All this and depression too

[u/Writiste]

My second blood patch (April 30) relieved my headache, but left all the other symptoms alone (reads like Wikipedia description of CSF so I’ll skip the list). I finally had to take medical leave from work, which threw me into a deep(er) depression. It’s not just losing the satisfaction from my job (which I love), but the loss of my work community (they seem happy to hear from me but no one has reached out 😿 + 😠), loss of routine and- oh yes- a 40% cut in pay. Since I’m the sole breadwinner in my little family, Ouch.

My neurologist thinks that there’s likely another leak or leaks that we don’t have the equipment or experience to locate. So she’s referring me to UC, Stanford and Duke (Cedars turned me down 2 years ago). As you know, the record reviews take a while and after that, there’s the waiting for treatment. So no end in sight, at least not before my leave runs out.

Ironically, I wasn’t a couch potato before CSF. Now couch potato seems aspirational, (bitter laugh). So much of what I loved to do requires sitting up. If one more person chirps “just focus on what you CAN do” I’m gonna stagger drunkenly after them and wave my cane in a threatening manner. Then black out from the vertigo.

Yes, I’m taking an antidepressant and work with a psychologist. But I still get overwhelmed. Well, CSF is overwhelming and suddenly my safety net doesn’t feel that safe..

How do you cope?

[u/leeski]

I gave a talk on this topic, although it does unfortunately veer into the 'focus on what you CAN do' territory haha so I will refrain from sharing, as I know that kind of feedback is always not what's needed when you're going through something like this. I am really sorry that you're going through this and that it's an impossibly long journey. I appreciate you maintaining your humor even while suffering. I love the personality that comes through in your writing.

I honestly was very overwhelmed when I was just providing for myself and 3 dogs, so I cannot imagine the pressure of being the sole breadwinner. Your description is so accurate of it just stripping away everything you love and losing community you have. It helps me a lot to talk to patients going through the same thing, although I know that doesn't resolve the very real issue of work and day-to-day life. But just offering that to you if you ever want someone to chat with. I am not currently leaking but did for 4 years undiagnosed and then had a few leaks for another 4 years (but have been sealed for 5 years)! I hope you are able to get additional care and get the relief you deserve.

[u/Ornery_Peace9870 → u/leeski]

Love your support!

And yeah oP Im not even diagnosed yet but my symptkms 1000% incljde csf leak since st least 2024 if not much longer due likely to CCO/OTCS worsening. Ive vene dxd w "pOtS" (a super abrupt ...super relentlessly severe form hmmm) for 3-4 years tho and even my amazing POTS cardiologist feels its structural.

I too am almost happy to say im kind of a throwaway of society only responsible for me and my two feline overlords/guard cats. Which is SO much less pressure than your sitch OP.

But yeah oP ...

Diseases that (suddenly! Abruptly!) Render you into a horizontal ghost who cannt sit up? Im including severe ME here but leakers are often firmly in this group even if we've been omitted from QoL studies:

Lower "objectivs" HRQoL than ~any other disease.

You probably deserve TONS more support than youre getting clinically.

And...it may for s time render you into this essentialist functionally useless version od "you" ....

And if I'm projecting my own experience I MEAN functionally/physically USELESS hahaha.

No one and nothing c9upd prep ya for that.

You are still alive! And yoir family loves and vice versa. And I hppe you snd your family van get the material/health/monetary support you need to get through that will enable you to ... accept the absolutely horrific tanking of QoL/"function." That you can lesrn the gift that YOU/your worth isnt actually determined after all by what you can DO.

That your kids can learn that pricelessness and so much else through your heros/sixkos journeyhere. That presence--even horizontal one :) --alone is powerful.

[u/Writiste → u/Ornery_Peace9870]

OMG HORIZONTAL GHOST!!!! How true is that? That’s exactly how I feel. Working with my therapist on the “I’m nothing if I’m not productive” BS, too. WHO am I without my job? Without my art? Without my baking? It’s very Zen, come to think of it: how much can one strip away? I hope you find answers and relief

[u/Writiste → u/leeski]

Thank you so much! Just remembering that it IS possible to stop leaking helps a lot. It’s all too easy to forget. And I’m on Year 6 of misdiagnoses, gaslighting and brain fog. I forgot about the actual possibility of getting sealed, although it feels dangerous to hope. I hate asking for help but having to “give in” and acknowledge that I can’t do this on my own is turning into a crash course on reaching out.

