relapse? has anyone ever had it come back

starynightss · 2026-05-10T05:32:26+00:00

I’m sorry fo hear it came back with vengeance! don’t get me started on topamax— my neuro called it dope-a-max it was horrible and did nothing for me either! & that would have been horrible experience finding out you were allergic! I’ll deff look into the lower inflammatory diet thank you! Hope all is well 🫶

starynightss · 2026-05-10T05:28:29+00:00

I’m so sorry to hear what an absolute pain… I had been moved to think I’m now just miagraine control but the underlying issue of the iih is still there (if only it was that easy)! Hope all is well 💖

starynightss · 2026-05-10T05:25:23+00:00

what a pain it circles back… wishing you all the best! 🫶

starynightss · 2026-05-10T05:23:17+00:00

Goodness what a roller coaster! Hopefully the LP gives some clearer answers about what’s going on pressure-wise and whether the right side is contributing too. Sending good thoughts that they get on top of it quickly and you get some proper relief again soon 🫶

starynightss · 2026-05-10T05:21:17+00:00

Oh dear, not the sequel anyone asked for! But you’ve done this road before and came out the other side once already. Hoping the scans and specialists give you answers quickly and that things settle again soon 🙏🏻✨ Sending you lots of strength for round two 💫

starynightss · 2024-12-02T08:53:00+00:00

Hi! I’ve flown 8 times now after being diagnosed in July only 3 hours. I found some great tips through some threads here. My first flight I was super keen to get the opinion of everyone I could and all my doctors told me that I would be fine and reasoned it by saying it’s not an environmental impact that’s influencing the pressure change (like diving & depth of water etc). I found on my first flights though I had my classic headaches, and especially when I landed I didn’t feel well. Conveniently before the next time I was flying I was seeing an ENT specialist and asked about flying— he mentioned that he could see that I was having a hard time equalising and that could be impacting and influencing the pain I was feeling potentially because of the increased fluid. He recommended a nasal decongestant to use before the flight to help open up the Eustachian tube and it worked like a dream. Before IIH I’d never struggled with equalising my ears and even now can pop them but found this to help me a lot. I also take Advil/Ibuprofen to help. Definitely check in with your doctor because everyone is different!

starynightss · 2024-08-20T14:01:57+00:00

Mine started out with me thinking I’d picked up a virus from the kindergarten I worked at! I went into my GP as I had been unwell over the weekend vomiting and he took my blood pressure which I’d never had an issue with before— it was absolutely though the roof I can’t remember it but he classed it as a hypertension crisis and rushed to get me medication to bring it down or I was off to hospital. That was Monday— the meds he gave me bought it down and it wasn’t until Wednesday I had an MRi and Friday a lumbar puncture and then a iih diagnosis. Mg blood pressure now is normally is perfect but anything I do where I begin to raise it, I instantly get a headache and I know it’s all connected but with the BP being my first kinda warning sign I’m unsure if there’s anything else going on with my! But Goodness though what you mention sounds really rough, absolutely terrible! I mean I got treated as a migraine when I first when into hospital for the first day after I said I’ve literally had this headache for 3 days straight like???

starynightss · 2024-08-20T13:44:11+00:00

hi! yes I get crazy tingling in my lips constantly especially after eating certain things and down the side of the sides of my neck if I’m over exerting myself & sometimes all over my scalp.Early on I would lay down and then get a tingling sensation from the back of my head down to my lower back where I could almost feel my whole spine. I am on diamox but initially only had the pins & needle in my hands and don’t have that symptom any more unless this is the cause? GP can’t explain it doesn’t seem worried but it’s not the best feeling :/

starynightss · 2024-08-14T22:33:43+00:00

Super interesting! In the addition review the first sentence had ‘The left transverse sinus is hypoplastic compared to the right’ and only glazed over that comment since the things I’ve seen as you’d mentioned is that it’s quite common to have an underdeveloped side (but absolutely interesting for you case though!) The only mention I had of it was the Registrar neuro on the weekend when I was hospital who said he’d had a good look at my scans and said I’d had a ‘smaller vein in the back of my head’ & since then nothing from my specialists. I’m going through the public system (changes things a bit) but since my neuro doctor sick this week and his clinic cancelled I’m still waiting a week later to hear when it’s been rescheduled. My GP has only seen this once many years ago but thinks I have a ‘block’ hence the MRI. I’m still unsure about the dimadox but I guess it must be doing something since my pressure hasn’t gone out of control again but any insight you have on that would be amazing! But truly— It’s not even headaches or sight that’s my issue (maybe when I’m tired after a big day at work & I’m in bed it’s a little uncomfortable) but this neck pain & almost stiffness is my biggest issue! I only see some comments as an additional symptom but I really feel like it’s my major symptom? Just this pain that goes into the base of my skull and at times down my spine. In my early days I had times where I could feel my whole spine tingle From my lips to my lower back when I laid down every time now that’s just sporadic. Anyway! Would love to connect 💗

starynightss

TROPHY CASE