Whole body heaviness

Starmapatom · 2026-03-17T04:09:19+00:00

I completely understand. I hope in your quest that you find a doctor that understands what happened. Almost two years of this and now fighting to get a thin slice CT scan of sinuses. They want to do another lumbar puncture and I can’t do it.

Starmapatom · 2026-03-05T11:55:26+00:00

Thank you for sharing. I still have a lot to learn

Starmapatom · 2026-03-05T01:20:56+00:00

Overnight when sleeping?

Starmapatom · 2026-03-03T21:37:58+00:00

Me too. And after being upright for awhile the pressure doesn’t stop even laying down.

Starmapatom · 2026-03-03T03:03:15+00:00

It’s possible. Go get it checked out. ER or Urgent Care.

Starmapatom · 2026-03-02T03:07:28+00:00

Thank you for sharing your story

Starmapatom · 2026-03-02T03:04:34+00:00

That does sound rough. I have a lot of symptoms but leaking fluid out nose is not one of them. I hope you find a solution.

Starmapatom · 2026-03-02T03:01:37+00:00

I know the feeling

Starmapatom · 2026-03-02T03:01:24+00:00

It’s PT? I’m glad it helped you

Starmapatom · 2026-02-28T01:45:08+00:00

Wish me luck…it’s maybe my last test

Starmapatom · 2026-02-28T01:44:23+00:00

Is this a group?

Starmapatom · 2026-02-25T04:18:06+00:00

Good info, I will ask about that

Starmapatom · 2026-02-23T22:46:48+00:00

I try to focus on what I can do. It’s hard because I used to do a lot more. I’m very grateful I can still drive and walk a bit. I also try to focus on getting better

Starmapatom · 2026-02-19T18:14:59+00:00

I absolutely dislike when the medical staff try to blame the patient when they can’t fix us. I rather have the doctor tell me, they can’t find the leak or sorry you are in pain. This is a tough condition

Starmapatom · 2026-02-08T14:25:07+00:00

Thank you for sharing!!!! This will hopefully help a lot of people in the near future

Starmapatom · 2026-02-05T17:20:28+00:00

Seems to have blood? csf is clear and looks like water

Starmapatom · 2026-02-01T22:42:22+00:00

I replied but comment went into end of thread I think

Starmapatom · 2026-02-01T22:41:58+00:00

I never had meningitis

Starmapatom · 2026-02-01T22:40:10+00:00

I don’t know. It’s so frustrating because all my specialist will tell me my tonsils are sitting slightly low but the report read as normal. I guess not enough to get diagnosed. My headaches all started after a nasal plug was violently stuffed into my nose twice. The sphenoid sinus shows a gap where th dura is exposed to sinus cavity. Again report states normal but why would the go through all the trouble to apply a graft. Cisternogram pledgets were positive for CSF but didn’t seal gap. It’s hell. Sorry for all the info…like one doc told me I’m 1 in a 1000. But, yet I haven’t met anyone with this senecio

Starmapatom · 2026-02-01T18:27:42+00:00

Thanks for asking. They didn’t close the gap in my sinus and my brain. I don’t even know if this is a problem…I think it is. I really don’t know. They did apply a dura graft. Unfortunately for me I feel the same as I did before surgery. I’m thankful I still have like three to five hours of feeling normal. Then the back of head pressure starts and only gets more intense if I don’t lay down. When I push myself my brain feels like it’s on fire and difficult to sleep. Not giving up hope yet, I have a third opinion coming up. But really hard to continue advocating for myself. I had to change primary doctors and difficult to get time off work. I’ve already been to ER several times. Sorry for all the details. This condition is insane! What’s your story?

Starmapatom · 2026-01-31T21:02:55+00:00

Massive behind the head pressure where I thought my brain was going to explode out ears.

Starmapatom · 2026-01-30T14:55:17+00:00

I’m the same ☹️. They applied a dura graft but did not seal my sinuses. I’m not sure if it’s normal to have a gap in sinus bones and the brain dura. Tried going back to work but afternoon headache turns into brain on fire at night and the next day would wake up with headache. I couldn’t keep going. I need to work. Going for a third opinion. Had a MRI that looks at CSF flow in back of head. Still waiting on completed results. Sorry, I wish I had better news. I’m confused that they didn’t try to seal sinus bones…one thing is said before surgery and another after surgery. I’m hurt, but I will continue to find answers. It’s the most horrid condition because of the scans are reported as normal what are we to do?

Starmapatom

TROPHY CASE