#IIHWOP - Twitter Hashtag

9 months ago

...To hospital, for a LP to relieve the pressure. Now the ED doctors great. But the ones upstairs ophthalmology and Neurology "because I don't have swelling, I don't get a LP. Also it won't work for me" it relieves it for a bit. #iih #iihwop #intercrainalhypertension

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JoJo @yoyo__jojo

11 months ago

8 yrs after my shoddy LP shunt with @NHS_Lothian and #Neurosurgery #liaquat is still #humilliating #belittling #scaring #patients! He ruined my life! I still live every day with high pressure headaches, painful shunt and no follow up. He should be #struckoff #IIH #IIHWOP #neglet

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Keeley Watts @KeelzA37

over 2 years ago · Leicester

Why should patient with #IIHWOP not be given fair treatments just because doctors can't see swelling. Sick of being passed from pillar to post not receiving any treatment and being left in extreme pain with failing vision and tinnitus to point of loss of hearing.

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Keeley Watts @KeelzA37

over 2 years ago · Leicester

Very upset and distressed at the lack of treatment for patients with #IIHWOP. Been three years and still no closer to feeling better. Last LP was 45 and wouldn't lower bit it's OK because I don't have Paps. I can't be ill. It's about time people looked more into treatments @neuro

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Jo @jo_joStitch

over 3 years ago

@NeuroAlliance #PicsForThe1in6 #IIH #IIHWOP

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Nanda @Nanda7189

almost 4 years ago

We zijn weer in het UMCG helaas 😞. Me dochter nu haar 4e lumbaalpunctie dit jaar #IIHWOP #idiopathicintracranialhypertension

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Raresearching.org - Nel @raresearchingdk

about 5 years ago

Intresting research at the moment for myself. My father has been diagnosed with vascular dementia, on deeper looking IIH and vascular dementia have a very rare genetic link also known as NOTCH3 I have several papers of anyone wants to read more. #IIH #Rarediseases #IIHWOP #genes

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

Hey folks - wanna hear how my Neurologist treats me - I'm in extreme pain but apparently her and Rigmor Jensen don't want to help me. Is this really the care patients with chronic illness should get. #IIH #IIHWOP #nesvoid .https://t.co/EQ0leofBg4

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

Okay #medtwitter #Neurology #sciencetwitter. What do you see 🕵️‍♂️🕵️‍♂️- I see something pretty wild around my maxillary area on the 9th scan but I'm not a trained eye on this! #mri #scans #NESvoid #IIH #IIHWOP #csfleak #hEDS #chronicillness #radiology

raresearchingdk's tweet photo. Okay #medtwitter #Neurology #sciencetwitter.

What do you see 🕵️‍♂️🕵️‍♂️- I see something pretty wild around my maxillary area on the 9th scan but I'm not a trained eye on this!

#mri #scans #NESvoid #IIH #IIHWOP #csfleak #hEDS #chronicillness #radiology https://t.co/qSMN2p67PN

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

😳😳 #radiology #medtwitter Cysts on the c7 nerve and c8 nerves. What the hell does this all mean ? Tarlov? If so then that means I've been right all along about my #csfleak #tarlovcysts #ScienceTwitter #Medstudent #Neurology #IIH #IIHWOP

raresearchingdk's tweet photo. 😳😳

#radiology #medtwitter

Cysts on the c7 nerve and c8 nerves.

What the hell does this all mean ? Tarlov?

If so then that means I've been right all along about my #csfleak

#tarlovcysts #ScienceTwitter #Medstudent #Neurology #IIH #IIHWOP https://t.co/czBEZm1wgA

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

#medtwitter #Neurology-#ScienceTwitter Pneumocephalus with IIH showcasing with a side of CSF leakage. 😳 https://t.co/Iu3LfnXqll Gotta get more people aware of this for #IIH #IIHWOP @IIHUK have you ever heard of this? Maybe @IIHDrBirmingham perhaps #raresearching

raresearchingdk's tweet photo. #medtwitter #Neurology-#ScienceTwitter Pneumocephalus with IIH showcasing with a side of CSF leakage. 😳

https://t.co/Iu3LfnXqll

Gotta get more people aware of this for #IIH #IIHWOP @IIHUK have you ever heard of this? Maybe @IIHDrBirmingham perhaps #raresearching https://t.co/SNNXm1crbc

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

Also I've got tremors. Worst in my left than my right. #IIH #IIHWOP - now IIH isn't known to do this right. The vial I've managed to get off my husband from my lab to do a sample of the nasal discharge to give to my Dr whenever she next comes 🙄

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

Intresting to see this - given I just got my bloods back and something looks a little off! 🙄. #IIH #IIHWOP #NESvoid #RareDisease #chronicillness

raresearchingdk's tweet photo. Intresting to see this - given I just got my bloods back and something looks a little off! 🙄.

#IIH #IIHWOP #NESvoid #RareDisease #chronicillness https://t.co/w30xRAJLh3

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

#Neurology #neuroscience folk - can someone explain the BERN score to me . Thanks 👍 #IIH #IIHWOP #brain #NESvoid

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

Once again being medically gaslight as I struggle with a extreme high pressure issue. Drs keep saying " it's just a migraine, it's just a tension headache". Dismissive of the fact I have edema, visual issues and other OBS for high ICP. #NESvoid #IIH #IIHWOP

raresearchingdk's tweet photo. Once again being medically gaslight as I struggle with a extreme high pressure issue. Drs keep saying " it's just a migraine, it's just a tension headache". Dismissive of the fact I have edema, visual issues and other OBS for high ICP.

#NESvoid #IIH #IIHWOP https://t.co/dbSck1nFRv

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

And the results came back from the basics at the eye student on Wednesday. Things seem to have changed but no idea what any of this means!! 😓. #IIHWOP #IIH

raresearchingdk's tweet photo. And the results came back from the basics at the eye student on Wednesday.
Things seem to have changed but no idea what any of this means!! 😓. #IIHWOP #IIH https://t.co/68XKoNrnId

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

This research sums up what I've been saying for the past 6 years. Finally other medical professionals telling exactly what I've been saying with the raresearching platform. I really hope this is the start of better treatment or care for the minority of us with #IIHWOP .

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

This ... Is everything!!! Seriously I've tried to make my neuro team understand this for the past 6 years... Along with " Papodilema may not have occured yet because your body has a higher tolerance to ICP". Yet my Neurology team tell me I'm "crazy". #IIH #IIHWOP #dhc

raresearchingdk's tweet photo. This ... Is everything!!!

Seriously I've tried to make my neuro team understand this for the past 6 years...

Along with " Papodilema may not have occured yet because your body has a higher tolerance to ICP". Yet my Neurology team tell me I'm "crazy".

#IIH #IIHWOP #dhc https://t.co/PBTEyy5Vmh

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

For this of us with #IIHWOP this could be extremely intresting to read. I've found that the majority of the best research is coming from those noted.

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Raresearching.org - Nel @raresearchingdk

over 5 years ago

If your a #dr #neurologist or #specialist in #IIH #IIHWOP and take private paying clients for a consultant please email me to [email protected] - this is literally my last option. Because I can't suffer anymore, it's impacting my life. #neurologsk #DHC

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