Idiopathic Intracranial Hypertension

Hi, my name is Christymstone. I'm here because
I am just looking for liked minded people to share and join in on the journey#MightyTogether #Anxiety #CeliacDisease #IdiopathicIntracranialHypertension

So. I'm having investigations done because a brain MRI showed increased cerebrospinal fluid pressure. This might mean I have idiopathic intracranial hypertension however I'm aware that the MRI alone doesn't necessarily mean I meet the full criteria. I was referred to a Neurologist. Their triage assessment process takes 30 days which of course I was worried about just because I didn't know if they would accept my referral or how long I might then have to wait for the appointment. Thankfully I just received a call and I've got an appointment in two days time. This is amazing! However I'm also now worried that they view this referral as particularly serious and what that might mean for me. Overall I'm relieved to have the appointment. I'm very grateful for access to a Neurologist.

I’m scared of the future. I recently had bad palpitations that landed me in the ER. Everything came back normal except my EKG. They suspect POTS or SVT, but with having Idiopathic Intracranial Hypertension POTS is a common diagnosis alongside it. Plus, it’s worse when my pressure is high.

I also meet the criteria for EDS hypermobile, which would explain the IIH and POTS.

This is good news and bad news. I struggle with health anxiety so much, especially since I went so long going to doctor and not being heard. I was told I’m making it up, and it’s just anxiety.

I feared for so long that something catastrophic would happen because doctors didn’t listen to me.

Now I have to wait till 12/6 to see my PCP and go over the POTS and EDS diagnosis. Then what next?

I’m bombarded with constant intrusive thoughts of fear of what’s next for me. Feeling like a failure because I can’t work, or cook or clean properly. Having such high hopes for my education and career. Now, I don’t know what my future looks like. That’s terrifying.

I just want to be okay. Not great and not bad. Not perfect but not suffering. Just okay.

I'm new to this app and I'm hoping to get some help with my multiple chronic illness. I have Endometriosis, idiopathic intracranial hypertension, migraines, and fibromyalgia. I've had a hysterectomy and have had two rounds of botox for the migraines. I just learned that Endometriosis can travel throughout the body and I'm hoping someone here has had experience learning where / how to find Endometriosis in other parts of their bodies. As all efforts to stop my daily headache/migraines have been nearly useless I'm hoping to rule out Endometriosis in my brain.
Any help or knowledge will be greatly appreciated.

Thank you!

Hi, my name is If_I_Can_You_Can_2. I'm here because
I had found out after all the symptoms I was having, that I have IIH and other issues and I am scared what might happen next and I am interested on researching about it!#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #IdiopathicIntracranialHypertension