Chiari Online Support Group

New and have some questions


#1

Hello, Im new to the group and thank you for accepting me. Back in 1999 I was diagnosed with Arnold-Chiari malformation type 1. It was a routine MRI scan as I was getting headaches which were not at the back of the head. The scan turned out clear but they did diagnose me with chiari. At the time the specialist I saw told my Mum and Dad not to worry about it as I was not getting any symptoms. He said loads of people have it but don’t no they have it. So forget it and enjoy your life.

Ok a little bit of background information about me. I’m 34 and suffer with anxiety especially health anxiety I guess you could say that I’m a bit of a hypochondriac to be honest. (I’m currently on antidepressants and have been since I was about 17)

When I was around 18 years old I was also diagnosed with atrial figuration which is a erratic heartbeat. I was successfully cardioverted and put back in normal rhythm. It’s been many years since and I have been absolutely fine regarding that since. I’m still taking medication just to keep the heart in rhythm as a precaution.

I’ve been reading up on some of the symptoms of the condition and wondering if I’m experiencing symptoms or not. I still get the headaches but they’re not normally in the back of my head more the front and sometimes side. The doctor believes it’s tension headaches. My balance is not amazing especially if I were to do a forward roll or something like that I would feel extremely dizzy. The doctor believes this is down to the fact I had labyrinthitis when I was younger which is an inner ear infection which has damaged the inner ear.

Around 18 years ago I started to get something the Doctor called optical migraine. It’s basically a migraine without the headache. I would get visual disturbances in the sense of a patch of vision near to the centre would go fuzzy and I would lose my field of vision. The best way to describe this is if you watch a short video clip which someone has put together. This is exactly what I get. I don’t get it very often thankfully I’ve not had it for a couple of years now. https://youtu.be/qVFIcF9lyk8

The other symptom I have been getting is more embarrassing. For many years I find after urinating I tend to dribble quite a bit. This is definitely worse if I’m nervous. I have had an ultrasound done on my bladder and kidneys all of which have come back normal. The doctor believes it could be due to the antidepressants relaxing my bladder muscles.

I also suffer very badly with acid reflux and IBS again necessary related but thought I would check.

Sorry for the long post and I look forward to your thoughts.


#2

I’ve been unable to control my bladder waking up wet when i do sleep because most time im awake all night just like now im ashamed i dont understand why i pee myself but not everynight.