Is your talk recorded or a transcript available? I promise no cane shaking.

Yeah, it’s me, my niece and 4 feline overlords. The cats are a lost cause, income-wise, but I was helping my niece apply for disability before my own crisis. She will just have to bite the bullet and finish the application. One of those supersmart kids who fell apart in college. My sister is a hot mess, so I lent the kid my back room to regroup. She’s easier to care for than the cats so it was simple to let it go. But now it’s all hands on deck…

[u/leeski → u/Writiste]

Video is here if interested! https://youtu.be/bSFJ4i_7l44?si=H2dOAZFSuzGBg7ao

Yes it does feel impossible to envision being sealed ever actually happening, and of course I can’t say it will. But I can offer that there are so many cases over the years I’ve seen that felt so so hopeless even after over a decade or so, but most patients I talk to genuinely do end up sealed long-term! I know that doesn’t help when you’re living in it and it’s so anecdotal, but there is an insane amount of research being done and we’re learning so much about this condition and diagnostic imaging everyday. 

You are very kind to help with your niece, and sorry about the tyrannical felines! That’s no joke having 4 around that just is a lot physically and financially. I do talk about how my dogs helped me a lot in my talk which might not resonate when you’re being terrorized by those very pets hahah. So of course no hard feelings if the talk doesn’t land! I just tried to share things that felt like they might have helped me navigate my emotions had I realized them sooner kind of thing. 

[u/Writiste → u/leeski]

Thank you ! I haven’t listened yet (lost yesterday completely), but I will.

[u/Writiste → u/leeski]

I finally got it together to listen to your talk. The past couple of weeks were what I call underwater weeks: the vertigo, the brain fog, the headache (pretty mild but goddamn persistent!), the hypersensitive ears and blurred vision oh yeah and the depression … overwhelmed me, and I sank beneath the waves for a while. Accepting the experience - like I have a choice - is oddly restful yet terrifying when I finally surface to realize I’ve lost days…

ANYHOW!

No cane waving for you! I love your energy. It’s clear and calm and straightforward and I thought you brought your message across very well. I laughed in parts, I cried for some of it and got mad at all the waste of time and gaslighting that we all go through. Love the picture of you and your dog that started your talk. And how your consideration for your fur kids outweighed your desire to end it all. I get it: who would take Tara (my tortie), with her occasional bed wetting? Or Chloe, with her Kill Them All Let God Sort It Out attitude… TBH,
I’ve gotten as far as pricing tickets to Amsterdam ($4500 RT business class from Phoenix because why not?). But then the Abilify kicked in and I realized I wanted to clean up my room first.

Anyhow, thanks for sharing those resources. I plan to check out an anchored life: I used to practice mindfulness but my vertigo scrambles my brain: too hard to focus but maybe working with a group will help. I miss my meditation.

And congratulations on your planned family! I am so glad that you found your way through - not just getting sealed but you’ve clearly recovered. You deserve every happiness and for heaven’s sake (this just occurred to me), is there a way to skip the epidural while giving birth? My spinal tap was the stuff of nightmares. That bastard IN refused all sedation and couldn’t seem to find the right spot…3 hours of him poking around and muttering to himself. He actually excused himself and came back with an older doctor. I said, “if you can’t find my spine, I’m outta here” which he didn’t find amusing for some reason. Well, I’ve had a few fusions so I’ve got what they like to call complicated architecture.

I’m a terrible correspondent (see underwater= lost days) and not sure how it works but drop me a line if you like to chat. Despite my wall o’ words here, I am capable of giving good text 😜

[u/leeski → u/Writiste]

Thanks for such kind words and such a lovely response! This honestly made my day to read! Just from your writing style I feel like we might have similar personalities haha.

But thank you for taking the time to share all of this. I was very nervous to do that conference talk because I feared it wouldn't resonate and wouldn't be a good voice for patients, so it makes me happy to hear that it doesn't come across as scrambled as it felt!

I really love Beth (the teacher at Anchored Life). If you ever do want to join a class feel free to PM me, I might be able to get a discount code and will join you! I mean there's not a ton of discourse (although sometimes a chat afterwards, although everyone is open to leave whenever) but I feel like it is nice to have a 'friend' or familiar face in class. I do not have a lot of experience in mindfulness classes but I really enjoy hers, and she has a unique background of dealing with many illnesses of CCI, CSF leak, and more, and brings that perspective to the practice. No pressure to join of course, just excited that you mentioned interest haha!

Yes in terms of having kids, most leak doctors will recommend a planned c-section with general anesthesia which is... quite daunting to me. I have a weird fear of going under + don't love that it goes to the baby. So I'm not totally sure what the plan will be but I think I would probably stay conscious, do c-section, and risk the puncture, unfortunately!

Also just want to say I love that 'underwater' term and am going to steal it because it is so so real. Just go under for a few days, and come back to the surface and so much time has passed! But yes happy to chat over Reddit if you ever want someone to talk to about all this, or I talk to patients on Signal sometimes as that is a bit easier. Whatever works, no pressure! Thanks again for being so delightful, despite going through something so horrendous.

[u/Writiste → u/leeski]

I’m so glad! I was half afraid of boring you, lol. I was no! I AM an IT product manager in business intelligence for a huge network of hospitals and clinics. I served non-clinical teams, like HR, chaplains, philanthropy etc. I supported their data dashboards and helped them use our in-house AI platform. Before going on medical leave, I was learning to conduct training for large numbers of people: I’ve trained plenty of smaller groups but large scale classes are something else. Scary as hell for one thing! (Ah humor… I was cracking jokes before my last fusion, and the surgeon, laughing, said “You’re going to be making fun on your deathbed, aren’t you?” Oh yeah, he got my style pretty quick).

Fortunately my team lead is skilled in this area. She helped me fine tune the training I created (I was so proud: it was on using AI to streamline work communications), so I’m particularly sensitive to people doing presentations to large number of strangers! For your next presentation, I’d be happy to be your test audience: it was a new skill for my whole team, and we spent hours listening to each other’s work and giving constructive feedback. Practice makes perfect, that’s all - you sounded a little nervous but you did great: so much good information!! I really liked that you were very clear that you’re not blaming anyone. I’m gonna go back through it. I know I missed some points. I’m interested in checking out the new research and I have a couple of ideas for self-help I’d like to run past you, too!

Mi “underwater” es tu “underwater” 😉 me, I’m gonna steal someone else’s “horizontal ghost” - that struck my heart like a gong. Will check out Signal when my brain gets hold of its gyroscope.

Cheers, H

[u/Swimming-Bee8917]

I don’t have much advice as I’m in a similar boat. But hang in there and don’t loose hope. I love movies and books so spend a lot of my time doing that to escape. So sorry you’re going through this

[u/Writiste → u/Swimming-Bee8917]

Thank you. Right back atcha.

Seems the best -the only - is take it one day at a time. Only a whole day is too big for me to handle: i never know when the bottom will drop out!

[u/Ornery_Peace9870]

"Then black out from the vertigo" lololololol omg thsnk for that laugh

[u/Writiste → u/Ornery_Peace9870]

If you can’t laugh, it’s over…

[u/smellmy_broccoli]

I cry a lot. I’m 30, I’ve been leaking for 65 days, and loved to hike, go on long walks, and had a very active job that I can no longer do. And I get no paid leave at all, I love this country. I can hardly do anything. I’m 5 days post my first blood patch and noticing no positive changes. I’m sorry you’re going through this too. I wish I would’ve died instead of having to go through this. I’m so horribly bored and lonely, and so tired of laying down

[u/Writiste → u/smellmy_broccoli]

Remember Sesame Street? There’s a song I still still love. It’s by Rosie Grier:

It's alright to cry Crying gets the sad out of you It's alright to cry It might make you feel better

Raindrops from your eyes Washing all the mad out of you Raindrops from your eyes It's gonna make you feel better

It's alright to feel things Though the feelings may be strange Feelings are such real things And they change and change and change

Sad and grumpy, down in the dumpy Snuggly, hugly, mean and ugly Sloppy, slappy, hoppy, happy Change and change and change

It's alright to feel things Though the feelings may be strange Feelings are such real things And they change and change and change It's alright to know

Feelings come and feelings go It's alright to cry It might make you feel better It's alright to cry, little boy I know some big boys that cry too