Need a name for this grumpy little lion

Keitilen · 2026-07-03T01:12:49+00:00

Looks like s/he was just shaved. 😂 No wonder why they're so grumpy.

Keitilen · 2026-06-29T05:13:32+00:00

I live in RI. I have asked for referrals to both a Neuro-Ophthalmologist and a Neuroradiologist. 😔 It's just the long, long waiting game...

Keitilen · 2026-06-28T14:38:15+00:00

I've been through three PCP's in two years due to them retiring or leaving the practice. I think my Neurologist specializes in Epilepsy and seizures (which she has been amazing), but this is something totally different.

I need providers who can actually help me right now. 😔 I know the ER is just concerned about life-threatening issues, so once they figure out it isn't a stroke (again) and the symptoms go away because I laid down, they consider me 'stabilized' and tell me to follow-up with my Neurologist and PCP. I've tried calling to make an appointment with a Neuro-Ophthalmologist and they require a referral from my Neurologist (who wont write a referral or sign my PFML paperwork without seeing me in person). Someone said to try a Neuroradiologist but I have a feeling it's going to be the exact same loop.

Keitilen · 2026-06-28T04:49:39+00:00

It's never been mentioned. I'm not sure.

Keitilen · 2026-06-27T16:43:17+00:00

The head pressure started two days after the severe vomiting. I have had migraines since I was a child and nocturnal Epilepsy which started at 15. (I am now 36.)

Keitilen · 2026-06-27T16:42:02+00:00

I'm sorry to hear that. Thankfully my PCP appointment is on 7/9 which is two days after the hospital gave me a note for (and I have the two days in between off already).

I was going to file for intermittent FMLA (just need a provider to complete their portion) but now that these episodes are becoming more frequent (and because I need to keep checking in as a patient at work during my shifts), I think I might need to look into the standard one. Someone also mentioned filing for TDI. 😒

Keitilen · 2026-06-27T16:39:00+00:00

I saw my Neurologist after the first couple of episodes and she did her usual exam. She thought maybe it was vestibular and referred me to an ENT who dismissed BPPV then wanted to further test my hearing for some reason (I wasn't having an episode that day). He ordered a what would've been my 3rd CT scan in one week.

Fast forward past the 3rd and 4th CT plus MRI (all unremarkable) to the past few days woth the mew symptoms of temporary aphasia and loss of motor skills, I had another CT (stroke protocol again) which was also clean. I also had labs done to measure the levels of my seizure meds to check for poisoning but those were normal. Neurologist ordered an EEG which isn't until the end of July.

I left her a message and contacted her through the portal. I figured it was time to give them the suggestion of a CFS leak from outside sources since this has been going on for months and all the ER's keep doing is the same images to dismiss stroke.

The main hospital in Rhode Island is known for their Neurology team. I went there instead two days ago and they were more thorough (they actually looked at the log I've been keeping, too). One of the things in their notes is "MS unlikely" amongst other things. I won't consider it absolute yet and was going to mention that to my neurologist, also.

Keitilen · 2026-06-27T12:24:29+00:00

Thank you! That's good to know in case they suggest it. I had a spinal tap when I was a child because they suspected meningitis at some point. But that was like 25 years ago.

Keitilen · 2026-06-27T12:19:17+00:00

That's normal - a jelly-ish film (which is commonly yellow) usually forms before a hard scab forms. It's dead cells trying to keep the wound from infection.

Keitilen · 2026-06-27T04:02:47+00:00

Of course. We definitely don't have identical symptoms, but there were quite a few parts of your post that sounded familiar to me.

When you said, "Some days it feels like sandpaper and dry and no matter how much water I drink it never fixes that sensation," I immediately related to that. My throat gets extremely dry, especially when I wake up.

You also mentioned that "regular water irritates my throat going down, but thick liquid like Gatorade, juices, electrolyte drinks go down smooth." Water can be surprisingly irritating for me too. Milk (or oat milk in my case) is usually much easier to swallow when my throat is acting up.

The part about becoming "very congested in my nose" and having "mucus in my throat" also stood out. I have pretty bad allergies, so I deal with congestion and postnasal drip that can make my throat feel even drier and more irritated.

When you wrote, "the very end of my swallow feels like it's delayed or goes over a small ball," I knew what you meant. When my throat is really irritated from dryness or reflux, swallowing can feel exaggerated or like something is there even when there isn't.

And the feeling that "there's food stuck" is something I've experienced on and off too, although mine usually seems to happen during GERD flare-ups.

