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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Upcoming neuro appointment. Scared!


The good news is patients don't die the bad news..
Saw neuro. Thanks for all the help guys.

he took all notes on a posted note...

didnt seemed concerned about anything. Said sueziures are prob mental health issue. I agree but lack of concern worries. I said i was also trying to get an mri for my cci, so i asked what kind of mri he was going to prescribe. Long story short he didnt give me a mri prescription. I told him about my eye socket pain and he said it could be dry eyes and to go see a eye doctor. And neuralgia...i think he said it could be from eye pain. That isnt even possible?

Anyway the tone and the fact he was implying my seizures were psych and my eye pain and vision changes and face nerv pain was from dry eyes was concerning. Soooo hard to get people interested and want to help for some reasom.

he could be right about stress seizures, hope so. Not sure I’m going to get much of a look beyond that.
I'm so sorry this guy is a quack.

Drop this doctor like a hot potato and find someone else. If you have followup appointments cancel them.
Don't waste one more second considering what he said.
Don't give stupidity free rent inside your brain.


IG: @crypt0cu1t
I'm sorry your appointment didn't go well bro. I agree with everyone here; DROP HIM!! He obviously doesn't know what he's talking about.

You need to find a doctor willing to order you the Mayo ENS1. Where are you located?


Senior Member
thanks guys. After talking to a person on reddit, i am farily certain these seizures are actaully sleep attacks. Ie narcolepsy. I was thrilled for a moment thinking i didnt have cfs. Oh the dream of dreams. Bur when i thought of it again, i do have severe pem. I just have to assume i have both : /

i really wish he would have at least explored my nerve pain in my face. I plan on seeing the eye docotr to check eye pressure, a common feature in iih. My pots or something is also going wild atm, very hard to parse all this.

Anyway, yes i am planning on getting a new neuro, but will likely try and get the eeg and mri done from his script. I feel some very strange feelings atm. Feels like my body is breaking down even faster than i can theorize what is taking place, much less try and enact a plan.

if anybody knows, can cci cause narcolepsy? When i am in the shower, i can run water on my neck and my eyes start to shake and i feel i will lose conciseness.


The good news is patients don't die the bad news..
if anybody knows, can cci cause narcolepsy?
Its unlikely. Narcolepsy is believed to be caused by an autoimmune reaction to orexin producing neurons.

Honestly you need to find a proper physician to diagnose what you have. Most if probably not all of us have had to doctor shop until we found someone with an ounce of sense and its very tough (if not almost impossible) to do with a severe level of disability but self diagnosing is not going to work in your favour here.
If its post covid you need to find someone who sees patients with that.
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The good news is patients don't die the bad news..
@Alvin2 indeed. Im working on getting more doctors all the damn time.
I'm not in the US so i can't help you on that front but if there is a way to find someone you can make an appointment with who is dealing with long covid patients that is probably where you need to go.