If I walked in the doctors office and told them I had astrocytoma or glioblastoma, some type of brain tumor, the doctors would take pause. I’m sure if I said I have an inoperable brain tumor they would have no problem giving me the pain medication I need or nausea meds. They would listen and help me treat the symptoms I would live with for the rest of my life. Having a causes pressure to build up in your brain of cerebral spinal fluid and can wreck havoc on many systems of the body. The pressure can press on your hypothalamus and cause body temperature control issues. The high CSF can press on the pituitary glad and cause Addison disease type symptoms, low blood pressure, sudden black outs, heart rate issues, several different problems. If I told the doctor I had a large causing all these symptoms the would help gladly.
So why is it when I go to a doctor and say my brain thinks I have a large and produces the extra csf and causes me all the exact same symptoms above I get no help?
Having IH or PTC is just that. My brain is constantly trying to fight and conquer this tumor all the time but there is no tumor. My brain honestly thinks there is a large tumor somewhere up there and is always in a fight or flight response against it.
All of us with this condition should be treated the same as those with an inoperable tumor but we’re not. Most the time our weight is blamed when in reality the csf build up causing pressure on our hypothalamus could be the very cause of the unlossable unexplained weight gain and is not the cause but an effect of the condition its self. I lost 75lbs and my condition worsened a lot and this has happened with several of us. All of us IH patient should be given better treatment than we are. Hopefully one day doctors will better understand the fact we don’t have daily headaches but head pain and need treatment just the same for it.
IHope for a cure. I hope to be heard and one day I hope to be helped effectively.
IH love to you all 💙💚💙💚💙💚