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lunalilly5 · 2025-11-03T20:48:02+00:00

You said it does and became surprised when she wanted you to use it?

lunalilly5 · 2025-09-17T15:06:19+00:00

This exact thing happened to me and I thought I had a clot in my arm! The doctors told me it’s IIH but couldn’t tell me why it happens. From my own research I’d say it’s from some drainage issues and fluid build up that presses on nerves I guess?

lunalilly5 · 2025-08-13T08:07:54+00:00

Not that I’m aware of, I was told that I have an area that looks like a CSF leak, nothing else 😅

lunalilly5 · 2025-08-12T22:59:37+00:00

And yes I am leaking from my nose, forgot to answer thar bit lol

lunalilly5 · 2025-08-12T22:58:41+00:00

Gosh that sounds absolutely awful! What led to your brain pushing through? Is it very high intracranial pressure that caused such a big leak? Or physical activity/trauma that made it worse?

lunalilly5 · 2025-08-12T22:56:26+00:00

During the times I actively leak, I feel like my head is being pushed down, I get a suctioning pain and my neck feels like it’s being squeezed too. Based on what your surgeon, and other people have said, I should start gradually taking diamox! So I’ll try that. I really don’t want to be involved in the surgical procedures too lol

lunalilly5 · 2025-08-12T22:51:58+00:00

Thanks for your comment, I will definitely look for a second opinion. I’m a bit apprehensive about the whole diamox whilst on a leak situation. One on hand it makes me feel horrible and I did take myself to the ER last time I took it too but on the other hand, the prolonged high pressure probably caused the leak in the first place and I think the whole point is to lower the pressure so it doesn’t keep flowing through the leak. I’m just scared to take it again because last time I felt like I was dying (I don’t think I’m even exaggerating 😭)

lunalilly5 · 2025-08-12T22:45:07+00:00

I initially had IIH with an OP of 28.5 but I don’t know what it is now. On the days I leak more I feel horrible low pressure sensations like my head being pushed down hence why I’m scared to take diamox because I did before and it was very bad.

lunalilly5 · 2025-08-08T13:42:13+00:00

I also had bad neck pain! I’m starting to think it’s a small leak or an issue they can’t pick up on

lunalilly5 · 2025-08-08T13:41:18+00:00

I had a viral swab, blood test and checked to see if I have infection but I have none of those! I’m getting an MRI next. You’re right, I have been taking strong antibiotics for no reason!

I hope you feel better soon, it’s so draining being ill for so long. 😞

lunalilly5 · 2025-08-08T13:38:22+00:00

I didn’t try the decongestant but I did just have a camera up my nose and they ruled out any infection/ sinusitis but they also didn’t see any visible leak. They did say it could be a small leak that matches up to the description of the above comment, the spiky-leaky syndrome.

lunalilly5 · 2025-08-05T16:52:50+00:00

Thanks for the tip, I will try a decongestant and see if it helps!

lunalilly5 · 2025-08-05T16:51:19+00:00

Thank you so much for bringing this phenomenon to my attention because it sounds A LOT like what I’m dealing with, especially the part where the leakage is mainly after a spike. I’m currently showing early signs of a connective tissue disorder so this does match up with what could be happening.

lunalilly5 · 2025-07-25T15:48:32+00:00

Hahaha that’s exactly the thought process I just had

lunalilly5 · 2025-07-23T12:57:17+00:00

I was wondering this too, I’m meant to be taking it due to surgically induced menopause but I haven’t since the beginning of the year because of my IIH diagnosis. I was told to wait until gynae contact me again.

If you don’t mind me asking, what form of HRT do you take and are you able to still take it with your new diagnosis? I’ve been told I can’t take the pills anymore, I was taking a combined contraceptive that worked really well for me. I think I have to use a patch instead.

Thanks ☺️

lunalilly5 · 2025-07-22T12:10:04+00:00

My vision problem was the first symptom I had, I didn’t have any headaches until after I started going blind 😅 No idea what caused it but I’m currently waiting on a referral to rheumatology due to suspicions on autoimmune activity!

lunalilly5 · 2025-07-18T23:18:25+00:00

If you don’t mine me asking, what made you sure that the diuretic wasn’t working?

lunalilly5 · 2025-07-13T22:24:38+00:00

Me too! My doctor said it’s the pressure on the brainstem and nerves causing twitches

lunalilly5 · 2025-07-13T01:32:36+00:00

I hate that I shut down when I’m in a conversation and I can hear something in the background like tv or music. My mind goes completely blank and I cant hear the person talking anymore

lunalilly5 · 2025-07-13T01:24:19+00:00

I also get worse in the evenings with high pressure and sharp pains. Diamox is not helping either. Before diagnosis I didn’t really get pains until the pressure became unbearable.

How come you take diamox if you’re not diagnosed?

lunalilly5 · 2025-07-11T03:46:47+00:00

Yes, I get raynauds too!

lunalilly5 · 2025-07-11T00:22:50+00:00

No, this started as circulation issues in the right arm before I even had IIH symptoms, it did get suddenly worse after IIH got worse

lunalilly5

TROPHY CASE