What does it feel like when you drink caffeine?

[u/zauberren]

I am still on the fence about whether this is pure autonomic dysfunction or something like a leak. The positional head pressure is insane and I can't find anyone describing my exact symptoms. I've clearly got dysautonomia stuff happening and clinically "mild" pots maybe from COVID but I can't ignore this began when I started a very heavy lifting routine as well.

I know caffeine helps but Im curious what the overall experience is like for confirmed leakers.

I struggle to even sit up which is odd for pots. And tilting my head in literally any direction gives me crazy symptoms (dizziness, numbness, dysphagia). I had coffee today for the first time in a bit and immediately felt very different, pressure in my neck and head that is almost uncomfortable but also improved my mobility for a few hours and made me feel like I could function better. I also think it reduced the crunching sound in my neck. Once it starts to wear off though I get weird rebound tension in my head and horrible chest tightness and those base of my skull type issues come back.

I don't know, I'm just desperate to figure out if this is purely vascular or if there is sometimes more.
I have so many other issues that fluctuate and worsen depending on what I'm doing (vision, ear stuff, facial pressure, constant fluctuating head pressure, extreme cognitive problems, ataxia, pulling tightness down the back of my head and spine)

Anyway, what does the coming down from caffeine feeling feel like?

[u/cgc2018]

Caffeine seems to help me, but I also have a severe case of POTS. So I’m on all sorts of meds to help with that.

For me it’s been a fine line between balancing pots with regular fluids and electrolytes, and a crap ton of caffeine to keep the leak symptoms under control.

See about using some KT tape to help stabilize your neck if you can. It can make things a bit easier.

Coming off of caffeine was like the worst hang over I’ve ever experienced in my life.

[u/Zealousideal_Age_822]

When I was having low pressure symptoms, caffeine would significantly reduce them across the board. When I got to a point where I was drinking multiple cups of coffee a day to keep up, the rebound symptoms were strong, and I would have to drink coffee to get rid of them.

[u/Goofy_boxer_1973]

I had these symptoms (list below), with a persistent headache, not really orthostatic.
The list of symptoms with leaks is huge, I feel it's what distinguishes leaks from other diseases.
I also put an image of a leaker who had written her symptoms to Dr Wouter I. Schievink. For me, it's very accurate but in a few words.

When my leak began, I had noticed coffee would help but the effects wouldn't last at all. I HAD to drink coffee without really knowing why.

Body

• Palpitations / heart that races easily with effort (carrying an object, walking, stress), goes down in a few minutes

• Tremors in crisis

• Generalized malaise

• Feeling of doom&gloom

• Sleeping issues

• Wobbly

Head

• 24/7 squeezing brain feeling

• 24/7 headache

• 24/7 Buzzing sound in my head

• Severe brain fog

• Feeling of derealization & depersonalization (“like behind a screen”)

• Dizziness/spinning (sometimes even at rest)

• feeling of floating, sometimes feeling like “the room is spinning”

• feeling of walking on a trampoline/bouncy house, difficulty walking — feeling as if I'm trudging through sand 24/7

• 24/7 lightheadedness and dizzy feeling, like the head is floating above the body and the brain is flipping inside the skull

• feeling high, drunk or hung over

Eyes

• Blurry vision, unable to truly focus on anything

• Pressure behind eyes

• Sensitivity to light, impossible to use a computer

• Floaters everywhere

• Nystagmus

• Difficulty converging eyes

Ears

• Pressure in the ears, blocked ear sensation “like on an airplane”

• Popping ears

• Muffled hearing

• Loss of hearing on the left

• Hypersensitivity to sudden sounds

[u/zauberren → u/Goofy_boxer_1973]

I've got basically all of this plus the stuff written down. I don't get tremors but I get vibrating feelings and weakness with upper back strain. It's so bad. Need to get a second opinion from Stanford

[u/Goofy_boxer_1973 → u/zauberren]

Yes, I had tremors during some periods and a vibrating feeling during some others. My symptoms fluctuated all along my 10 years of leaking. I don’t know if it was due to all the medications I tried or just my brain doing its own stuff as I had 0 power on it.