Chiari Online Support Group

Head rushes

Hi everyone, I am brand new to this group. I have had strange neurological symptoms for about 15 years and was just diagnosed with chiari malformation about 1 month ago. What is really bothering me is the feeling of blood rushing to my head when I move or even turn my head. I also hear it in my right ear at times too in the way of pulsatile tinnitus. Does anyone else have this? I am feeling glad to have a diagnosis to explain symptoms but have had such a hard time with my toddler aged son. I can’t pick him up or play with him like I would like. I am glad to have found this support group!

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I am new as well. My 11 yo daughter was recently diagnosed and describes most all of those symptoms. I’m sorry you’re experiencing that too. Prayers to you and all of the members :purple_heart:

Hey Memes and myangelface,
Welcome to the Ben’s Friends Network.
Many of us have had ‘strange neurological symptoms’ that either weren’t diagnosed or were misdiagnosed for many years. Within the neurological arena is seems all too common unfortunately, even after being diagnosed some symptoms were minimised by the medicos. ‘Ohh that’s not related…’ when we know darn well it is.

Post neurosurgery I had to adapt to be able to do certain tasks. Before hand if I dropped something I bent down and grabbed it. Now, if I do that, I stand up get all dizzy, nauseas and (at times) pass out, finding myself on the floor. I’ve found I can’t get my head lower than my heart. I now have to bend down with my knees, preferably near a wall, so that if I get all dizzy I can brace myself coming back up. Sometimes I can stand up no problem, other times dizzy, so the wall is more ‘Just in case’.

I have had to learn my new limitations. Don’t get me wrong here, I want things back to the way they were before and believe me I’ve tried to get back to before, but my body/brain has shown me that doing that makes things worse. I needed to adapt to be able to function.

I’d recommend you self monitor, keeping a record of symptoms, times of occurrence and the activity you were doing at the time. This will help show any pattern and if you notice a change or you are concerned, get to a dr.

Merl from the Moderator Support Team

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How interesting that this started after surgery. Does your doctor have an explanation??

@ModSupport Merl, please see response and question above! Thanks!

Hey Memes,
Sorry I didn’t respond earlier but I’m in Australia, so our time zones are a bit different.

Explanations?? Ohh I’ve had numerous opinions. The surgeon says “Well, it’s nothing I’ve done…” Each neurologist has their own theories with every thing from nerve pain to cervical dystonia to ‘It’s all in your mind’. I’ve trialled all sorts of meds from heart med for blood flow to epilepsy meds for regulating the electrical messaging to psych meds. None have been my ‘key’.
I’ve trialled a bit of everything, if someone suggested a theory or a remedy, I gave it a shot, but still no joy. Don’t get me wrong here, some things did help, for a while. Hydrotherapy is good. Nice and very relaxing but it doesn’t cure the headache. I tried Botox and yes, it relaxed my neck, But my neck is not the source of my headaches, so very little medical benefit for me (although I had a nice wrinkle free neck :slight_smile: I just had to walk everywhere backwards to show it off :rofl: ).

I have to say here that of all of the differing diagnosis and treatments I’ve gone through the closest thing to an answer I received “Well, you’ve had multiple brain surgeries, what do you expect? Obviously you’re going to have side effects…”
At the time I thought the Dr was damn rude, but the reality is… …He was right.

Merl from the Moderator Support Team

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