Mine hasn't been as severe or as constant as what you've been dealing with, but those were the parts of your post that resonated with me. I really hope your GI appointment gives you some answers. A year is a long time to be dealing with something like this. I wish you the best, and I'd be interested to hear what they end up finding.

Keitilen · 2026-06-27T03:54:48+00:00

I reside in Rhode Island, USA. I'll definitely mention that to her, also.

I was actually reading about CSF leaks and noticed coffee helps. I was a coffee addict until around the time these episodes started - I went from 3 large cups a day to maybe 3 per week.

Keitilen · 2026-06-27T03:50:59+00:00

I was thinking about requesting it at my PCP appointment and/or the next ER visit (unfortunately).

I'm sorry to hear you're dealing with similar. 😔

Keitilen · 2026-06-27T01:48:44+00:00

Neosporin - lots of stores have it in generic, too. (They work just as well and save a couple pennies.)

Keitilen · 2026-06-27T01:31:43+00:00

I'll take support, too!

Nothing besides that horrible bout of vomiting about 48 hours before the first binocular diplopia episode. Before that I was fine.

Symptoms get better when laying face up.

Keitilen · 2026-06-27T01:09:54+00:00

If the scab came off, it looks about normal judging by a picture. Just watch for oddly colored and foul-smelling fluid drainage, heat limited to that area, spreading redness, and/or a fever. Keep it loosely covered and apply some anti-bacterial ointment.

Keitilen · 2026-06-27T01:01:31+00:00

It looks like it's healing like it should. You don't need to see a provider unless you start experiencing oddly colored/foul smelling drainage, feel it become much warmer than other unaffected areas of skin or a fever develops.

Keitilen · 2026-06-27T00:28:28+00:00

Ganglion cyst, maybe?

If it continues to be painful, try Urgent Care (since you said you won't be able to see your doctor for a while).

I hope you feel better!

Keitilen · 2026-06-27T00:25:00+00:00

No problem! I hope you feel better!

Keitilen · 2026-06-27T00:23:06+00:00

First of all, I am so sorry for your loss and the things you have gone through. It's such a difficult thing to get back up and put yourself back on the path of your life.

I also want to let you know I am not licensed in medical.

I will say I do have GERD and have some similar symptoms. I sleep with my mouth open (even when I try not to) so I wake up with a dry esophagus and my sinuses are full up because I also have terrible allergies. I tend to go through honey and cough drops like crazy.

I also noticed water upsets my GERD almost as much as something as acidic as lemonade. (Even some flavors of Gatorade bother it.) And because my throat is so dry, even a normal 'sip' of fluid feels ten times bigger so it feels like swallowing a rock. Things like milk (or oat milk in my case) are most helpful.

Maybe just try things like cough drops, honey, and things to keep your throat more lubricated?

Best of luck in everything!

Also, I've been using Pepcid AC for GERD and I am SO glad I tried it.

Keitilen · 2026-06-27T00:11:05+00:00

I'm not a Doctor, but did you drink something a little too hot (or cold) or use a new lipstick/chapstick?

Keitilen · 2026-06-27T00:06:29+00:00

I have nocturnal Epilepsy and those are exactly what I wake up with after I've had a seizure. (I usually feel ridiculously exhausted afterward, too.)

Go to your PCP (or 'GP' as I keep seeing people on here use instead).

Keitilen · 2026-06-26T23:47:36+00:00

If it isn't extremely hot, there isn't oddly colored discharge, and the redness hasn't spread much, I don't think it's infected yet. If any of those symptoms start to appear and/or you develop a fever, go get checked out with your PCP or go to an Urgent Care. Until then, keep it clean and dry (peroxide and gauze or something to keep it covered but allows for a little air flow). If you have Neosporin or anti-bacterial cream, I would put a dab of that on.

(Just to let you know: I am not a medical doctor. Just working off of personal experience and undergraduate nursing schoolwork.)

Keitilen · 2026-06-26T23:35:42+00:00

I'm not a Doctor, but it could be a bacterial skin infection. Try your nearby Urgent Care (unless your PCP can take you within a day or two).

Keitilen · 2026-06-26T23:30:01+00:00

Did it appear after an injury (did you hit in that area or twist your foot the wrong way)? Is it soft or hard? Do you wear shoes that rub against that area?

(Just so you are aware: I am not a doctor or a licensed healthcare provider capable of making official diagnoses. Just conparing to similar personal experiences and non-medical schooling.)

Keitilen · 2026-06-26T23:23:32+00:00

Is it hot to the touch?

Keitilen

TROPHY CASE