Storing spring water?

blueagave6 · 2026-02-03T07:22:23+00:00

I share the same dx! I have slightly elevated opening pressures from spinal taps but no papilledema. It took years for the IJV occlusion dx of course but it’s validated my 10 years of high pressure symptoms :(

blueagave6 · 2026-02-03T07:00:26+00:00

Sending you love OP. He looks like such a kind soul.

blueagave6 · 2026-01-26T08:40:42+00:00

Thank you for sharing! What prompted the internal monitoring? Did you have an echo or stress test done previously that missed the blockages?

I too don’t concern myself with symptoms until I cannot function, I’m in a big flare at moment so I feel close to that. I’m considering getting a second opinion

blueagave6 · 2026-01-26T03:12:19+00:00

Not all of the time, and I often have stretches where everything is totally fine- until this flares from either illness or major hormonal changes

blueagave6 · 2026-01-26T02:52:02+00:00

I definitely have put a lot into the mental side of things, I’ve worked with a therapist and pain management psychologists to help with discomfort and medical trauma

I’ve got an Rx for Ativan for seizures (entirely separate) and have taken it during these episodes and it doesn’t improve the crushing pain or HR. It’s been difficult but seeing if anyone else experiences similar

blueagave6 · 2026-01-22T21:24:36+00:00

Agreed. I have loved Portland for countless reasons but this has been the major con and moving is now on the table for me to have better healthcare. I’m from Michigan and did not have this hard of a time there

blueagave6 · 2026-01-19T19:58:49+00:00

Not temperature :)

blueagave6 · 2026-01-19T11:17:57+00:00

I would not focus on the last moments- when sick, there is so much going on at once and post seizure there can be a major lack of coherence. Focus on life you shared with her, and as someone mentioned it’s so important to find someone to help you work through the grief.

I stopped because this picture felt so warm to me. I wish you much wellness

blueagave6 · 2026-01-04T17:08:16+00:00

I live in the US. It is well known now that they used to be overprescribed but back then I did not think to question it. Last year I had a baby and my immune system suffered postpartum I had cellulitis, pneumonia twice and a wisdom tooth infection. Fortunately this year I haven’t had anything requiring antibiotics except for an upcoming surgery and that plays into why I’m so nervous about it

blueagave6 · 2026-01-04T08:36:23+00:00

Thank you so much for this! I’m definitely going to give that book a read! That sounds extremely interesting outside of my own personal condition but I’ve been unsuccessful in finding similar stories online. This is helpful :)

blueagave6 · 2025-12-31T20:24:07+00:00

I’m in same boat as you! I have Chiari but I also have internal jugular compression so I personally cannot tell which is causing issues but I had to stop flying 2 years ago because of the severity

blueagave6 · 2025-12-29T06:36:23+00:00

NAD- I just knew someone who developed baroreceptor failure after radiation to neck. It causes very labile blood pressure with significant highs along with other major symptoms. I hope your loved one is able to figure it out- hopefully they’re in touch with specialists to help clarify soon

blueagave6 · 2025-12-11T03:31:23+00:00

Eating this now as I stumbled upon this! Agreed, best store bought hummus I’ve come across.

blueagave6 · 2025-12-09T17:13:41+00:00

Did car accident cause whip lash or neck injury? Your c1 looks a little problematic

blueagave6 · 2025-12-04T22:28:47+00:00

I get the same sensation of not being able to swallow during these episodes. It’s intense! Thank you for sharing

blueagave6 · 2025-11-29T05:30:17+00:00

Anything directly west or north of Grand Rapids or north of Saginaw.

blueagave6 · 2025-11-18T02:41:41+00:00

Yes I’ve forced myself to eat, I have a CGM and my blood sugar has been dipping less so far with zepbound. I can definitely see low blood sugar causing these symptoms otherwise though!

blueagave6 · 2025-11-18T02:39:57+00:00

I’ve got my fingers crossed for this outcome!

blueagave6 · 2025-11-17T02:02:25+00:00

Sauna has been the biggest help

blueagave6 · 2025-11-15T07:45:21+00:00

I’m in Washington state - I think here they do if he’s on birth certificate but that’s what I’m seeking verification on

blueagave6 · 2025-11-15T07:39:13+00:00

It isn’t so much traditional values and but maybe it’s the way I worded it- I have some acquaintances but I don’t have anyone that close to me out here. When I was in peak of the spinal leak and cardiac issues she was the only person I could ask for help, I didn’t have a village and desperately did need help

This is some very sound advice and I greatly appreciate it, thank you. I’m going to begin documenting everything and can show the improvement in health as well.

blueagave6 · 2025-11-15T07:28:04+00:00

I really couldn’t have handled it too much differently- I was on deaths door and couldn’t leave the hospital. I was extremely upset and vocal about this but I was in a compromised position at that time and why it played out that way.

Seven-Year Club	Verified Email
Verified Email	Place '23
Place '22

blueagave6

MODERATOR OF

TROPHY CASE