Did you sing that - if you're my age you did!
Well, if you're wondering what is being re-started - well - the medical journey of the 3yr, 2 month journey since September 19th 2019 of facepain! It has been hard decision and a bitter pill to swallow but seems the only sensible thing to do when not even a top ranked Clinic won't listen! Only person who has done any research, thinking and working into this . Is Alan. He's studied and read every journal he could find, listened to every symptom, linked it to every disorder, pressure headaches , weather changes / altitude / problems that I have, does it have a connection, is it food related, environmental, drug related, ANYTHING .. well..
1 diagnosis - sinus - need 2 nose surgeries
4 neurologists/neurosurgeons say Atypical Bilateral Trigeminal Neuralgia - wont /can't treat - Covid 1 neurologist says SPG blocks only
1 neurologist says - its a headache - hears a pill
1 Radiologist - thesis on Spinal Fluid / Brain Fluid / Low BP / Bradycardia / Body position / pressure headaches links
And a partridge in a pear tree .. so should I say a husband who actually wants to get me fixed properly!
The past 2 months the pain has increased along with the dose of Topiramate to the maximum , as instructed by the Mayo Clinic Neurologist in August and bloody hell Baldrick - I could not last 3 days at the max strength - I was on codeine 24-7 to try and dull the intensity of the pain my face was in plus the throbbing, pulsing around and behind my eyes and nose was not subsiding. I wrote my 'Care Team' at the Mayo Clinic -(after another call from the Mayo Botox people as I typed and got them to stop calling me as I am refusing that thankyou very much - 7 injections into my skull every 12 weeks!) and told Dr Whealy basically help get me off this drug - it's not working, let's find out what's causing this to all to happen, let's explore more PLEASE. we have told you what we think is the problem , lets try? I haven't laid down to sleep for 3 years. I cannot bend down, the pain intensifies each time. Something is going on for this to "cause" this Back and forth for a week - Dr Whealy has read your records stay on this dose for a few weeks so it balances out There is no medical proof of Spinal fluid balance, brain fluid balance, low blood pressure, bradycardia... You have a daily headache. {After our last conference call he was interested in this , so was the radiologist who took my Spinal Fluid Pressure readings in March at The Mayo Clinic for the Cisternogram and chatted with Alan about this for quite a while and did his thesis on exactly this link with facepain} Um - No way my pain level is a 9 - get me off this drug - I cannot handle this pain how do you expect a person to live like this? Get me off this drug now - we know there is no medical journals and no testing but Dr Whealy has read your records and recommends"this" drug.. it was the drug he started me on! (bad side effects - you can imagine my reply - especially adding the flavor of being on codeine and in pain - you get the picture) they're not listening whatsoever
Dr Whealy Has read your records and recommends Botox and another injection med and another anti-depressant drug - oh and drug rehab for me being on codeine ! What actual F
I have not replied to this last message obviously because I was more insulted than anything.else The fact it was Botox again. listed 2 drugs that I had to research and oh and just trust me take them I'm a Mayo Clinic Neurologist aka Ego - God Complex .. throw drugs at me instead of trying to actually find out what is wrong - find the cause then treat it and then relieve the symptoms
On Tuesday - maybe / hopefully / weather / roads open depending - I see Dr G - to start the process all over again. Find a new Neuro - someone who specializes in facepain - NOT headaches - laying down / bending down .. so here we go again I'll update this as I go instead of more blogs probably
but the end thing is - dont wait for the doctors to treat and fix you - only one person can - and thats you - waiting and having drugs thrown at you while you get worse - whats the bloody point? Get up and do it yourself because they do not care one Iota about you whatsoever Be it your brain, a back, a finger a whatever it is - the longer you wait, the worse it will become and the worse it will be get it back to some form of normal functioning unless you take control of your body before it's too late to do anything about and spend rest of your life in a wheelchair and a dependent vegetable ! Im not being one of those after everything else we have been through and going through still thank~you very much and Alan says - we are not British anymore ! we have a choice now it's our lives at stake not theirs and you cannot put a price on health - ever!
oh - i went gluten free - i was tested for Coeliac a few months ago - even tho negative, I am Gluten intolerant - since then the bloating and reactions have stopped but as I hardly eat anyway and just snack anyway no big deal. but with the painkillers and IBS-C symptoms - they've all stopped Yay - oh and my weight is excellent too! :D
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