Confused about my symptoms

Symptoms and Treatments
1

Hello, everyone!

I was diagnosed with CM1 in 2007, I think. Haven't had any serious treatments, because I stopped seeing doctors then, not seeing any point in it.

I seemed to get by ok until I started working and studying more and more. Despite always being tired I tried to do more and more. I also tried many supplements, teas, foods, but nothing boosted my energy levels. Up until around 4 months ago I had completely forgotten about the chiari(didn't even know much about it).

At the end of July I completely ran out of energy and since then 80% of my days I've been just laying around at home, barely having any energy to prepare meals or wash the dishes.

Now I'm waiting for my neurologists appointment on September 23rd.

I've had so many symptoms for such a long time, that I don't know what is "normal", what to complain about. What should I tell the doctor so that she won't think I'm making it up? I'm reading discussions here and I see most of you have terrible headache and other pain. I have headaches rarely. I know everyones chiari is different, but I'm affraid the doctor will tell me "It's not chiari". Because from what I've leaned reading around the net, chiari makes the most sence.

Here are my symptoms: pain- not unbarable, mostly back and lower part of the back of the head when I sleep. Also, I'm never physically comfortable in any position; that causes some kind of pain and, of course, furstration.

There is allways ringing in my ears, my hearing is way too sensitive, like normal everyday sound hurt my ears. My throat always feels a bit closed up, so I'm having some trouble breathing. I used to choke on food, drinks or even air very frequently, but that haven happened for a few months now. :)

Poor sleep- don't remember when I've slept good. I have trouble falling and staying asleep, because I'm never comfortable. If I lay on my back, it's harder to breath and the back pain shows up, so I sleep on my sides, but then my ears hurt.

My memory is very poor, blurry. The best description of how I'm feeling daily, I've come up with, is- lightly drunk(the dizziness and the nausea, but no vomiting).

The thing is, these symptoms can be caused by many other things, like mental problems. They can also be a mix of chiari, depression and who knows what. I know I'm depressed now.

Do any of you have symptoms similar to mine- without the terrible headaches and pain?

I want to hear your thoughts on my symptoms.

I'm so tired of this all, I just hope I'll get back to working at least 4 hours a day.

Thank you for reading!

2

Hello

This disorder is not easy to understand. Everyone is different. The MRI will show the condition. I have chiari with a wist. My C1 and C2 are in my brain so picture a mushroom. My brain is the mushroom and my spinal column the stem. I have no surgical answers because I am not a candidate. I simply would not make it worth surgery. I have recently gotten disabled at age 50. This came with mixed feelings. Part of me relieved because I is not all in my head and saddened by the reality.

You will go to that appointment and get the answers that have been troubling you. The confirmation will help you to accept the next step. Remember we are all going through it and we re all here to listen and give encouragement.

3

Thank you, this helps!

4

I hope so. The CAT scan And MRI are usually with contrast. Then Xray series. Don't panic you have a net work to answer your questions. I don't have any options with mine. I just got disabled and feel quite uneasy. I have worked since I was 17 and I have to get used to the different pace. :)

5

Hello

I can relate to all the symptoms you are having! I haven't had the surgery yet cause I have mixed feelings about it. I guess its a matter of how much of the symptoms you can put up with. I do have the headaches and pain along with all the symptoms you are having.

I no longer work because I am to symptomatic. I filed for disability. I hope you find the help you are looking for and start to feel better!

6

I have chiari 9mm, but my headaches are rare. I have several other symptoms like dizziness, numbness and tingling, greatly reduced mobility. Find a neurologist and just tell them all your symptoms. A good one will tell you you’re not crazy and will know you’re not making it up. If they don’t believe you, then it’s not the dr you need, keep looking. Somewhere on here I saw a list of recommended doctors. Friends of Ben or something like that…I’ll repost once I find the link again.

You’re not crazy and you’re not making it up…and most importantly, you’re not alone! Virtual hugs…

7

http://doctors.bensfriends.org/doctors/physicians/19/

8

Thanks for the support! :)

What I should have mentioned- I live in Latvia, so I probably won't find any doctor in tis list near my location. But still- thanks for trying to help! I appreciate that.

9

Hi

YES and YES !!!!

I had to stop driving because of the vision problem and I live in Los Angeles which has been fun to get around. Im thankful for Uber! Pain the back is just a given for me at all times! I go back and forth of ringing in the ears to hearing the brain fluid swoosh around.

I just stop going to the DR, I am tired of them looking at me like I am crazy, plus they should pay me instead of me paying them because I end up teaching them. lol

Everyday I wake up wondering what the day of symptoms will be, welcome to a Chiari world.

Hope you doing okay today. If you ever need to vent or talk shoot me an email.

Mandi fromLA

10

Thanks, Mandi, I'll remember that! :)