Thank you to you both so much. I hoped that one or both of you might reply, so I am elated to hear your advice. In fact just an acknowledge from someone that you are not a liar or that you are not insane is amazing to have.
A lot of the information that you have asked about I currently do not have/know (eg pseudo-tumor cerebri, LP pressure). I’m not sure how it works in the states, but I don’t receive my scan/ hospital notes/reports unless I pay for them. I am seeing a new dr and paying to get the reports and scans now. I have realised that if you’re not a ‘crier’ or melodramatic, if you just deal with your pain then nobody takes your seriously- make a fuss people, being tough doesn’t do you any good- that is my tip of the day!
As for the book, I would very much like to read it- can anyone direct me to it? I managed to get the ‘Your eyes and EDS’, but not the other one.
Also, Diana I feel as though I may have unintentional misled you. My fantastic ‘pain specialist’ (named by me!) is very practised in dealing with pain. He is not a doctor, but a cranial osteopath. He is very interested in ‘biomechanics and the physiology of pain’ (his website) and he has worked on lots of people from new born babies to trauma victims. He specialised particularly in paediatric and neonatal care. He is experienced dealing with chronic pain and just meeting him made this evident, but I’m afraid this may not have been the doctor you might have hoped for. He is unable to prescribe me medication so I am seeing my gp soon to see if he will prescribe some diamox.
Thanks Barbara for your wealth of knowledge on chiari and the cerebellar tonsil. I am looking forward to getting a second opinion but worry that I won’t be taken seriously. I will ask about :
My CSF flow/pressure
The opening pressure of LP
pseudo-tumor cerebr
Brainstem compression
Fingers crossed.
Thank you ladies. May this message find you on a day when you are feeling ‘okay’.
P.s thank you Diana for all of your research and videos – especially the one on depression ,as having somebody to tackle the problem headache is oddly comforting.