I have recently been diagnosed with Behcets after 5 years of investigations and thinking I had Crohns Disease. I am now on Colchicine twice a day and also anti-sickness tabs among a lot of other meds to protect my stomach. The colchicine has been amazing for the last year however last week I had a bad flare which led to me not being able to keep any food down for over a week, really bad ulcers both oral and genital, joint pain in my knee and pain in my lower back all of which are common symptoms for me however this time I also experienced a headache like never before! The only way I can describe it....don't laugh...it felt like I had a spirit level in my head (my boyfriend and dad find this hilarious as I would never know how to use one of these in real life) anyway any time it went off balance the room started to spin making me feel dizzy and sick.
I asked my nurse specialist if there was any link between Behcets and headaches/migraine and she told me No, she also told me to reduce my colchicine which lead to my symptoms becoming worst so I quickly realised she was possibly not the best resource. I increased my colchicine to within the limit my consultant previously recommended and took off the shelf migraine tabs which seemed to help.
I have never had a headache with a flare so this is new ground for me and it was agony.....any advice would be MUCH appreciated!!! Also, I am in Scotland....is anyone else in Scotland and have a good consultant or nurse specialist? Mine seem to know nothing about Behcets....my sister in law is a consultant rheumatologist luckily and was able to tell me to ignore the advice I was given however I would rather rely on the team I have.
Anyways....thank you for reading all of this and thanks in advance for any advice.