Jugular Dysautonomia

General Research Papers
,
61

@DogLover I agree with @vdm, you might have Vagus and Carotid irritation along with Jugular Vein compression based on your symptoms. All these three run in the same Carotid Sheath so it is likely that you have irritation all of them causing these symptoms when upright. See the symtoms list from Carotid and Vagus irritation and see how it resembles yours.

image
image788Ɨ722 81 KB

Source : https://emergeortho.com/wp-content/uploads/2018/04/1-s2.0-S2468781220301399-main-2.pdf

It was also posted here in the research area by Andrea who I believe co-wrote this study.

WESTBROOK et al. (2020) - Eagleā€™s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction ā€“ Doctor info and research article

2 Likes
62

Thank you @KoolDude thatā€™s really helpful I will read that with great interest. Iā€™m sure my vagus nerve is involved as I definitely have autonomic dysfunction and Iā€™ve also wondered about the carotid and vertebral arteries as many of my symptoms fit in more with artery insufficiency and Iā€™ve spent ages studying my scans trying to look for something that would explain my discomfort, which is more central and not near the jugular. It all seemed a bit unlikely to expect the carotid sheaf to cause this much grief so to read that this is something experienced by others will be a relief.

63

@DogLover Perhaps, you can talk to @Eaglefatigue who recently went through Styloidectomy along with removal of calcified Ligament. She had similar symptoms as yours. I think it is hard to see it in the scans specially when the problem is dynamic in nature (postural trigger). With your hypermobility, the calcified ligament might be the culprit here. Every time you stand and move your head, it could be irritating (not compressing) the Carotid & Vagus nerve which might manifest as many weird symptoms. Ultimately, this will be answered once the calcified ligament is removed to see if there is a marked reduction on some of the symptoms. Blood flow is dynamic and is somewhat regulated by nerves such as the Vagus nerve which can cause arrhythmia among other symptoms.

64

Does anyone know if collaterals that form due to jugular vein compression/obstruction have anything to do with elevated levels of VEGF (vascular endothelial growth factor)? - found through blood panel.
Not sure if itā€™s completely unrelated or not.

65

@Dontgiveup VEGF is a strong promoter of neovascularization after stroke or clot blockage in a vein or artery. It is also linked to many diseases such as polyneuropathy according to this study (Raised VEGF). It also been shown in animal studies that have cauda equina syndrome(lower lumber spine nerve root compression that affects bladder & bowel function). So in theory, if we hypothesize that IJVS induces congestion on the upper cervical cord disrupting blood flow to the spine, then it is a plausible explanation of raised VEGF to revascularize. Also, if you have occult (hidden) clot in & around the compression site or the upper brain sinuses, tiny neovascularization might take place to reroute blood hence raising VEGF. So at this point it is just guess, but could be related to the lower back and pelvis pain area that you complain about and lower nerve root compression as well. I had a raised creatine kinase (CK) in my blood test. This is a marker for muscle damage so go figure, it could be that due to muscle tightness and stiffness brought on by spinal blood flow disruption, I could be losing muscle as my right side feels weak.

66

@KoolDude thanks again for providing an explanation to my questions! I was watching a recent video of someone who is going through the same sort of struggles and she mentioned her VEGF marker was elevated. Ive never heard of it before. I just put two and two together and it seemed to make sense to me. But of course Iā€™m just playing guessing games and making connections, so Iā€™m glad to hear itā€™s a plausible explanation, as it just builds a bigger picture.

If I did have a blood panel done, no doubt that marker would probably be affected due to my jugular compression. And also interesting with the lower body pain I experience too.

My muscles are constantly tight and everywhere feels stiff. Constantly tense and shaking. I can relate.

It would be good if there were studies/reports that specifically analysed the symptoms of IIH in IJV compression - like all of the really odd symptoms too with explanation of why it happens. Doctors donā€™t recognise symptoms beyond head pressure and are likely to dismiss you if you donā€™t keep it textbook. But we know it goes way beyond that and affects the whole body in different ways. Iā€™ve heard a lot of peoples wacky symptoms resolve post surgery.

