I might have found the cause of my CFS (Eagle syndrome + IJV compression)

[borko2100]

Hey everyone.

So I had a CT angiogram few months ago and what we found was Eagle Syndrome and compression and narrowing of both internal jugular veins (IJV).

I think this is the explanation of many of head symptoms I have, such as pressure, dizziness, facial pain, etc. Now I've been wondering if this compression has been the source of my CFS all along.

As I've posted before on the forum, my condition deteriorated severely in 2017, with my CFS being mild before that. I don't know if this deterioration was because I got the Eagle syndrome on top of CFS or if it was the Eagle Syndrome all along.

Interestingly, there are some scarce reports of IJV compression mimicing CFS, there is even one study where the patient was cured after surgery to relieve the compression. There is also another study that has a theory that ME/CFS is a result of a combination of two syndromes -> IJV compression + CSF leak, you can read it below:

https://www.frontiersin.org/articles/10.3389/fneur.2023.1127702/full

I don't know how, physiologically, compressed IJV can lead to the disabling fatigue we experience, but there's a few layman theories I have:
- Because, problems with outflow of blood creates pressure in the brain, it could be that this stimulates certain parts of it to treat this as an infection and then promotes a sickness response that makes you tired
- Because the blood can not flow out properly, this indirectly reduces the inflow, so that there is less fresh blood with oxygen / glucose getting in thus creating starvation of nutrients and a fatigued / slowed down state.
- Something else... ?

Anyway I hope I can find a surgeon who can help me with this (this won't be easy seems like it so far) and hopefully I could at least get to having mild CFS again, or maybe even a cure...

PS: If you are interested in more details about the Eagle Syndrome, here is a thread I made on another site:

https://forum.livingwitheagle.org/t...ands-etc-does-this-sound-like-eagles/14236/45

 

[Faith2007]

I'm glad you have a new lead to follow for CFS, though sad that it may be difficult to treat. I always like it when testing shows something, so I'm not just chasing a ghost.

I have coagulation dysfunction, and though it doesn't account for severe fatigue, it is thought that this reduces the bloods ability to transport oxygen and nutrients, which may also happen with less blood flow.

Here's the article that discusses it, 3rd paragraph, if you are interested: https://holtorfmed.com/conditions/chronic-fatigue-syndrome/

 

[Faith2007]

But it looks like you already have discussed that.

 

[borko2100]

I'm glad you have a new lead to follow for CFS, though sad that it may be difficult to treat. I always like it when testing shows something, so I'm not just chasing a ghost.

I have coagulation dysfunction, and though it doesn't account for severe fatigue, it is thought that this reduces the bloods ability to transport oxygen and nutrients, which may also happen with less blood flow.

Here's the article that discusses it, 3rd paragraph, if you are interested: https://holtorfmed.com/conditions/chronic-fatigue-syndrome/

A recent CFS study came to the conclusion that the origin of CFS might be in the brain, so anything which somehow compromises blood flow to the brain could potentially lead to a CFS state. If your condition somehow compromises delivery of nutrients and oxygen then it would not at all be surprising if it causes fatigue.

Actually, a well understood condition - altitude sickness leads to very similar symptoms picture to CFS, one of them being fatigue. And what causes it is low oxygen getting to the brain. Speaking of altitude sickness, my symptoms are very similar.

Just look at this:

Disordered system	Symptoms
Gastrointestinal	Loss of appetite, nausea, vomiting, excessive flatulation[11]
Nervous	Fatigue or weakness, headache with or without dizziness or lightheadedness, insomnia, "pins and needles" sensation
Locomotory	Peripheral edema (swelling of hands, feet, and face)
Respiratory	Nose bleeding, shortness of breath upon exertion
Cardiovascular	Persistent rapid pulse
Other	General malaise

Barring a few of the more severe ones, I have all of those, most of them daily. I am convinced that not enough oxygen is getting to my brain, most likely due to the venous compression.

 

[Faith2007]

Speaking of altitude sickness, my symptoms are very similar.

That's a tough set of symptoms you are dealing with. But since you have mentioned altitude sickness, there is something I should tell you. I am no longer allowed to fly from the coagulation dysfunction, since my CFS doc tells me there is a risk of blood clots for me at high elevation. I had to stop flying to see her as a result.

