Hi, my name is Bromsgrove11! Struggling with Chiar i malformation type 1
Bromsgrove11
Community member Posts: 1 Listener
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?
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Comments
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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.0
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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?0 -
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.0
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