Hi, my name is Bromsgrove11! Struggling with Chiar i malformation type 1

Bromsgrove11

Struggling with Chiar i malformation type 1 . Headache under control but muscle weakness and pain is unbearable. Constantly falling over nothing too. Is this normal as I know so little? 

bg844

Hi and welcome. Your GP is best placed to advise you so you can get the proper treatment as we on this forum aren’t medical experts and it’s against the rules.

Tori_Scope

Welcome to the community @Bromsgrove11 How are you doing today?

Thank you for joining, and for telling us about your situation. It sounds like things are quite tough for you at the moment- is that right? 

As bg844 has said, we can't offer medical advice here on the community. That being said, I know it can be really useful to chat to others who might be in a similar situation to you, or who can relate to what you're going through. I'm wondering whether one of our members, @chiarieds, may have any insight or advice to offer you. 

Do you have support from a medical team? 

Do you have a good support network of family or friends who can help you out if needed?

chiarieds

Hi @Bromsgrove11 - & welcome to the community (& thank you for the tag @Tori_Scope ). Unfortunately the symptoms of Chiari 1 Malformation are many & varied; the headache you've experienced is one of the commonest symptoms, but I'm pleased to read this is under control. Your other symptoms can be due to Chiari 1 Malformation too.

I have Chiari 1 Malformation associated with a genetic disorder called Ehlers-Danlos Syndrome which has also affected other members of my family; I don't have the typical occipital or retro-orbital headache, but do suffer from pain the moment I'm upright. Are you under a neurologist/neurosurgeon or have a helpful GP with whom you can discuss if there's any medication that may alleviate, or at least dampen down your pain?

I can recommend looking at the American Syringomyelia & Chiari Alliance Project's website for more info on Chiari 1 Malformation. Please see: https://asap.org/  There's a lot of resources for patients including videos of past conferences which are very informative: https://asap.org/conferences/past-conference/   Here you'll see one about Chiari headaches by Dr Kula, a neurologist, & another about pain management: https://asap.org/conferences/virtual-conference/2020-conference-videos/  if you scroll down.

Hope some of this helps.