Hello group

First I would like to thank the creator(s) of this group. I’ve read many of the stories and it sounds just like me and after this ordeal I get I’m not alone or delusional.

My story begins a year after I came back from a 15 month deployment I noticed I started having really bad headaches. 2011-2012 I was referred to a neurologist and was DX’ed with migraines, Occipital neuralgia, tension headaches etc. I was give two types of nerves blocks and medication and sent on my way. That’s seem to work out fine. However, in April 2020 I started to have this headache/migraine like none other. I’ve seen my rheumatologist Lupus/ Fibromyalgia and the neurologist a few times. Weeks than months went past and nothing was working. I became almost bed ridden. 3 months in a MRI CT ordered showed nothing. So now you know they really started to blow me off. In six months I had 5 ER visits. Once again treated like I was looking for drugs. I had an appointment with my primary and she suggested I go to a place called the Diamond Headache Clinic in Chicago. ( I’m in the suburbs). On my first visit she admitted into the hospital and did another MRI. Than the news came. You have Chiari Malformation type 1 with the tonsils 1 centimeters mostly on the right. ( end of Oct)

Over the last six months I’ve been experience odd symptoms but they contributed to my pre existing conditions. I kept telling them that NO this isn’t the same. All of a sudden my face feels like fire ants is eating my hairline. I’m using the bathroom every 1 or so like I haven’t used that bathroom all day. I’m experiencing vertigo and haven help me if I bend down, cough, sneeze or anything.

To make a long story even longer I fired ALL those drs and the hospital. Even though I don’t want this condition but with the Dx I feel vindicated.

I haven’t had an appointment with a new neurologist yet because I’m researching with hospital will be able to fit my medical needs. I’m looking at RUSH or UIC. I have a multitude of issues since my return from my deployment and I’m a retired Army Vet. I haven’t made a decision one way or another in regards to surgery. I prefer not to because I’ve had many surgeries in the past and really don’t feel like going through the recovery stage.

Once again thank you for the add.

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You’re most welcome, Jayjay! We’re glad that you found us (but so sorry that you “qualify”).

You are SO not alone or delusional! And when you’ve got a rare condition like we do that’s one of the best feelings, isn’t it?

Here’s how to meet some people: find some threads that you think are interesting, and then respond on it. (Don’t worry if they aren’t active right now.) When you post, the rest of the people on the thread will be notified. It’s a great way to get the discussion ball rolling.

All the best to you


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