I am a chiari patient but very fortunate for me, I was not diagnosed with EDS. They did say I have some hypermobility in my arms that they could see but not enough for a diagnosis. EDS is a very complex thing and my sympathies are with you in dealing with that with a Dr who is not very knowledgable.
You didn't say you had a chiari diagnosis. Many people with Chiari also have EDS and other related disorders. EDS can cause problems with connective tissue as you probobly already know. And very commonly can cause cranio instability in your neck.
What you are describing with the pully is something I am familiar with. I went to The Chiari Institute(TCI) in New York, and one of the test they do is pull up your head and see if your symptoms are relieved. Then they push down on your head to see if the symptoms worsen. If the suspect instability, they then do a cervical traction procedure which I had done.
They put bolts into each side of your head (of course your not awake while they do that).Then they hook up a pulley to the bolts and add weights. At some point, all of a sudden, the pain was gone for me. Of course when they dropped these weights, my pain came crashing back on me. It fealt like they dropped a huge boulder on my head
This is the determination if you have the instability, which I do. I was told I would need the fusion surgery to help correct this. So when your husband lifts your head, the nerves that are constantly being compressed from your skull resting on them, are freed and you feel relief. But you really need to be carefull. You could do damage to yourself.
They do have over the door pulley systems that you can purchase on line. I paid $20 including shipping for mine. Theres a large water bag that you fill and this does the same thing. You might want to ask your Dr about that.
As far as the other symptoms you are experiencing, these most definately are chiari symptoms. I get all of them and more. The only one I dont have is the weight loss. Although my appetite is decreased and I only eat one meal a day, I've gained weight.
In Canada I know that good care for Chiari and its related disorders is not available. Many from Canada have gone through the insurance to be able to come here in the US for care. If this is causing extreme heart rate issues, you really should seek out someone who can better evaluate your condition.
Here is one specialist on my list in Canada. He is no longer performing surgery but is seeing people for consultations.
If I can help in any way, I'm here for you
Toronto Western Hospital
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