduce that small space enough to cause it to come into contact w/ the IJV, sometimes continuously & sometimes only when the head is in certain positions. We have also learned that, regardless of the physical features of the styloid, the C-1 vertebra can be out of alignment just enough to close up the space between the transverse process & the styloid thus crowding the IJV & causing it to become partially to fully compressed. Typically, IJV compression does occur between the styloid process & the C-1 (&/or occasionally C-2) vertebra.
When stylohyoid ligaments are calcified, because they are further from the skull base, there is a possibility that they can cause compression of the internal carotid artery which is actually a worse problem than IJV compression as it can cause stroke-like symptoms & potentially a full blown stroke if not taken care of.
Here is an image which @Buzz from our forum posted that shows his styloid & tp of C-1 compressing the IJV
The doctor I initially saw for ES told me that the styloids couldn’t compress blood vessels too- & I had bilateral IJV compression! I didn’t have calcified stylo-hyoid ligaments, it was elongated styloids compressing them where they exited from the base of the skull. As @Isaiah_40_31 says, it depends on the thickness of the styloids & the angle they grow, not just the length.
Thanks for the explanation and example @Isaiah_40_31, I understand better now. Good that there is an Eagle’s doc in Belgium, I don’t live very far from where he is so visiting him is definitely a possibility, thanks again.
Seems like a lot of docs, even neurologists are not well schooled on IJV compression @Jules. Idiopathic Intracranial Hypertension seems to be quite common among sufferers of CFS / ME (which I think I have as well), this was even confirmed by a few small studies too. I wonder how many of those people with CFS and IIH actually have IJV compression that was causing their IIH and fatigue?
Maybe there is a spectrum, depending on the severity of compression. It could be that when the compression is minor you only get things like moderate fatigue and non specific symptoms and only when it is severe do you get the typical pressure symptoms / dizziness, etc. Just a theory, but could explain the evolution of my illness. I.e. pre 2017 I had mostly fatigue, exercise intolerance and mild neuro symptoms and then, after the incident, all those increased in severity + the new ones that popped up. Or maybe I just have CFS + something else (IJV compression possibly). In any case, just going back to my pre-2017 state even with all the fatigue and CFS symptoms, would be life changing for me.
That being said, there have been many cases of people with CFS/ME having been misdiagnosed for decades only to find that they actually have a treatable structural issue, then after being treated their CFS resolves, quite sad really. Spinal stenosis, CSF leaks, IJV compression, etc. Unfortunately, most of those conditions rarely get considered by your typical neurologist, internist, etc. Who knows what proportion of people diagnosed with CFS/ME have a treatable structural issue rather than an actual cellular / mitochondrial disease (what CFS/ME is speculated to be)? I hope the number is not very high, but it could well be.
Good thinking @borko2100! You’re correct, there aren’t many doctors schoold on IJV compression. I agree there is a spectrum of compression severity which affects the degree of symptoms a person has. I also believe that IIH has to be caused by something (thus it’s not truly idiopathic), & it seems on this forum it’s 100% been IJV compression.
IJV compression also has to be caused by something as vessels don’t just randomly collapse. On this forum we’ve seen a variety of IJV compression causes including pressure from the styloid process, or C-1, or both; pressure from a tight muscle in the neck/jaw areas; pressure from a nerve (most often the spinal accessory nerve); or pressure from scar tissue. Sometimes the compression is caused by several of the items I mentioned, & I’m sure there are others. Relieving the cause of compression most often allows the IJV to re-open & begin functioning normally again, but in some cases, the vein has been collapsed for long enough or has been damaged by the compression & is unable to remain open by itself. That’s when a stent could be considered.
I’m glad Dr. Ladner isn’t far from you. If you see him, please let us know how your appointment goes.
Yes, I agree with you- like Idiopathic Intracranial Hypertension, makes you wonder if there is a structural cause as you said about CFS, but nobody’s looked enough…
I hope that you can get some treatment
IH (intercranial hypertension) is something I have had LOTS of experience with. Initially, the medicos labelled it idiopathic, that was until they found a cause. It was explained to me that we produce around a pint (600ml) of CSF daily. If that fluid cannot drain or be absorbed by the body, an excess of fluid can develop causing IH. So, I 100% agree with @Isaiah_40_31 “…I also believe that IIH has to be caused by something…”. The cause may not be able to be clearly identified via a scan, but to simply label it as ‘idiopathic’ is false.
