Hi Everyone,
Before creating this post, I tried using the search tool on “caffeine”. The results are almost entirely about avoiding caffeine.
I’ve been testing caffeine and it temporarily helped. Has anyone experienced temporary relief from Eagles symptoms, particularly headache pain and orthostatic intolerance, from a high dose of caffeine, such as 200mg? (And equally important: rebound symptoms later, worse than baseline symptoms, after 2-4 hours?)
It’s my understanding that caffeine constricts blood flow within the brain, and it makes sense that it would reduce the venous outflow pressure until the effects wear off, causing a rebound effect. (So I don’t recommend caffeine.)
I’m asking for feedback because I want to be sure that what I’m experiencing doesn’t conflict with my current Eagles syndrome diagnosis (bilateral IJV stenosis). In other words, before moving forward, I want to ensure we’re not missing a differential that this caffeine effect is pointing toward.
BTW, I’ve been through extensive neurology work up to check for migraine, and I’ve tried every available treatment to rule it out. On the other hand, the IJV stenosis at C1 is positive, I had an high opening pressure lumbar puncture, and I have extensive related collaterals—hence the Eagles diagnosis.
Thanks for reading this. Has anyone experienced a similar effect of caffeine? Any thoughts about this are appreciated, actually.
As you discovered, any discussions about caffeine haven’t mentioned it being beneficial to reducing IH symptoms possibly because of the rebound you noted when it wears off & due to it constricting blood within the brain which you also noted & which increased other symptoms. Perhaps there are members who’ve tried it & haven’t reported results. Hopefully if that’s the case someone will comment.
Typically, I think caffeine increases symptoms because it’s a stimulant, thus the reason for the negative comments you’ve read regarding caffeine usage. There have been some recent discussions about OTC supplements that seem to reduce brain fog especially for those who have had their ES/IJV decompression surgeries.
Have you had a consult w/ any of the specialists who do surgery for ES w/ IJV compression? If so, with whom have you met & what did you learn? If not, Dr. Nakaji in Scottdale, AZ, would be a good starting point as he is very experienced w/ both ES & IJV compression.
This information alone pretty well confirms that your worst symptoms are likely from your IJV compression, & if you have decompression surgery, & blood flow from your brain returns to a more normal level, your cognitive function should be restored to a pretty normal leve. It does take some months after surgery for the brain to adjust to the new level of blood flow. Positive results are usually not instantaneous.
Hi Isaiah_40_31,
Thanks for the feedback and comments, which confirm what seems to be the consensus on the forum site about caffeine, generally.
It’s been awhile since I’ve provided any input here on the forum. Here’s the reason for that: I did have a decompression surgery (styloid and C1 shave) back late 2023 on one side, but the results weren’t what I hoped for. The IJV flow didn’t improve, my symptoms haven’t improved very much, and post-surgery I now have even more collaterals than before.
And that is partially why I’m currently questioning my original Eagles diagnosis before moving forward with surgery on the other side. But there are a couple of other phenomena that I experience that I was hoping this forum can help me confirm whether they point to Eagles syndrome or not, such as orthostatic intolerance (cranial, not body) and hot weather intolerance (anything >76F).
As for which doctors I’ve been seeing: For the sake of the other members, I decided to give it some time to know the long term results before passing along information concerning my doctors, since their names would be new to everyone here, and I didn’t want to steer people in the wrong direction. I see myself as being a guinea pig as it were.
As of now, I’m still not confident about recommending them due to two factors: 1) My understanding is that they lack extensive experience with Eagles syndrome; and 2) My unfortunate results. If I go forward with having them perform surgery on the other side, I will then be able to confidently report my experience. However, let me know if you think it’s more beneficial that I discuss them now, rather than later, and I’ll do so.
Most importantly though, thank you for recommending Dr. Nakaji in AZ. I needed to hear that to open my mind. I will pull together the energy and cognition to reach out and engage with him to have him review my case.
I’m sorry that your first surgery hasn’t helped- some members have found that their IJVs don’t open up very well after surgery; it could be because there’s still some compression from the C1 process (but you had yours shaved), or soft tissues like muscles , nerves or blood vessels…It can also make a difference having the second side done, especially if it’s the more dominant IJV…
I did notice heat intolerance when I had the head pressure , I didn’t try caffeine so can’t comment on that…
What are your symptoms with the orthostatic intolerance?
