My symptoms don't fully align. What do you think?

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Hello all! I hope you are well.

My name is Yuyo, 34yo male and this is my story that took me to this forum.

5-4 years ago I started developing chronic fatigue. It started worse in the mornings, waking up lethargic and unrefreshed, but it would get better in a couple of hours. Drinks and parties in the evenings also became less often as I started to have less and less energy by the end of each day.
Sleep studies and other tests were done with nothing showing.

Now I am in a point when I am basically constantly tired. This includes body ache but also brain fog, which made me quit working last October, as it is very difficult for me to concentrate.

On top of that I started to have more and more headaches since around that time. They don’t respond to otc medication. Now the headache is a 24/7 which radiates mainly from the temples. I can feel the headache location “react” sometimes to postural movement, but nothing like I have seen described by people with elevated intercranial pressure.

I wanna add that mornings are still the worse. Not necessarily the most intense headache, but definitely the worse in overall symptoms like body ache, confussion, general shittiness, it is hard to describe. (I bought a wedge pillow to elevate my sleeping posture and see if that helps. Thanks @Isaiah_40_31 for the recommendation)

Because around October I was also having some neck pain I got an mri done, that showed mild cervical stenosis. My gp said not to waste my time with a spine surgeon, but I wanted to see dr Rao, who it is not only recommended in this forum for Eagles but also in other forums of chronic fatigue.

Dr Rao did some tests, and found that I had the Eagle - bilateral severe IJV compression (shown in neck mri venogram and ct venogram). He proposed surgery with dr elliot (c1 shaving+styloidectomy). i would have a venogram(catheter I assume) done to confirm

Dr Elliot disagrees with the symptoms aligning the condition, and he thinks surgery will not help, and after reading most people symptoms I understand why my symptoms are on the grey area. He referred me to a neurologist that did some testing and also agrees with dr Elliot. She didn’t even want to do a lumbar puncture. She recommended instead antidepressants, which although I was resisting at first(i had a very bad experience trying them before) I am now willing to try, as apparently they can help with pain, fatigue , anxiety and headaches.

Now I don’t know what to expect. Another doctor suggested a lumbar puncture to check for elevated intercranial pressure, but I suspect that’s not going to be an issue as per my symptoms and the neurologist assessment. Also, I found some information saying that normal intercranial pressure could be presented with outflow problems from the brain, which could still explain some of my symptoms.

I will try the antidepressants, and monitor my symptoms until I see dr Elliot again in October.

Thank you if you read this, if you have any feedback, comment, insight, I would highly appreciate it!

May all be happy, may all be as healthy as possible, may all embrace any lack of health with patience and wisdom.

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That’s a difficult one, if doctors are disagreeing with your diagnosis!
It will be interesting to see if the wedge pillow helps, as that can help with Intracranial hypertension- I would wake with headaches, which improved when I was upright, but then feelings of head and ear pressure would build again during the day when I was being more active. Other common symptoms with head pressure are dizziness, off balance feeling, feeling drunk, brain fog & fatigue, feeling like you’re falling, do you have any of those?
The vagus nerve can also be compressed with ES which can cause anxiety & tiredness…
Dr Rao I would presume as he’s very experienced wouldn’t suggest a surgery like that unless he felt it would help. I just wonder if your body is compensating to a point ( collateral veins take over some of the blood flow which helps for a while), which could be why you don’t have evidence of Intracranial Hypertension on an MRI & not all the symptoms? Obviously we can’t say for sure, collateral veins can often be seen on a CT with contrast & that’s an indicator of compressed IJVs. One of the experienced US surgeons said that the body compensates for a while & then all of a sudden it doesn’t and can’t cope, then symptoms get worse. Just a thought that this might be happening with you? Seeing as how you obviously have IJV compression that Dr Rao has seen…
I agree that it would be pointless having a lumbar puncture, as if your body is compensating for now it possibly wouldn’t show raised pressure anyway, & the procedure does have risks…
Depending which antidepressants you’ve been prescribed, at a low dose these can help with nerve pain, not sure if you have any pain in your face, jaw, teeth etc?
It would be lovely to give you definite answers, but hope this is food for thought- it sounds as though a bit of waiting might not hurt for the time being. I guess you haven’t got copies of your images at all?

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Hi Jules!
Thank you for the reply. That is a lot of food for though :folded_hands::folded_hands::folded_hands:

Brain fog + memory, word recalling: i have those, I would say cognitive issues are the worse because they made me stop working. I love my career and money is starting to be a problem

Dr Elliot noticed collaterals on my scans, he say they were working, as they had blood and he could see them. I think I read in this forum about the ‘debate’ of the meaning of collaterals, I will have a search again.

Pain, apart from my head, is distributed in the body, mainly on the top of the arms. Body aches similar to an afterworkout in random parts are present sometimes. The face feels funny sometimes at night, like the pressure from the head moves there, but nothing like other ES patients have described.

My scans are on an online platform so they are tricky to share, I can by email, I am trying to get the actual file to do the 3d rendering.

Regards
Yuyo

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I think the presence of collaterals means there’s certainly compression of the IJVs, but how long (& how well) they compensate for is the question!

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I’m also being seen by Dr Rao and waiting to hear back from the MDT with Dr Eliot but interested to hear his opinion as I am not text book. But what I have noticed is not everyone experiences IIH, Dr Fargen, one of the top surgeons for this in the US actually says that in the jugular version it is not IIH they are concerned about but jugular venous outflow and that symptoms are more commonly worse when upright and improve when lying down. I haven’t seen any other doctors talk about this but I will be raising it with Rao in my next appointment

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Hi Yuyo, thank you so much for sharing your story so openly. I’m really sorry you’re going through all this — I can relate more than you’d probably believe.

