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Autonomic Dysfunction Community
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Avatar universal

Are these Dysautonomia Symptoms? CSF Leak?

I feel dizzy and breathless...as though the automatic functions of my body are no longer working. I quite often stop breathing when I'm falling asleep and wake up gasping for air. (I don't wake up throughout the night...just went I'm beginning to fall asleep.)

I have a headache almost constantly...it's a dull, deep pressure in the back of my head. I feel best when lying flat. Mornings start out great for me, and then after about the first hour of being awake - the symptoms start to set back in.

It all began when I caught a bad cold - possibly bronchitis (about 2 years ago) I had very violent coughing. I felt an electric pain in the back of my head everytime I would cough. Then began the vertigo and breathing issues.

Now I have trouble doing anything without feeling as though I'm going to faint. Some days are better than others. But there have been zero days since my first major vertigo episode that I have felt really well. It's a struggle to leave the house most days because I feel faint so often. I also have severe weight loss...and cannot gain anything no matter how much I eat. (I eat densely nutritious foods and take good care of myself.)

I haven't yet been for an MRI since the vertigo and breathing issues started but I think my doctor is beginning to believe I'm a hypochondriac.

I have a theory that I may have caused myself a CSF leak by coughing so hard...and consequently developed Dysautonomia-type symptoms. Brain stem compression perhaps?

My doctor laughed and said I Google too much and told me I probably had a panic disorder. I felt like a lunatic walking out of his office. It took me two years of suffering before I finally sought help. (I'm stubborn and believe that most issues eventually resolve.) But now I feel like an idiot and am questioning everything.

I was previously a happy, outgoing, extrovert who loved being around people. Now, I can hardly have conversations with people because I'm so focused on trying to stay upright.

Any insight is appreciated!
3 Responses
4144487 tn?1394479548
Okay first of all you are not a hypochondriac I would seriously find a different doctor. I had been told my whole life that I had panic disorder or was a hypochondriac. and last month I got two surgeries in a row and a serious sepsis infection and now all of a sudden I have pots syndrome... it definitely sounds to me like you have something wrong with your central nervous system autonomic nervous system I would try to find a neurologist or even a geneticist.. don't give up sometimes it takes a while to get a correct diagnosis
Avatar universal
Your first paragraph grabbed me, because it could have been written by me! The dizziness and breathlessness and the part about stopping breathing while falling asleep! I deal with it too and have no answers, been to heart dr, family dr., neuro dr, ENT dr! Nothing, no one can give me a reason why! I also have difficulty swallowing at times, almost like I forget how, or it just don't work when it gets time to swallow. Not all the time, like the others it comes and goes. I'm almost convinced it's anxiety now because of no answers after years! I hope you find a answer, it might help others like me to know what to look for!
Avatar universal
Go to a new doctor, seriously if at any point they laugh off your symptoms they can't treat you any more. The first doc I went to said anxiety and so did many others. "Your heart rate is up when you stand because your anxious" I heard it all. You no your own body better than anyone.
I would recommend going to a cardiologist and getting a 24hr holster monitor, to measure your heart rate over that time. Also getting a tilt table test and treadmill ecg (can't remember the actual name of that test, but it involved a treadmill lol)
took me at least 18months of not feeling well at all to finally get diagnosed with pots. Mine started with a really bad tachycardia upon standing ( 80bpm sitting to 130ish bpm standing) dizziness, brain fog, nausea and generally feeling unwell. I won't say I gets better quickly as I today still feel crap but I helps to no what you have. It's a long road, best of luck.
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