I dont even know where to start with my whole story tbh from about 18 i felt weird pins and needles and palpitations in my arms and legs.I went to the doctors several times looking for answers and wasn't very successful,most of the time I was just written off as a nervous person who was worrying about nothing.
When I was 19 I eventually had an mri and was found to have arnold chiari type 1 and was referred to a neurologist. I was relieved at first and felt like I had a label for my problem and that I could get help for it, and around that time I joined this website. However when I went to the neurologist I was completely dismissed and they said there was nothing neurologically wrong with me.
I still felt weird in myself, but I tried to forget about it and just carry on the way I am.
Then one day when I was 20 I collapsed and was taken to A and E the paramedics said it sounded like I had a seizure but the doctors eventually just said that I merely fainted.Then around the same time the following year I collapsed again this time I was seen to be fitting on the floor and I bit my tongue. This time my symptoms couldnt be ignored and they said I had a seizure. I had another MRI and again the chiari malformation was noted. Im now due to have an electroencephalogram on wednesday and I hope maybe they will be able to figure out whats up with me...but im not gonna get my hopes up.
Im just wondering if anyone else knew of a link between chiari and epilepsy?
Im not even sure if the chiari malformation is the underlying problem or not and I appreciate theres others on here with far worse situations than my own.I just feel very stressed about my health and the moment ,I wanted an outlet so I chose this website XD and I figured if anyone knows about a link between epilepsy and chiari u guys would.
There is not a solid answer. The upcoming EEG will help find one. They may have to do more than one EEG as there are several different kinds. There is a condition called "cerebellar fits" that is associated with chiari and in younger kids is sometimes mis-diagnosed as a form of epilepsy. The EEG will help sort out the source of your siezures. I hope you keep in touch. It is pretty scary at your age. These things do sort out in time, but the waiting is horrible isn't it?
Thanks for your reply, I hadnt heard of the term cerebellar fits before so did a bit of googling and now feel a little better informed so thanks for that.
Yes the waiting is hard and I just find the whole process draining its like every time I think Im close to having an answer, a consultant some where along the way decides there is nothing wrong and then im back to square one again.
I wasnt allowed to drive for 6 months. Thanks for being so empathetic I will try and come back here when I can. TJ1 said:
There is not a solid answer. The upcoming EEG will help find one. They may have to do more than one EEG as there are several different kinds. There is a condition called "cerebellar fits" that is associated with chiari and in younger kids is sometimes mis-diagnosed as a form of epilepsy. The EEG will help sort out the source of your siezures. I hope you keep in touch. It is pretty scary at your age. These things do sort out in time, but the waiting is horrible isn't it?
Drop attacks are common with Chiari along with POTS. Before my decompression it would happen about once a week. After, I've noticed it's when my iron is low, and I'm not taking my vitamins correctly. (missing a whole week).
I also have EDS, which causes my body to not absorb Vit. and Nur. properly.
Your testing should add some light to the subject,
Chiari causes so many issues, I would get with a Chiari Specialest.
Best of Luck, and Try to stay possitive. Most of us have gone through this and know there is no one answer. We just have to keep asking questions.
First, it does not sound like you have epilepsy. And, while you will need to go through test to see if it is Chiari or something else, your symptoms are consistent with Chiari. Remember that Chiari is not a 'disease' or even a condition where 'causal' connections are know accurately; Chiair is a 'syndrome' which means only that a group of 'symptoms' are associated with Chiari (but could be associated with something else). Truthfully, the best way to deal with Chiari is to focus upon the 'symptoms' and not the cause. I find that with the medical profession generally, once they have ruled out what is obvious to them and they cannot pinpoint any cause, it's best to deal with symptoms.
Also, Chiari is a little bit like epilepsy in one sense. Epilepsy an electrical 'overload' of the system, most often the result of electrical connections going wrong. Well, Chiari creates the same thing at times which is why there can be confusion. But, as epilepsy also presents itself with other obvious symptoms, and they found you did not have these, then it's not epilepsy but Chiari syndrome -- or, maybe, something else. So Shy Girl, get the testing but if they eliminate everything that they think it might be, it's like symptoms of Chiari.