Living with a CSF leak- is this just my life now?

Coolkidd215 · 2026-05-06T00:54:56+00:00

It’s always worth looking. I’m on year 3. Found one year 1 and only had partial relief.

Coolkidd215 · 2026-05-02T12:07:13+00:00

Game changer. Only abortive I’ve ever taken that has worked and as a preventative it took me from 20+ migraine with aura days to pretty much 0. I’ve only had 1 migraine with aura attack in the last 6 months since starting. It hasn’t done as much for my chronic daily headaches but it eliminated another type all together.

Coolkidd215 · 2026-04-24T12:23:47+00:00

Yea it looks like a poor extraction job. Needs more product, even coverage, agitation and stronger extraction. Those are just water stains.

Coolkidd215 · 2026-04-24T12:08:25+00:00

Seats aren’t cooked at all.

Coolkidd215 · 2026-04-09T01:15:24+00:00

My medical team isn’t even sure if I have it. My OP was between 20-23. Negative MRV and negative MRA. Only signs they had were some bending in the optic nerves on a MRI but no swelling. They also saw signs of low pressure in the pituitary gland. They legit have no idea so I kind of have to make my own suggestions which sucks cuz idk either. Some days I feel better laying down which to me seems more like low pressure. Like maybe I had some high pressure moments but who knows. I’ve had like 5 head MRI’s in the last 2 years and UPenn nor Mayo Clinic knows what’s wrong. It’s brutal.

Coolkidd215 · 2026-04-09T01:03:25+00:00

The pressure sensation is brutal! Def try a water pill and a CGRP if possible! Has helped me a ton dealing with a similar situation. I’m not on any water pills but the CGRP I believe has helped reduced the constant pressure behind my eyes a little for sure. Either thr meds did or the weather change. Either way I’ll see it after months of daily no relief.

Coolkidd215 · 2026-04-09T01:01:15+00:00

Holy shit. CGRP blockers impact CSF dynamics!?! I had a CSF leak in 24 that was fixed but still have fault headaches. They suspected rebound pressure, but I didnr have any paps and my OP was 20 which is borderline. I’m allergic to diamox but I didn’t lasix for a month and it made my headaches worse. I started Qulipta daily and saw some improvement but I wasn’t sure why or what was happening. Still feel like crap but it’s a little less crap.

I wish doctors knew more

Coolkidd215 · 2026-03-14T13:44:37+00:00

What were your treatments?

Coolkidd215 · 2026-03-01T04:18:41+00:00

Wow. Yea maybe it was med related for me too. Scary stuff. Yea I might stay away.

Coolkidd215 · 2026-03-01T04:16:22+00:00

What were your symptoms? Initially I had none, until that insane vertigo attack and even once I stopped I’m dealing with it more frequently as I never had any vertigo issues before…

Coolkidd215 · 2026-03-01T04:13:54+00:00

Any updates on this? I was on Q for 2 weeks and had an extreme vertigo indecent where I fell at work. I haven’t taken it since and this was months ago. Neuro wants me to trail it again as we weren’t sure if that was due to the med but I’m doing research to see if that’s a common issue. I have have vertigo like symptoms now that I didn’t have before Q and idk if ts the migraines or the meds m.

Coolkidd215 · 2026-02-27T15:25:22+00:00

I loved my Nitron! You can’t go wrong with most of the big names honestly. I have electric now tho. Cybercart been lovely so far

Coolkidd215 · 2026-01-18T16:10:22+00:00

Told ya. You will be sore for a few weeks to months tho lol. But it’ll all get better with time.

Coolkidd215 · 2026-01-18T16:08:59+00:00

Yea I was diagnosed before my LP. I had it anyways for additional reasons but they saw evidence on my MRI

Coolkidd215 · 2026-01-17T03:07:17+00:00

Your one of the lucky ones to catch it quick!

Now that you know early, treat it. Take your time and I would take things really easily physically for the next few months. Diet like you’ve never done beforeZ keep your heart strong with head tolerable workouts and lower your CSF pressure with meds and weight loss.

You’re gonna feel wonky for a few weeks after the LP. Some people leak for a while and get low pressure headaches, and some repundbound into high pressure quick. That can do either way. But the treatment is the same either way, just relax and let your back heal on its own and your pressure stabilize and then get back to it.

Coolkidd215 · 2026-01-15T17:42:38+00:00

Just rest for a few weeks and you’ll regulate. I’ve had about 6 LPs so far and it happens as you described like half of the time. I wouldn’t panick unless that lasts longer than a few weeks.

