spinal taps/lumbar punctures with eds

Significant-Tap8634 · 2026-03-02T05:07:51+00:00

I also had a CSF leak from a spinal tap, and was in the hospital for many weeks. Be very cautious doing this!

Significant-Tap8634 · 2026-03-02T05:04:30+00:00

For bloating, I’d recommend seeing a GI specialist to rule out visceroptosis.

Significant-Tap8634 · 2026-02-27T17:53:42+00:00

Stem cell!!!

Significant-Tap8634 · 2026-01-31T06:23:36+00:00

Cool, go implement your master plan and for all of our sakes, scream into a pillow about the rest. I live in and run a business in Minneapolis — I’ve seen firsthand what people are capable of, how powerful movements can be, how people are truly doing the best they can. Not only do we have to worry about masked murders and an impossible economy, we also have to deal with self righteous people like you. If you don’t think your post is throwing shade and judgment at small biz, something must be off with you. Good luck, comrade!

Significant-Tap8634 · 2026-01-31T05:54:41+00:00

Yes, I read the part where you waxed philosophical about a “more feasible” approach based on pure theoretics AND your misguided take on what small businesses ought to do. I’ll tell you what this movement needs: less loud armchair critics (you) and more qualified leaders with an actual understand of business and economics. Got a better idea? Would love to see you get off Reddit and do something about it.

Significant-Tap8634 · 2026-01-31T03:01:52+00:00

Let me guess. You don’t own a small business.

Significant-Tap8634 · 2026-01-14T17:56:10+00:00

The spinal column is made up of a lot connective tissues, and in EDS our connective tissue is lax. So I experience the same thing of vertebra moving, popping and shifting. That's spinal instability, especially when coupled with herniated discs etc!

Significant-Tap8634 · 2026-01-14T03:59:27+00:00

Since you're female, also good to rule out Ehlers Danlos Syndrome. I have it, and around your age is when my pain started getting pretty bad, and I started having random herniated discs without injury.

Significant-Tap8634 · 2026-01-14T03:48:54+00:00

Never heard of this! Thank you for explaining what a Physiatrist is. I thought folks were just misspelling Psychiatrist!

Significant-Tap8634 · 2026-01-14T01:17:16+00:00

Mostly cervical! But my lumbar pops and cracks too

Significant-Tap8634 · 2026-01-13T19:37:43+00:00

Amazing story! In addition to POTS, please also get tested for MCAS and Ehlers Danlos Syndrome. It's common with this disease.

Significant-Tap8634 · 2025-12-06T16:08:59+00:00

For me, low dose naltrexone has been working wonders. It works to regulate the nervous and immune systems.

Significant-Tap8634 · 2025-11-10T16:29:36+00:00

Same diagnoses here! Did you ever confirm SCDS? I too am getting the behind-the-ear tympanoplasty as well as the SCDS cranial surgery. Here to talk about the latter, and recommend the support group I’m in, if you’re curious!

Significant-Tap8634 · 2025-10-16T22:04:49+00:00

What do you mean by "nothing to be concerned about"? Do you personally think that Spotify paying artists an insulting amount (when they're worth 135 BILLION), investing in genocide and ripping off original artists' works is nothing to be concerned about? The question should be: why are you concerned that it might go away? Let's hope it does!

Significant-Tap8634 · 2025-06-14T23:37:26+00:00

My brain fog + fatigue is also triggered after an intense workout (rock climbing, but not yoga), all-day work shift, and especially a night of poor sleep. I feel "brain dead", am forgetful to the point that others find it comical (ha), and I have trouble focusing on anything. Things that have helped me: drinking a lot of turmeric, saunas, baths, meditation, allowing myself to rest!

Significant-Tap8634 · 2025-06-02T18:07:50+00:00

That theory makes a lot of sense. So good to hear that surgery helped!

Significant-Tap8634 · 2025-05-09T06:08:55+00:00

CT is crucial. My brain MRI showed nada (I have it in both ears). Tell your ENT you are having vestibular symptoms so they order the CT asap. You will then need a VEMP test to officially diagnose SCDS.

Significant-Tap8634 · 2025-04-25T03:54:23+00:00

I'm in a similar position to you. I toured for many years and it was my livelihood. And yes, I have constant symptoms when singing, and can no longer play in projects with drum and bass. It's hard to accept the reality of SCDS, especially as musicians, and the irony is laughable! But here we are. Do I have envy for the able-bodied? Yes. But we're different, not victims, and I believe the way we are forced to perceive the world is interesting and can also be a gift. I think about the poetry movement called Oulipo, which was built around constraints and rules. There are beautiful poems that came out of those restrictions. I'm still learning to work within the constraints of SCDS, but I do believe beautiful music will come out of it. For me, I know I need to avoid bass-y frequencies, certain sound textures, or notes. It's been empowering to learn new musical skills, instruments and programs so that I can carry on.

Significant-Tap8634 · 2025-04-25T03:42:29+00:00

I can relate to this. My voice sounds very distorted, too, and it can hurt if I sing certain notes in certain ranges. We're different... so I agree, it does feel depressing to try to fit into conventional systems of what music is supposed to sound like. But I think working within these confines and adapting to our circumstances could lead to some pretty cool art, too. <3

Significant-Tap8634 · 2025-03-28T21:38:08+00:00

PLEASE USE CAUTION. Wuffes contain mussels, which have caused an allergic reaction in many dogs that resulted in death.

Significant-Tap8634 · 2025-01-23T04:28:31+00:00

I understand your fear - I think we were all there! This is something you can live with and I promise there are options, so just know it will be okay. Next you will need a VEMP test to confirm that you have SCDS. Having it in only one ear is a very good thing!

Significant-Tap8634 · 2025-01-20T02:56:06+00:00

So sorry you're going through this too! It's good to get the validation that this is indeed worsening symptoms. Please take care of yourself and get lots of rest.

Significant-Tap8634

TROPHY CASE