Falling between the cracks

Hey everyone,

I seem to be falling in the cracks when it comes to my medical care. Recently I have been taken off Gabapentin which was the only pain medication I was on other then Amitriptyline at night. The reason I was taken off Gabapentin was because it wasn't working anymore and I was taking them for the sake of taking them so along with the say so of my neurologist I stopped taking them. The problem being they were never replaced by anything.

I'm on nothing but Amitriptyline at night the reason being because my GP and neurologist have no idea which pain medication will affect my IH or not. I was on Tramadol for 8 months during that time it was making my IH worse and made my migraines chronic, the neurologist wrote to my GP and scolded him for putting me on Tramadol and since then my GP has been reluctant to put me on anything else.

The people who will know what medication will affect my IH or not is the pain clinic. The pain clinic is designed to help those with chronic pain manage their pain and get their lives back. They study which medication does what and what medications can coincide with each other and cater medication for a specific patient. The pain clinic would be an ideal place for me but the referral cost's to much money.

Yes my care comes down to money. With the government's new shake up with the NHS the hospital can't do referrals, there is a new policy stating that consultants can not refer to another consultant. My GP is refusing to send me to the pain clinic because it cost £500 for the referral and he just doesn't see that I'm worth the money. He said to me that he can do all the things the pain clinic can do but when I asked him to prescribe me something for the pain he said he needed direction from the hospital and started backing out of the conversation mumbling something about the hospital needing to treat me and find out whats going on.

Although I do agree with him I need help in the mean time with my pain. There is only so far my pain barrier and determination can take me. I have a high pain threshold but at times I really can't cope with the pain and end up in A&E or laying on my bed crying wishing I could die. I need help, I can't keep falling through the cracks but there's nothing I can do. The government has already taken the PCT away from our area so there is no one to complain to, there's no one to control the GP's. I'm stuck trying to convince the GP that my pain is worth the money and referral to the pain clinic.

Yesterday (11/05) I ended up in A&E due to high pressure from the IH, I ended up having another lumbar puncture. My opening pressure was 35 and refusing to go down it toke them at least 30 minutes to get it down to 18. Its been only 5 months since my last one and again they had to rush to save my eye sight. I need help with dealing with high pressure headaches when I have them and dealing with the other neurological pain.

All I want is some help is that to much to ask?