I'm not sure if this is helpful, but I'll mention that I am tested for this with a thrombotic marker panel blood test which looks ugly if I don't take HoltraCeuticals Fibrinex, but doesn't completely take care of the problem. That has me wondering whether or not there are some blood tests that could be done to determine how your conditions are affecting you.

 

[borko2100]

That's a tough set of symptoms you are dealing with. But since you have mentioned altitude sickness, there is something I should tell you. I am no longer allowed to fly from the coagulation dysfunction, since my CFS doc tells me there is a risk of blood clots for me at high elevation. I had to stop flying to see her as a result.

I'm not sure if this is helpful, but I'll mention that I am tested for this with a thrombotic marker panel blood test which looks ugly if I don't take HoltraCeuticals Fibrinex, but doesn't completely take care of the problem. That has me wondering whether or not there are some blood tests that could be done to determine how your conditions are affecting you.

Good that you know that now in order to prevent such events. Hopefully there is some kind of treatment that can help your condition. I am not sure if it is at the root of your problems or just a coinciding condition, I'd say just keep searching. I think that we are just now beginning to realize that many conditions (like the one I have) could mimic CFS. A lot of those have been very obscure and under-researched until just 5-10 years ago.

Diagnostic accuracy of CSF leaks for example (something I might also have) increased several fold in the past decade, i.e. 10+ years ago diagnosing them was very difficult and a very big percentage got missed.

I am afraid that quite a large percentage of people with CFS might have one of those conditions that we are just now beginning to be better able to understand and diagnose.

Speaking of blood tests I think I had some similar clotting blood tests done. I don't think there exists a test that determines exactly how much oxygen is getting to the brain and if there is one it is probably very hard to find a place where they do it.

 

[Faith2007]

I don't think there exists a test that determines exactly how much oxygen is getting to the brain and if there is one it is probably very hard to find a place where they do it.

So, you got me thinking and researching. Here's what I found, for what it's worth:

A Review of Monitoring Methods for Cerebral Blood Oxygen Saturation​

There is something non-invasive here, among the invasive procedures:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8466732/

Skip to the "How can I increase my blood oxygen level?" section here:
https://my.clevelandclinic.org/health/diagnostics/22447-blood-oxygen-level

I just used my blood oxygen clip, and I'm ranging betwen 91 and 95, keeping steadier to 94 at the end of the reading, which likely is the same around my whole body. But it was interesting to read that section at clevelandclinic.org, since I do feel better outside, though I was mostly thinking of the sun when I did this. We have long winters in Montana. I also don't have a central air system, just baseboard heaters, so have to open the windows to get any kind of fresh air in.

 

[borko2100]

The NIRS spectroscopy sounds like a very promising non invasive method to measure oxygen in the brain, good find! However from what I understand this is a quite new technology. I doubt that you'd be able to find a clinic that does such a test easily, maybe in the U.S., but in other places chances are slim. A bigger problem with this tech however is this:

At present, there is still no gold standard for NIRS monitoring. Moreover, there is no consensus regarding the normal range of rSO2 values or critical thresholds for ischemia and hypoxia

Basically what they are saying is that, they have difficulty with interpreting the data that the technology provides. If they can't tell the difference between ischemia and hypoxia then this means that it is simply not accurate enough to determine more subtle hypoxia states:

- ischemia - near death / stroke
- hypoxia - pathological with clear hypoxia symptoms (dizziness, fainting, etc.)
- moderate hypoxia - CFS-like state?
- mild hypoxia - brain fog / mild fatigue / who knows?
- no hypoxia - healthy

For this technology to be useful they would need to be able to accurately differientiate between all of those states. If they can hardly differentiate between the 2 most severe states how can they differentiate the less severe ones? Seems like at the current stage this technology is just not advanced enough. Which is unfortunate, maybe in the future people with non specific / strange symptoms like fatigue and brain fog could get this test done as a quick and easy screening and be able to get some hard data and leads that something is wrong.

I think it might some day be a reality, but who knows when that will be? When will it be accurate and refined enough and more importantly accessible enough for the average patient to be able to utilize it? Medicine still has long ways to go, especially when it comes to rare illnesses like ME/CFS, etc.

Your comment about the sun is interesting. I also feel better when its sunny, some other people on the forum report the same thing. It probably has something to do with oxygenation and blood flow for sure. The infrared radiation that you get form the sun surely affects this in some positive way.