67

@Dontgiveup yeah I agree with you that studies are limited and more is needed. If you remember the video I shared in your post earlier last month, the 17 yearā€™s parents was told that their daughter was suffering from fictitious disease and was ruled that it was psychogenic since they could not find anything that will cause her not to be able to walk. Only her mum persisted and finally got her 17 year old daughter to a vascular surgeon who saw the link between venous compression syndrome and her weakness on all limbs. So anything that affects blood flow has unpredictable symptoms since cascading effect goes well beyond the area affected. For example, when we stand up we know that Jugular Veins collapse (presumably to regulate ICP) and Collaterals take over but noone knows what the arteries supplying blood to the brain does in tandem with Jugular Vein closure. It is only known that when standing up your heart rate goes up in order to compensate the pull of gravity - meaning it is harder to push blood up to the brain when upright than when lying down, so increase in heart rate results in an increase in pressure to push it up - This does not change the net flow of the blood, equal amount of blood as when you were lying down is still going to the brain. This is just for compensation of postural change same as the Jugular Vein which regulates intercranial pressure by not draining too much when upright. So all these needs to be studied dynamically when a compression happens in a vessel in order to gauge what the behavior will be. So I am not surprised that it is hard to study all the affected systems.

1 Like
68

@KoolDude Yes. Very true. With all of that considered, it would be very difficult to study the affected systems. Though it would definitely provide some really important information if it was to be investigated.

I think about that video a lot, especially when I need reassurance of my own symptoms. Disgusting that they ruled her as psychogenic. And itā€™s sad that itā€™s pretty much a typical response from the healthcare system in general.

3 Likes
69

I wish Watson had been a bit more successful system than it wasā€¦

1 Like
70

@Dontgiveup Interesting that you said this (Disgusting that they ruled her as psychogenic), I can relate to that 17 year old girl as I was dismissed many times by the doctors that were supposed to care for us. When I came down with this terrible vascular ES, my personal doctor thought I was suffering from anxiety and that nothing was wrong me since all the tests came back normal. My neurologist thought I had fibromyalgia (abused syndrome and go-to diagnoses when not knowing the cause) and that everything was fine. He wrote to my personal doctor that I did not believe in him because he could not find anything wrong with me. My ENT ruled that my hearing loss is bit surprising and too early for my age and given its severity, he only thought I might have genetic non-syndromic high frequency hearing loss and he suggested hearing aid instead of looking for the cause of it. I saw a cardiologist after a sleep study found that I have mild sleep apnea and AV Block (A condition where the heart skips beats while I was sleeping) with insomnia. I told the cardiologist that I am athletic and run an 1 hour everyday and never thought I had heart issues but he diagnosed me with Type 2 AV Block Mobitz 1 ( a type of mild heart rhythm disorder). When I asked him to look for a cause and explained all of my other symptoms, he said if it gets worse, we can put in pacemaker otherwise you are fine and was no longer interested in investigating it bit further. So here I was suffering with multitude of symptoms and with no help. I had to take matters into my own hand and started connecting the dots and faced them with evidence that made thinkā€¦ummmā€¦I never thought of such thing (Vascular ES). How can it cause all these symptoms? was their answer.

So yeah, only very few doctors think outside of the box and look your case bit further. In our bodiesā€™ biology, everything is possible. The fact that you do not know the cause, does not mean a cause does not exist. Let me give you a couple of examples here, A man was stopped by the police and when they measured his alcohol level, it was higher than normal. When they asked him if he was drinking, he said no. He did not drink. At the hospital, doctors did not believe him either since his blood alcohol level was high. It only took a smart molecular biologists to think about what could be causing this. So it turned out that his gut fungus was producing ethanol (alcohol) by converting the carbs and sugar he was eating. A condition known as auto-brewery syndrome (He was acting drunk but swore he was sober. Turns out his stomach was brewing its own beer). Another case was a woman whose ovaries were from a twin sibling that was never born so as result, she was giving a birth to her sisterā€™s babies since her DNA was different than her ovaries which came from her unborn twin (Giving Birth to Your Siblingā€™s Baby: The Intriguing Condition of Chimerism | Vibrant Gene)

The reason why I am using these examples is that our bodies are complex and it is counter-intuitive to think that your gut is making you drunk but if you think about how beers are made it makes perfect sense that overgrowth of the yeast in our gut microbiome could produce alcohol just like the way we produce normally. Similarly, you can give birth to children who have DNA of non-existing sibling because you are chimeric (with 2 DNA). So you need to be outside of the box to think about a presented problem. Our doctors are thought to only look for markers and if they canā€™t find anything, they rule it psychogenic and rule out any other causes. Sorry for the long ramble but thought I could share some of my deep disappointments with established medical community.

