"Feel let down and ignored and not involved in my care."

I had a shunt put in as an emergency after going blind in September 2022, my care during this time was fantastic. I did have a few headaches afterwards but was glad when those settled.

Everything was fine up until I went on a massage chair in June 2023 and ever since this point I have had nothing but trouble relating to headaches.

This current episode of headaches has now reached 22 weeks - every single day headaches for the whole duration, they are 7/10 all day, but much worse on bending, coughing, waking up from sleep which are all signs of pressure (I know this because I clearly have the diagnosis of IIH).

I have been told since my papilledema is gone there cannot be any issues. Other symptoms have included numbness/involuntary movements on my left hand and leg, tinnitus and severe vomiting when standing for longer periods most recently.

Multiple scans in this time have shown persistent low pressure (I know this as I have now received my medical notes however the doctors have not told me any of this), and this current headache resolves when I lie down which is now progressing and different but still no way of getting help.

I believe the shunt is over draining and unsure if pressure is fluctuating between too high and too low but no investigations are/have been carried out except the previous scans.

I have had to present to hospital multiple times despite trying to avoid it however I cannot suffer the pain any longer and am genuinely worried about these symptoms.

I have been told I am not allowed any analgesia due to it making the pain worse and it is just something I will have to live with - how can that be possible without exploring other possibilities?

I have had treatments but these have all been focused on migraines, recently including Botox which has not helped up until now and when asking if I could have investigations relating to the pressure for example an ICP bolt I am firmly told no due to risk.

What happened to a patient being involved in their care and having a voice? I was recently told I would see neurology on my last admission, I waited 2 days in hospital where the medical team told me they would come before they decided they did not need to see me and I was told not to come back to hospital as admissions are not of benefit to me -

I have since obtained all medical records relating to recent admissions and will be taking the matter further. I wrote a 2 page detailed letter in February explaining how desperate I was for relief as I am a full time worker, also a mother and unable to cope anymore with the pain.

I did not receive a reply and that is now 2 months since handing the letter in, also confirmed with secretary that the doctor from neurosurgery had received it.

I have contacted neurology/neurosurgery secretaries several times with no phone call back. I am bedbound most days with me having to take more and more time off from work, also been suicidal due to the toll this is taking on me.

At the very least I would like contact and to have an opinion on what care/treatment I should receive whilst taking the risks into consideration.

I never suffered from severe headaches prior to the shunt (yes I had background headaches as a result of the high pressure but not to this extent). I feel very let down when all I wanted was answers.