I know you’re considering antidepressants, and I just wanted to gently urge you to be cautious. Many people are never told the full picture:
• These drugs can alter brain chemistry in ways that make it very hard to stop them later.
• They’re often very difficult to taper off of, with withdrawal sometimes lasting months or years (and often misdiagnosed as a ‘relapse’).
• They can also cause long-term side effects like emotional numbness, sexual dysfunction, worsened fatigue, or even increased headaches.

I completely get wanting relief — you deserve to feel better. But please make sure you go into this fully informed. Look into places like SurvivingAntidepressants.org, or read patient stories about withdrawal and long-term effects, just so you have both sides of the equation.

Of course, it’s your decision — just wanted to share out of genuine care, because I wish someone had told me before I went down that road. If you ever want to compare notes or need more resources, I’m here. Wishing you so much healing and clarity on this tough path. :folded_hands:

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Thank you for sharing this information, @Hopefulhermit. I’ve taken a very low dose (5 mg) of an antidepressant for years for low grade depression & tried stopping it “cold turkey” in the past because the dose is so low. I was ok for a few days but definitely lapsed into my more depressed self within a week so back on I went.

I’ve been given several suggestions for weaning off of it, one of which was to use a piece of very fine sand paper to shave a little off my dose each night - starting w/ one swipe across the sand paper daily & after a couple of weeks two swipes & so on till there was nothing left to take. I think that’s a novel approach but never tried it. Another doctor suggested to take it every other day for a week or two then every three days & so on. Because my dose is so low, one of these approaches may work just fine for me (haven’t tried either yet) where it might be a more drawn out process for someone on a higher dose.

I also think that taking an anti-depressant short term may not prove to be as addictive as longer term where the body has come to fully depend on its effect over time, thus weaning off wouldn’t be as painful. I could definitely be wrong about this though.

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Thank you so much for sharing all of this. I totally get where you’re coming from — it sounds like a low dose and an easy taper, and that’s exactly what a lot of us (and even our doctors) thought too.

But unfortunately, it often doesn’t work that way. Even tiny doses of SSRIs or SNRIs can profoundly change the brain’s neurotransmitter regulation over time. Long-term use (even at “baby doses”) can still lead to adaptations — downregulating receptors, altering feedback loops, etc. So when you come off, your nervous system might struggle to regain balance, which can trigger withdrawal symptoms that often look exactly like depression or anxiety returning.

This is something the Maudsley Deprescribing Guidelines (a respected UK psychopharmacology reference) explicitly warn about: withdrawal can mimic a relapse, leading many people (and doctors) to mistakenly think they still need the medication indefinitely, when really it’s just the brain trying to re-stabilize.

Also, skipping days (like taking it every other day or every three days) is generally not recommended anymore, because it causes big fluctuations in drug levels — like mini withdrawals over and over — which can make things worse. A steadier, gradual dose reduction is much gentler.

The “sandpaper” method is creative (though hard to measure precisely). Many people instead use a pill cutter, micro scales, or liquid formulations so they can taper by tiny percentages (5–10% reductions) every few weeks or even months.

If you ever do decide to taper, you might want to check out:
• The Maudsley Deprescribing Guidelines (has clear, cautious taper protocols)
• The “Harm Reduction Guide to Coming Off Psychiatric Drugs” by Will Hall
• Peer support communities like SurvivingAntidepressants.org, full of people sharing schedules, symptoms, and coping strategies.

Wishing you so much luck with whatever you choose. :yellow_heart: And if you want, I can help find more taper resources or stories from people who’ve been through it. Just let me know.

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Thank you for your thoughtful answer, @Hopefulhermit! I have been on an SSRI for 20+ yrs. It has been beneficial & may be something I need to continue taking, but I’ve thought about trying to wean off just to see if I really still need it. So many things in our lives can put us into a depressive funk, but those mental states don’t necessarily last forever. I’ve had a couple of serious TBIs (riding a bike is dangerous for me :zany_face:) & after I was diagnosed w/ low grade depression, I read that having a TBI can predispose a person to ending up w/ depression later on. I’m very blessed because I didn’t end up w/ post concussion syndrome or serious brain damage from either of my incidents, though I do question whether or not my intermittent brain fog/mental confusion rein back to those or if it’s just old age stuff or maybe a bit of both.

I’ll definitely check out the resources you provided. :hugs:

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Thank you for sharing all of that — it really helps to see the whole picture. It makes total sense why you’d be cautious, especially with your history of TBIs and how long you’ve been on the SSRI. You’re right that our mental states can shift over time, and it’s wise to at least explore whether the medication is still necessary.

Also, brain fog can absolutely be multifactorial — past injuries, aging, even long-term med use can all play a part. I hope the resources give you some good perspective, and that whatever you decide, you feel supported and confident in it.

Sending you lots of encouragement :yellow_heart:

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Thank you, @Hopefulhermit. I love the multi-dimensional support this group provides!

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Hi Benwt,

It thanks for sharing this. I wish you all the best in your next appointments!

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This is valuable information, thank you so much, I will start reading. I tried antidepressants before for just a couple of months and I feel they made my symptoms worse. I will discuss with a mental health professional (not psychiatrist) before making a decision.

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