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I have #IIH, #EDS and #PoTS. I have struggled to find information about managing all three so here's a thread sharing my experience 🧵
(Disclaimer: I'm not a doctor, this is intended for informational purposes only)
(Disclaimer: I'm not a doctor, this is intended for informational purposes only)
If you have a new headache that doesn't go away after a few weeks, visual disturbance, dizziness, tinnitus, pressure feeling in your head, whooshing in your ears. It might be a good idea to go get checked over by your doctor...
These were all my signs of increased pressure in my brain. If your doctor, like mine, just tells you you're stressed (insert medical gaslighting here) you can also go for a vision test with your optician as they can also look for signs of increased pressure.
1/🧵 Congratulations to @IIHDrBirmingham @MarkHeadache @DrMollan for their publication. Thanks @aswinchari for flagging this up as a #MorningPaper. #IIH #CSF @neuro_at_ic @e1v1m1 @markhwilson @AhmedToma13 @PaedNeurosurg @Samuel_Jeffery
link.springer.com/article/10.100…
link.springer.com/article/10.100…
2/ This 9-year prospective observational study included 490 #IIH patients in @uhbtrust with 98% being female (F:M was 53:1) with mean BMI 38, as defined by papilloedema (Frisen grade >0) in at least one eye. 67.1% required multiple hospital visits. 87% were treated medically.
3/ Medical treatment most commonly used included acetazolamide (27%) and topiramate (9%). #IIH relapse occured in only 3.7%. Ocular outcome mirrored reduction in ganglion cell layer (GCL) vol, perimetric mean deviation (PMD) and retinal nerve fibre layet (RNFL) on OCT. 
1. 👉 #TWEETORIAL 👈 join us to discuss Idiopathic Intracranial Hypertension (#IIH) - a rare disease of unknown cause characterised by high pressure around the brain - it is a debilitating condition which affects mainly young women
#IIH #headaches #tweetorial #MedTwitter @IIHUK
#IIH #headaches #tweetorial #MedTwitter @IIHUK
2. Women of childbearing age with obesity are mainly affected, though men can be affected too. Though rare, the incidence is rising in line with the global obesity epidemic
3. What does IIH feel like? Throbbing headaches are a very common symptom in IIH. They are usually the worst in the morning but can be made worse by coughing, straining, or lying down. Sometimes, headaches are associated with nausea or vomiting
An uns Patient*innen (#MECFS) wurde der Auftrag herangetragen, als Expert*innen in eigener Sache Ärzt*innen unsere Erkrankung möglichst einfach zu erklären (*). Ich fange mal mit der
💠orthostatischen Intoleranz (OI)
an. Über das faszinierende Phänomen gibt es viel zu sagen.
💠orthostatischen Intoleranz (OI)
an. Über das faszinierende Phänomen gibt es viel zu sagen.
Wie ist die OI definiert? Allgemein versteht man darunter die Verschlechterung von Symptomen in aufrechter Position. Sie kommt in den drei gängigsten #MECFS-Kriterien (CCC, ICC, SEID) vor, ist aber in keiner von ihnen Voraussetzung für die Diagnose.
If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch
– we would prove that you can get recurrent leaks that imaging will never catch
