All of our stories are the same, in many respects. Most of us remember the day and time that our headache began. Many of us have been suffering for years with no relief.
Our lives have been changed. NDPH has cost us all something. A hobby? A job? A spouse who couldn’t stand by and support us through the pain?
And not all of those suffering with this have a dramatic story to share. Many just suffer in silence and push through to the next day. And the next day after that.
The following is the first in a series of stories that I will be sharing here on the blog and ultimately in my book about NDPH.
Good evening from the outskirts of London.
I first became aware of continuous headaches at the beginning of 2011 – and put it down to at the time, lots of complex eye surgery (retinal detachments cataracts etc). After spending thousands of GBP on spectacles with tints, prisms etc a consultant at London’s Morefields Eye Hospital suggested I seek other causes for the headaches.
After an appointment with a neurologist the specialist pretty soon diagnosed NPDH.
My version of this gives me orbital pain – behind both eyes and is largely with me all of the time day and night.
My neurologist has tried the usual - spinal scans, brain scans etc etc and introduced me over the years to a catalogue of drugs – Mirtazipine, Topamax and more recently Nortriptyline (only managed to get up to 20mgs – lethargy effects were too great).
During the last few weeks i have started to develop dizzy spells and light headedness that were not part of the NPDH over the years – and i have taken a decision to try to stop the anti depressants like one of your other contributors – dizzy spells etc are really bad but i fully expected to go through this.
Can I ask if any of your other contributors have also had a gallbladder infected with gallstones? – I have this currently and are awaiting a decision to remove my gallbladder – but us NPDH sufferers are always trying to find a link to their headaches - however small that might be.
I design washroom partitions as my day job and came up with the solution for London’s 2012 Olympic stadium – I thankfully, have very understanding colleagues who allow me to put increased effort into the good days and essentially write off the really bad days.
For all of your contributors that are in relationships – naturally it is our wives, husbands, girlfriends, boyfriends etc who have to suffer just as much as us and let’s hope that the medical profession – somewhere down the line can make some breakthroughs with this terrible disease.
Do you have any thoughts or recommendations to share with Kevin? Have you had gallbladder issues related to NDPH or a medication you took to treat it? Please share in the comments!