Feeling like someone was stabbing my right eye with a sharp knife. I ended up in hospital and being seen by a neurologist. he is treating me for ? hemicrania or maybe sinus venous thrombosis? I had an MRI brain yesterday with contrast to look at the blood vessels. I am taking indocid with some help but pain is still there to a degree. I have a history of clots in the feet and already take a blood thinner, eliquis, clopidergrel, which is like aspirin, and hydrea. Has anyone else had a similar… read more
No problem, yes & please do keep us informed as to those findings to Chris...
Best
Steve
Thanks Steve appreciate this advice and will definitely discuss with my specialist. I will also follow up and let everyone know the outcome of my contrast MRI in case there was a venous cerebral thrombosis. It has been a horrible few weeks
G'Day Chris... :-)
My name is Steve from Sydney, Australia... I am 64yo, Post ET / MF w/ CALR Type2 "Driver" mutation, & ASXL1+ (high risk mutation), & just for good measure, I also have a rare type of Von Willebrands Syndrome (VWS), which simply means my very high Platelet regime almost always has me at risk of having ever more Transient Ischemic Attacks (TIAs - minor brain strokes).
Not sure I can offer much more than empathy/sympathy... Unfortunately, each us has a very specific type of body chemistry. Hence, each of us can & often do react quite differently to certain medications...
However, and all of that said, HU, (in my view), is a very harsh and very old type of oral chemotherapy drug. It can & very often does show up w/ a great variety of differing side-effects, (from one person to the next).
HU was intolerable for me, and these days I am on Ruxolitinib, and apart from keeping a very close eye on my Platelets, I am doing quite well really, when compared w/ a great many others etc.
For example, this month I have almost cycled 1,100km, my diet is anti-inflammatory & I do find that higher intensity exercise really helps be remain clear -headed, when compared w/ the converse of course... (Only started Cycling c. 3-4 years ago...). 8-)
In Australia, I run our own MPN 'NFP' Forum, and many of our members have suffered terribly over a great many years because of their reactions to HU!
In most cases now, those same MPN patients have all moved on to Pegasys' Interferon, and all of them are having stunning results, (especially when compared w/ their previous HU experiences).
My best advice would be to talk w/ a dedicated MPN Specialist, about changing your Med's to Pegasys'. If it works & your headache problems subside soon after, then it might well be because of the HU (?) Until then of course, this is just a pet-theory of mine... & the jury is still out for the moment, BUT... if it works... New "Quality of Life" returns to the Chris Barnett show... ;-)
Best wishes Chris & I hope you solve your issues soon...
Steve
Hi all and thanks to everyone who responded. Had my review with the neurologist and the MRI showed nothing. I have been diagnosed with trigeminal Hemicrania. Headache has finally subsided. Cause for this is unknown but they are often referred to as suicide headaches! I have good old fashioned Indocid to take and it works. Thanks for your support xx
Will get answers on Wednesday x thanks SEMH