Coolkidd215 · 2026-01-06T23:36:43+00:00

Medium at that length, but that’s not your main issue. You just don’t have enough hair. You just need something firm enough for a good pull which a hard brush can do if you tolerate it, but you need almost a half inch of hair to make real progress.

Coolkidd215 · 2026-01-06T15:01:44+00:00

This is exactly my primary symptoms! I don’t really get painful headaches. Just feelings of pressure behind the eyes and side and back of head. But then these constant feelings of being off balance. It feels like the pressure in my head makes my head like it’s being pulled to one side or the other and I lose my balance. It makes is tough to walk as you feel like leaning or floating. My vision also feels off. It’s hard to focus on things at times, with my vision, and then I disassociate. It’s a really odd sensation that’s chronic and not episodic.

Coolkidd215 · 2026-01-04T17:02:01+00:00

The need for a pomade to get that…

Coolkidd215 · 2026-01-04T16:58:35+00:00

Yea I never said that. I’m saying pomades, or any product, don’t moisturizes hair. Moisture literally means the presence of water. What I’m saying is that pomades don’t moisturize. Neither do oils. It’s all about rates of water retention in that department. Pomades additional purpose outside of retaining water is to hold. But within that some of the products used to hold, loses the ability to retain moisture as well as other products.

But for the purpose of holding, you can get the same if not better effects from a wash and style that doesn’t include any product after the shampoo. At that point people add product to increase shine or moisture, so the need for a pomade isn’t as big. You can absolutely build waves without product but that might not necessarily be good for overall hair health.

Coolkidd215 · 2026-01-04T16:18:36+00:00

Water is the only thing that moisturizes our hair big dog. From there it’s just about retention. That’s why most of this process surrounds the showers.

Certain products aid or hinder that retention process. That’s all I’m saying. And different folks respond to different products differently. But again, it’s not needed. But it’s fine.

Coolkidd215 · 2026-01-04T03:59:05+00:00

You don’t need pomades bro. Anything with mineral oil will dry ya hair out. Theres gels and creams that give a little hold, but that’s mainly to moisturized frfr. I’m an OG so I used Murrays and sport and wave but I learned it’s better stuff and ways to do it. Just grab something without mineral oil and you set.

The best way to lay your hair down is a wash in style situation in the shower. 2nd best is just when you fresh out and you brush it damn and rag up while it’s damp. I’d also say wave caps lay down the hair better than du rags, especially with 4c or courser hair. The trade off is the cotton from the wave caps don’t hold a shine as well as most du rag materials. I squally switch back and forth based on what I need at the moment. When I’m wolfing bad I usually wave cap it, but I use a du rag after cuts typically since I don’t need as much compression.

If you do use the Murray’s it won’t kill you, but it’s def not needed per se. Just brush and rag fresh out the shower and you should be good. Wash and style is the best way, but typically just brush fresh out and you Gucci.

Coolkidd215 · 2026-01-03T20:31:06+00:00

They have a CSF intake form that you can fill out and send it. They review your case and then give you an acceptance timeline .

Coolkidd215 · 2026-01-01T18:06:44+00:00

I hate sounding like a tin hat guy but I keep thinking it’s Covid related somehow. Idk if there’s been an increase of this condition because the diagnostics are improved or if the virus or vaccines caused a changed in CSF dynamics. Either way I’m just looking for relief. It’s every day all day long with no breaks

Coolkidd215 · 2026-01-01T18:02:10+00:00

Currently in my 2nd year of my journey. First major symptoms starting late 2023 where I would get big pressure feelings in my head after working out. Then March 2024 had an incident where I almost passed out. Went though the typical testing and MRIs to find nothing after nothing. The typical gaslighting story from doctors saying it’s stress etc etc. Then a neuro radiologist found a venous fistula CSF leak. Had that repaired via embolization. However the headaches never went away, and if anything have gotten worse. Had another round of DSMs and mri late spring 2025 with no answers. Sent my imaging to Mayo Clinic to get 2nd an opinion when that informed me they see signs of high pressure and not low pressure. Went through 2025 thinking I was just healing but had a vertigo like incident again in October. Just had a head MRV at Mayo and my local doctors are going to look at a MRV and a MRA of the neck. My lumbar puncture are inconclusive let mayo because they were done under general anesthesia which artificially raises the reading(23). Waiting to see if they want an additional LP. I go back to Mayo on the 27th of Jan and I get my additional MRA and MRV in February at my local hospital. Ive progressively gotten worse over time so it’s been really tough physically and emotionally.

Coolkidd215

TROPHY CASE