Living with it...

[TheHuntress490]

I am a 26 year old woman with Intercranial hypertension and papilledema and anxiety. My Intercranial hypertension causes severe headaches and migrains 24/7 my papilledema started right after since the swelling and pressure in my head and eyes started... its tearing my eye nerves or muscles causing black spots in my vision. I've had 12 lumber punctures in the last 3 years and almost 6 months.. I've had back pain and neck pain after the lumber punctures.. I have no medical aid. So the state hospital is the place to go, but its useless.. nothing works and every 3 to 4 months it's a new doctor I have to see. I stopped going to the doctors since the medication they give does not help and im getting tired of seeing a new doctor/student every 3 -4 months having a lumber puncture being sent home with the exact same medication that sometimes even makes my head or mood worse. They don't want to put in a shunt.. but for the past year and a half I've been trying to handle it on my own no doctors no hospitals... it gets hard.. it gets inbetween my work, my relationship, my daily activites.. I don't know what to do anymore

[Agora1]

Hi TheHuntress490 I am so sorry to hear how much you are suffering.

I am not a doctor but knew someone with Hydrocephalus who would have

benefited from having a shunt put in. Unfortunately, his doctor gave a wrong

diagnosis of the symptoms being age related.

I feel for you in having to go through multiple lumbar punctures that are not

the cure all. Is there a reason that doctors refuse to put in a shunt. I don't know

if that would help but at least it would reduce the pressure in your head.

I Welcome you to this caring and understanding support group. We may not always

have an answer but know that we do care. xx

[TheHuntress490 in reply to Agora1]

Thank you very much. I appreciate it. Im sorry to hear about your friend. I hope they help him soon with the right diagnosis. The neurosurgeon said he wants to put one in but the neurologist said he thinks we have to keep testing the medication but it's been 3 years of using the medication and it hasn't been working. Higher doses just made my head worse and the amytriptyline they gave me made me feel like a zombie, I did not want to feel like that. I had terrible moods with it. And the azomid they put me on gave me terrible pounding headaches.. so I stopped using them...

[Agora1 in reply to TheHuntress490]

TheHuntress, I hope it comes to a point soon where both the neurosurgeon and

neurologist agree that the time has come in trying the shunt.

I may have no idea myself in what you are going through short of experiencing

daily contraction headaches only interrupted by several monthly intense migraines.

Pain surely takes away the quality of our lives. I am so sorry dear. Please keep us

informed of your progress. I care. :)xx

[TheHuntress490 in reply to Agora1]

Thank you very much. I appreciate it🙃

[gajh]

I don't know what to sat, but I wanted to reach out to you and let you know you are not alone. I am glad you are here reaching out for support. I hope that brings you some comfort.

[TheHuntress490 in reply to gajh]

Thank you. Im glad to be here to support people and be supported.

[hopeforjoy]

I know it's awful to be suffering from a significant illness and have to undergo debilitating pain in the way that you're having to endure it -- I am so sorry that you're having to go through this right now! I hope you have some good family or friends to help you during this.

Just know you can always swing by here and pick up words of encouragement!

[TheHuntress490 in reply to hopeforjoy]

Thank you very much. 🌸