u/Virtual_Honeydew4414

Hi, I’m mid diagnosis at the moment. My mri has come back with positive with IIH but I’m having the lumbar puncture later this week for details. I’m just having weird symptoms and I just don’t know how they can say this is an urgent situation but the soonest appt with a neuro-opth is 2 months away and with a neurologist it won’t be until next year?? I don’t know at which point what I’m experiencing is something I should classify as go to ER type emergency. But last night I noticed that one side of my face is droopy and can’t be moved as much as the other side. Even when I relax my whole face it doesn’t match. Eyebrows are off and my eye looks smaller like I have keratoconus, which I don’t…. What can I or should I do? Can they even help at the ER until I see the doctors I need?? Having my face affected has really just freaked me out.

I have a lot going on right not, but I want to try and isolate this issue from the others.
I don’t know if it’s relevant but I did have hip surgery early June. This is the timeline.
I started slynd like 3 weeks before my surgery early June after switching from another birth control that gave me migraines. A week before my surgery I began to spot bleed, but I wasn’t on my period as determined by the pills yet. I stopped bleeding surgery day and for a couple days after. Then 3 days after I started spotting. It was about a 1-2 teaspoon a day, but the annoying part was that it’s generally chunky and clots. Then fast forward to 3 days ago, and I’m finally on the blank pills and I went from spotting to bleeding heavily 5-6 tbsp a day (I know the amount because I switched to my cup and had to empty it 6 times yesterday).
I’ve read that spotting can happen for a while on birth control because it takes time for your hormones to normalize, but at which point should I be concerned and contact my ob? I don’t have much experience with oral birth control. I was on the copper iud prior and never bled this much while on it and all my cycles were on the clock on it.
Btw I do have pcos/pmos.
I don’t know if it’s related but I also have recently been made aware of some possible neurological issues that have ultimately caused incontinence and swollen eye nerves, but I have had the MRIs and have a neuro ophthalmologist appt coming up.

Hi, new here. Seeking potential thoughts or advice on my situation.
\*I understand that I need professional help and I have already taken all the steps. I just need some additional perspectives.

I am female (32) and a short of my medical history is that I am medically complex. I have dysautonomia and all the fun that comes with that (tachycardia, hypertension, hypoglycemia turned diabetes, hyperhidrosis, PCOS/PMOS), and I’m autistic+adhd.