I hope that you’re able to get some answers, and possibly get surgery with another doctor like Dr Nakaji…
Hi Jules,
Thanks for your message. That’s good info for me about heat intolerance you experienced.
My orthostatic symptoms: When I stay upright for too long (standing and sitting) my head pain and pressure worsen substantially. If I continue to remain upright things worsen to the point that I’m unable to think or speak in sentences, It feels as if no oxygen is reaching my brain and I’m going to faint. When I lie down, this subsides.
If I didn’t know better I’d think it was POTS with a severe headache.
However, it’s only above my neck that becomes unbearable. There’s no tachycardia. I’ve had a cardiology do a work up for POTS etc. (negative). My body can keep going, but my head cannot. The strength in my body is maintained—if not for my head, I could go for a strenuous walk or to the gym.
My angiograms, ultrasounds, etc have shown no signs of arterial issues. No signs of AVM. The carotids and vertebral were reported as normal. And my cardiology and pulmonary workups were normal.
So what I’m wondering is whether what I’m experiencing makes sense in light of a diagnosis severe IJV stenosis. I’m hoping that you might know if the phenomena I described jibes with other members.
I see your point regarding the possibility of a second surgery and venous drainage dominance. My surgery was on the left side. However it wasn’t made clear to me which side may be dominant. So I took a look at my imaging. Judging visually from my pre-surgery CT venogram, the left and right transverse sinuses were almost equal with no significant dominance that I can tell. So perhaps that should give me some hope about having the right side surgery (?) If anyone has had a similar scenario to my description, and benefitted greatly by having the second side done, I’d love to hear about that!
Your orthostatic symptoms totally align w/ severe IJV stenosis. Lying down allows the IJVs to open more fully (even when compressed) which helps relieve the IH & symptoms. Oxygen is reaching your brain but the deoxygenated blood can leave so the freshly oxygenated blood can’t enter your brain at the rate it is trying to thus, the sensation of oxygen deprivation.
We have a number of members who got minimal relief after their first surgeries & felt much better after their second one. We even have members right now in that situation who are awaiting their second surgeries.
It’s the IJVs that @Jules was considering when she mentioned a dominant & non-dominant side. Some people’s IJVs are pretty equal in size whereas others have one very large one & one that’s much more diminutive. Can you look to see if you see a difference in the sizes of your IJVs prior to your first surgery? I think it’s possible that yours are equal.
I’m glad that the other testing you’ve had done hasn’t shown other serious problems. That helps limit the cause of your symptoms more likely to your elongated styloid(s) & IJV compression.
Thanks for the mention, @Isaiah_40_31 .
Yes, I have exactly your orthostatic head/ brain fog symptoms, and a ton more, @StyloidC1x2 . At first, I thought i had a spinal csf leak (still might) and spent many months investigating that with my HA neurologist, MRIs, a blood patch, and invasive imaging (MRIs, CTMs, DSMs) at Cedars-Sinai. None found, but Dr. Schievink said they are hard to find and could still be the case for me.
In the middle of that, researching overlapping symptoms, I found my way to this site and @Isaiah_40_31 helped me discover ES on plain CTs I had back when all this suddenly started for me in May 2023.
Long(er) story short, I got a CTA/V and Cerebral Angio/Venogram at the institution where my HA Neurologist is. Radiology/Dr. reports did not really address the severity of length of my elongated styloids and pressure gradients ACROSS my head, so I got the brush off from the Neurosurgeon who ordered them.
Not to be thwarted, I got my ENT (who freaked out when I showed him my 3D photos, lol!) to give me a referral to Dr. Hepworth. I ended up sending my PLETHORA of various imaging studies to him and went for a consult/Jugular Ultrasounds where he confirmed vES, among other things.
He did my right side Styloidectomy/IJV Decompression surgery, plus right sinus surgery, in December. No C1 shave. Minimal improvements, so left side (worse compression all the way to skull base because of the way styloid angle is laying across/strangling my left, most likely dominant IJV, plus collaterals, plus epidural venous plexus engorgement in upper C spine)) is being done by Hep on August 13. Note: my right IJV is already congenitally small, so it’s struggling with the burden.
After that, we wait and see. If still issues, then Hep will advance me to docs to recheck my transverse sinus, etc. (he sees incongruent flow across), quite possibly an upright MRI to check for CCI/brainstem compression since I have military neck and almost reverse cervical kyphosis, and maybe over to Dr. Callen for more spinal leak/fistulas investigation. I’m also in the middle of SSDI appeals with an attorney iver this because, with the upright head pressures, etc., I cannot function properly in a work environment. It’s overwhelming, so one bite at a time. God keeps me sane.
Prayers for you!!!
@Isaiah_40_31 , can you please link the Dr. Fargen paper I sent you (you uploaded it to the site) for @StyloidC1x2 in this thread? The jugular discussion (without Papilloedema) in it fits me to a ‘T’. I hope this info helps!
I just want to quick chime in here to also say that “better flat” orthostatic symptoms are also indicative of SIH (Spontaneous Intracranial HYPOtension) that goes with spinal CSF leaks. I am in those groups and the things promoted all the time for LOW pressure headaches are: caffeine, salt and water because they increase CSF production. Vascular compressions can go hand in hand with blowing spinal/cranial leaks. Google “Spiky-Leaky Syndrome”. Most of the ES surgeons on the lists understand this. If you have vascular (IJVs, etc) compressions causing IIH, then your CSF fluid cannot get out as well since it’s fighting against high pressure veins (it drains through the venous system), which raises CSF pressure and can cause leaks to blow in spine and skull. The two systems are highly related. The goal is to deal with the venous compressions (high) first and see if it helps heal any possible leaking (that would create low pressure). I think of it as: if you have an over-inflated bicycle tire (venous compression), it’s going to blow air (CSF fluid) leaks to relieve itself. If you just try to keep patching the leaks without dealing with whatever is causing the over-inflated tire, it’s a dog chasing its tail. Some people find temporary relief with LPs that drain CSF, or CSF shunts if they have chronic overproduction. None of this is black and white. Each person has their own, individual causes for their symptoms.
I know for sure that I have vES, so I am dealing with that first, and it’s good that you are too.
Not totally sure if I have CSF leaks. I DO have Tarlov cysts all down my spine which indicate (to me) that I have unknowingly been in a high pressure situation for a long time, until my body just said… yo, fix this!
For me, sometimes caffeine helps and sometimes it does not. It’s a crap shoot. Good luck! @StyloidC1x2@Isaiah_40_31
As @Ladymaestro1 says, we’re all different & so symptoms vary for us! I had high pressure, but mine was helped by keeping propped up & worse when laying flat, although it would build throughout the day & be grim at times in the evening… But for others laying flat regularly can help open up the IJVs as @Isaiah_40_31 says… And we’ve had quite a few members (love the bike tyre analogy @Ladymaestro1 !), who cycle - excuse that- between high pressure, having a CSF leak, getting low pressure headaches, and then building to high pressure again.
@Isaiah_40_31
That completely makes sense now. If arterial flow isn’t flowing in a healthy manner both to and within my brain, it stands to reason that parts of it aren’t adequately oxygenated at that time. So that’s a checkmark in favor of the ES diagnosis. I think I’m going to settle on this being the cause and stop dwelling on it.
On the jugular dominance question, I’m not sure which is larger. Where the sigmoid sinus reaches C1, the caliber is almost nonexistent on both sides. I have severe stenosis. I can see that both sigmoid sinuses are close in size, and both transverse sinuses have contrast flowing to the sigmoids. But I need to ask the doctor to know about whether I had an existing jugular dominance, so I’m glad @Jules mentioned that.
Thanks for connecting me to @Ladymaestro1 !
I’ve read all of the fantastic messages I’ve received and I’m trying to respond back (and to @Jules as well). But we all know what it’s like when you can’t go as fast as you really want to, and that’s what’s reallly slowing me down at the moment…
@Ladymaestro1
Thank you for everything you mentioned. Our journeys have many similarities. For example, the beginning of my journey was a suspected CSF leak.
I’m struggling too much at the moment but I wanted to let you know that I’ve read your valuable messages and I’m just on pause at the moment.
@StyloidC1x2 I totally get you. The pain and debilitation is real and ridiculous. I too have many struggles and pauses each day. Prayers for strength, rest and peace!