I have found that when it comes to IH, often if you asked 4 differing Dr’s their opinions, you are likely to get 4 different answers as to how and why it occurs. In many cases a CFS/ME diagnosis is often made as a pseudo diagnosis ie If it’s not ‘X’ and it’s not ‘Y’ then it must be CFS. There is also a condition known as ‘positional IH’. In very basic terms, when we laydown our brains can shift within the skull, this change in position can block the aqueduct (the drain) and the pressure builds. Then when we stand, the brain positioning changes and can allow for ‘some’ drainage to occur. Often scans taken don’t show an issue as the fluid has drained.
This is an issue I’ve experienced and trying to find answers can be very difficult.
Yes, well, like many of us with rare conditions, we wish we didn’t have that ‘experience’, but here we are.
IH is often identified in young infants and IIH often in the elderly, but outside of those age groups is not very common. In both of those groups IH symptoms are often physical or observable and match a set of symptoms.
I’ve found that often our symptoms don’t match the textbook explanations and because of this our experiences are minimised or discredited, mine were for many years, 2 decades in fact. I didn’t have no fancy interwebby thingy (the internet), to draw from when my neurosurgical journey started. I had to go to the university library to read up medical textbooks just to find an explanation of it all. I often think how different it may have been if I’d had others who had “…been there, done that…” giving me information vs the medicos with their jargon (and attitude).
It wasn’t until my situation turned into an emergency that investigations were undertaken. The medicos were told, repeatedly. But I was wrong. It was given other names like psychosomatic and idiopathic in nature. They even locked me up in a psych ward because ‘You just can’t be in THAT much pain…We can’t find anything wrong…’ until they did.
Sharing our lived experiences costs nothing and is worth 100 textbooks. If I can help just one person not to take the route I did, it’ll be worth it.
I’m so sorry for your long journey to diagnosis & for the pitfalls along the way, Merl. I applaud your resourcefulness in reading medical texts at the library to help you figure out what was going on. I don’t think I’d have thought to do that but my symptoms have not likely been as grave as yours.
You’re so right about the internet providing ready resources we didn’t have as conveniently 20+ yrs ago. Access to published, peer-reviewed, research papers has also increased, as well as the number of papers available, & these have been tremendously helpful for many people.
@borko2100 I think this is true. You might want to read the following recent (2023) study by Dr. Higgins, et al. CFS/ME, CSF leak, and IJV compression are connected. The following study shed light on this.
Life changing response to successive surgical interventions on cranial venous outflow: A case report on chronic fatigue syndrome
1Department of Radiology, Addenbrooke’s Hospital, Cambridge, United Kingdom
2Skull Base Unit, Addenbrooke’s Hospital, Cambridge, United Kingdom
3Department of Medicine, University of Cambridge, Cambridge, United Kingdom
4Deparment of Infectious Diseases, Addenbrooke’s Hospital, Cambridge, United Kingdom
Recognition of similarities between chronic fatigue syndrome and idiopathic intracranial hypertension (IIH) has raised suggestions that they might be connected, with chronic fatigue syndrome representing a mild version of IIH, sharing many of its symptoms, but without the signature features of elevated intracranial pressure that characterize the complete syndrome. A further development of this idea factors in the effects of a cerebrospinal fluid leak, a known complication of IIH, to explain cases where symptoms seem out of proportion to the apparent physiological disturbance. Cranial venous outflow obstruction has been proposed as the pathological substrate. We describe a patient with multiple symptoms, including headache and disabling fatigue, in which this model guided investigation and treatment. Specifically, CT and catheter venography identified focal narrowings of both jugular and the left brachiocephalic veins. Treatment of brachiocephalic obstruction was not feasible. However, in separate surgical procedures, relief of jugular venous obstruction produced incremental and significant clinical improvements which have proven durable over the length of follow-up. We suggest that investigating chronic fatigue syndrome under this model might not only bring benefit to individual patients but also will provide new insights into IIH and its relationship with spontaneous intracranial hypotension.