3 Likes
71

@KoolDude i totally get it. I have been through the same thingā€¦ I was begging the doctors to run tests and figure out what was going on and they just kept trying to throw anxiety meds at me. The way Iā€™ve been treated is absolutely disgusting. Itā€™s exhausting having to fight constantly and when nobody can offer any help or reassurance, it gets to a pretty hopeless state and Iā€™ve been close to the edge a few times, only because I just want it all to stop. I just want my life back.

And Iā€™ve realised from this experience just how much anxiety is caused by the body and not just the mind. Iā€™m not an anxious person, so to suddenly become so extremely panicked out of the blue makes no sense. Anxiety is a symptom in this case. Though doctors believe everyoneā€™s a hypochondriac when tests come back ā€˜normalā€™.

And those examples you shared prove that if the doctors actually did their job and kept investigating then the true cause would eventually be revealed. Itā€™s a shame that if the the problem isnā€™t obvious and straightforward, then the patient is accused of being the problem. Then cue what feels like a lifetime of suffering.

Iā€™m sorry you went through that too. You really do end up becoming an expert (without the certificate to prove it) with the amount of research you do to educate yourself because the doctors arenā€™t of any help and most cannot be trusted. Iā€™m glad weā€™re able to connect and share information on platforms like this. And thanks for posting all of those links that have been more than helpful.

Where are you in the process of everything? Have you found a surgeon who will do surgery?
Are both your styloids and C1 a factor in your jugular compression?

I really hope youā€™re managing ok and donā€™t have to wait too long.

3 Likes
72

@Dontgiveup My Jugular Veins are unique in that I have one dominant one and fairly small one by birth. So most of the drainage is happening through the big one which is compressed by both the Styloid and C1 transverse process. I was finally referred to 2 Surgeons, one ENT surgeon and the other one is Skull base Surgeon. Apparently they team up to do the Styloidectomy. The appointment is on Feb 8th and I will find out what they intend to do and if they have any experience with Styloid removal. I heard they only did couple of Styloidectomy so far from the lady that was coordinating the appointment. I intend to have a lengthy consultation with them. I am managing ok and focus mitigation techniques.

2 Likes
73

KoolDude,

Youā€™ll be able to talk circles around the doctors youā€™re seeing on Feb 8th. I imagine your knowledge base is far greater & deeper than theirs as regards the particular problem you have. I hope they are in awe of what you know & are not so proud they wonā€™t admit ignorance where it exists in their knowledge of ES & IJV compression. Iā€™ll pray for your appt to goes well!

3 Likes
74

@KoolDude glad to hear youā€™re managing ok. I really hope youā€™re appointment goes as well as it possibly can and they know their stuff. So important that youā€™re in the right hands. And if it all works out, I hope itā€™s not a long wait for surgery.

Having your dominant jugular decompressed should be a huge relief, especially since that oneā€™s doing all of the work.

Iā€™m still awaiting to be booked for the catheter venogramā€¦ itā€™s a long wait apparently. No surprises there. Dr Axon even wrote a letter to Dr Higgins to insist on the urgency of getting me booked in, but Iā€™m not even sure thatā€™s made itā€™s way through the grapevine just yet.

