Thread by @onechaoticbrain

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)

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.

This is also a good thing about having regular eye tests (if you can get them) because they can often spot the signs early. My optician genuinely saved my life after doctors dismissed me for 6 months. It was only having proof from the eye test that the hospital took me seriously

Things I wish I'd known before getting an IIH diagnosis:

1) Lumbar punctures can be much more complicated if you have EDS and other comorbidities such as scoliosis. I had my lumbar puncture done with zero guidance. I wish I had requested lumbar puncture with guidance...

Doctors since have said I should have had an x-ray guided lumbar puncture or a ultrasound-guided lumbar puncture. Due to scoliosis my spine was not where they expected it to be and this has caused me further complications.

Just because the standard lumbar puncture is not done under guidance does not mean you don't have the right to a guided lumbar puncture. I wish I had known I had EDS then and that I requested it to be done under guidance

2) Lumbar punctures as a treatment is generally a bad idea for those of us with IIH and EDS. The relief from lumbar puncture is often short lived and with EDS you risk further complications like spinal leaks. A doctor said to me they should only be used when absolutely necessary

3) Local anesthetic - those of us with EDS tend to be resistant to local anaesthetics. This is important to discuss with the anesthetist. Here is a link which might help when explaining hypermobility.org/local-anaesthe…

Next up management. This is the thing I've found the hardest. Managing IIH and PoTS is really difficult because the treatment of each condition feels completely opposite. IIH is about removing excess fluid from the body and PoTS is about adding and retaining fluids.

For IIH I have to take Diamox which is a diuretic and depletes the body of potassium. This makes my PoTS much worse. I also have to be careful about adding lots of salt to my diet. It often feels like a balancing act between the two conditions

I'm currently managing my #IIH and #PoTS by drinking electrolyte drinks. Most days I have about a litre or a litre and a half if I do any form of exercise. I find this helps to balance my body. Also the addition of potassium through things like bananas and coconut water helps

So far all the doctors have said there is no connection between the three conditions. However my hypothesis is that my hEDS causes lax ligaments in my neck and spine leading to movement/ misalignment which then interrupts CSF flow and also causes my dysautonomia

I have only just seen a doctor who is knowledgeable in PoTS and I'm waiting to see further doctors but I wish I had this information when I was first diagnosed so I hope this thread may help someone

IIH diagnosis often comes with medical gaslighting and fatphobia because there isn't a clear understanding of the condition or a known cure. So please know your body is not the problem and you deserve to be listened to and not blamed.

If anyone has any other tips or ideas on how to manage these conditions together please add below. IIH affects 1 in 100,000 and we need more awareness of this condition and the symptoms 💙💚