3 Likes
75

Hey Doglover,
Donā€™t even start apologising to me for having a bad week. I know what bad weeks are like. No apology needed.
For me the high pressure symptoms were a headache (surprise, surprise), but not my ā€˜normal headacheā€™ it was like all over my skull. My eyes ached, my face ached, like sinuses x100. I felt pressure in my ears and they itched inside, where I couldnā€™t scratch. Having these symptoms individually was not unusual, but having them altogetherā€¦that was odd. My teeth ached, not like a sore tooth but like all of my teeth and my gums. Then came the nausea, then the vomiting. The vomiting was the final straw and the wife called the ambulance.
The low pressure had the same sort of headache with everything aching but it felt like my eyeballs were being sucked into my skull and my temples POUNDED and the back of my skull just ached. My initial explanation was ā€˜Like someone shooting a steel bolt from the back of my skull out through my eyeballā€™. Often a strong massage helps with neck tension, but massage was no benefit and even human touch hurt.

Yes, the shunt has done itā€™s job and regulated the pressures, but the flow on effectsā€¦just WOW. The initial leak was from the craniotomy, in real basic terms the broke the seal of my brain and my skull. The pressure fluctuations made the CSF squirt out, I could hear it, a bit like drinking milk thru a straw. I was told it would settle once the bone had healed, which it eventually did.

My initial diagnosis was due to a high pressure incident, but those symptoms had been building for years and nobody medical identified them until it turned into an emergency situation. The question here was were those symptoms caused by the growth or by the building of the CSF pressures. Every neuro Iā€™ve seen seems to have their own opinion on that one.

Another high pressure incident occurred when the distal end (abdominal end) of the shunt broke. This prevented any fluid escaping my skull, so the pressure built and built. My symptoms were getting worse and worse, the medicos all said ā€˜No, no. Itā€™s all fineā€¦ā€™ but I knew something was wrong. They reluctantly agreed to do a scan ā€˜just to put your mind at restā€™ they said, and then they saw it, the ventricles were HUGE, the fluid was building. The decided to test the pressures. They drilled a hole in my forehead and placed a pressure gauge within my skull. It was supposed to be in there for 24hours, within 6hrs I was violently ill, within 8hrs I was back in surgery having the entire appliance (The shunt) replaced.

I have heard of a blood patch but never had one. As the shunt is in-situ, they regulated the fluid pressure via the shunt and eventually it settled, that is to say the fluid pressures settled, not all of the other odd symptoms. I still get many ā€˜oddā€™ sensations today. What I look for now is a progression of symptoms, like I say, A headache? thatā€™s normal, even a bad one is not out of the ordinary, but if that progresses (And progresses) I need professional medical assistance. NOW!!!

Merl from the Modsupport Team

1 Like
76

I hope that the appt goes well for you, best wishes :smiley:

1 Like
77

So, back on this thread cause Iā€™m not sure where I should be asking questions.

With this muscle stiffness, weakness and shakiness, is it normal to feel tense all the time and you have to force yourself to let go? Feels like it hurts to stretch out. Every body part hurts.

How much movement should I be doing? I donā€™t want to overdo it and spend ages recovering, but being this sedentary and stuff isnā€™t good either.

Does this cause Hyperreflexia too?

78

So sorry that youā€™re feeling so stiff & weakā€¦I agree that you need to do something but not too much. Maybe have a look on YouTube for gentle stretching exercises/ rehab exercises for tendinopathy or-sorry to suggest this- chair based exercises for the elderly to start?

1 Like
79

@Dontgiveup also check your sodium and potassium levels in blood and diet. Might be too much sodium and too little potassium

1 Like
80

@Dontgiveup For me I feel muscle stiffness and tense after specially sitting long hours in front of the computer working. All my muscles feel tightened, my right side is bit worse. What I found to have worked with muscle tenseness is, wearing SOFT NECK COLLAR and Transdermal Magnesium Spray around the tense muscles such the traps and the neck muscles (Magnesium Spray is itchy so beware). The magnesium spray reduces and relaxes muscles spasms. the Soft Neck Collar keep your neck straight and I hypothesize that it helps not to further collapse the IJV thus collaterals donā€™t swell too much to cause spinal issues such as stiffness, weaknessā€¦etc.

I also find cold shower (I know you are already getting goosebumps hearing it) and Sauna heat helps as it relaxes the whole body. I usually take cold shower after the Sauna. If you need to know other benefits of cold showers, we talked about it here (Cold showers - #4 by KoolDude)

2 Likes