I had a hip surgery (labrum tear and hip impingement repair) early June and have been recovering from it. So far it’s going well. The issue started with me having odd side effects. I lost sense of taste and my near sight and auto focus for a while and it was coming back in slowly. Apparently it’s not an unheard side effect of anesthesia. I talked to my surgeon and went to see an ophthalmologist. My vision is fine for the most part and coming back almost fully. The issue then was that they noticed I have swollen eye nerves. This took me by surprise. I booked 2 MRI’s and made an appt to see a neuro ophthalmologist.
Now here is where I am feeling stuck and not knowing how to proceed. I don’t have headaches when I was asked or any of the other things I was asked, but then I have noticed some things I hadn’t paid attention to.
\-I do have occasional feeling of pressure, like when you take off on an airplane, it’s on my forehead and top of the head, but not quite a headache.
\-One that is much more noticeable, specially because it has gotten much worse, is that every time I get up from any position, sitting, laying or moving too quickly, it’s like I get this wave of dizziness and my vision fades in and back and like my brain fogs up. It lasts a few seconds, but it’s gotten much worse. It’s odd because sometimes I get up and I am fine and there’s a delay of a few seconds and then it hits me. I usually pause and hold on to something and then continue on my way. I didn’t think to mention to the ophthalmologist because I thought it was happening because I’ve had to spend so much time laying down for my hip surgery recovery, but it’s actually gotten worse and sometimes it happens even when I’m not getting up or shifting positions and I’m just mid walking or doing an activity.
\-This one is embarrassing but it’s now so bad that I can’t ignore it. But incontinence. I always wore panty liners because I like to protect my underwear. I have always had occasional overall dampness on my underwear and liners etc because I have hyperhidrosis and can’t control sweating. It’s better now it’s medicated. But lately I thought it was just my period, (on an unrelated note I’ve been bleeding excessively on a new birth control and I have no idea what to do about it, atm it’s 5-6 tbsp a day, i use a cup so I can tell. But I’ve also been bleeding non stop for the last 3 weeks while my body normalizes) but I was bleeding so heavily I switched to my cup, but that’s when I noticed that I’ve had my back up pads soaked through to my underwear and shorts every day multiple times a day the last 2-3 days. I have literally bought adult diaper underwear because I don’t know what else to do.
\-This one could be random but at this point I’m trying to not rule out anything, but just today I’ve had insane tremors. I’ve struggled with fine motor mildly since I was put on pregablin for a back injury. But today it was out of control. It felt like I imagine I would if I were to ever double dose on my adhd meds and drink a double Vietnamese coffee all at once while having a low (diabetic).
\-I wouldn’t even have thought to mention, but the last couple months my sense of smell may have gotten more sensitive. It’s very specific to anything breaded that is either fried or put in the oven or air fryer. I have to open all windows and fan the house if my husband or roommate cook something like that because it makes me so nauseous I want to throw up and feel sick.
\-overall I don’t know about this one, because it could also be due to recovery, but I’ve been feeling so tired and low energy/stamina. I can barely get anything done. I’m active doing a sitting activity for an hour and then I just have to lay down because I’m so physically and mentally exhausted. I thought it would get better as I recover but I just get mentally so tired.

After all that, if you’re still here. I am just wondering how urgent my situation is. My neuro ophthalmologist appt isn’t for another month and I don’t know if I should go to hospital etc because of my symptoms suddenly escalating. The bladder control stopping just really feels like it pushed me through my mental threshold of ability to not freak out. I don’t want to be on diapers for the next month to my appt. My MRI was last Thursday and they never uploaded it to mychart. It’s made me paranoid because it usually just takes them a day or two to do that. Is what I am going through normal or is it a situation where going to the hospital would be merited? And would they even be able to help me if I were to go? Are any of my symptoms indicative of anything specific? I feel like it’s hard to say because I don’t have the obvious symptoms. I’m just really trying not to spiral. But any advice? Reassurances? Anecdotes?

Hi, new here. Seeking potential thoughts or advice on my situation.
*I understand that I need professional help and I have already taken all the steps. I just need some additional perspectives.

I am female (32) and a short of my medical history is that I am medically complex. I have dysautonomia and all the fun that comes with that (tachycardia, hypertension, hypoglycemia turned diabetes, hyperhidrosis, PCOS/PMOS), and I’m autistic+adhd.

I had a hip surgery (labrum tear and hip impingement repair) early June and have been recovering from it. So far it’s going well. The issue started with me having odd side effects. I lost sense of taste and my near sight and auto focus for a while and it was coming back in slowly. Apparently it’s not an unheard side effect of anesthesia. I talked to my surgeon and went to see an ophthalmologist. My vision is fine for the most part and coming back almost fully. The issue then was that they noticed I have swollen eye nerves. This took me by surprise. I booked 2 MRI’s and made an appt to see a neuro ophthalmologist.
Now here is where I am feeling stuck and not knowing how to proceed. I don’t have headaches when I was asked or any of the other things I was asked, but then I have noticed some things I hadn’t paid attention to.
-I do have occasional feeling of pressure, like when you take off on an airplane, it’s on my forehead and top of the head, but not quite a headache.
-One that is much more noticeable, specially because it has gotten much worse, is that every time I get up from any position, sitting, laying or moving too quickly, it’s like I get this wave of dizziness and my vision fades in and back and like my brain fogs up. It lasts a few seconds, but it’s gotten much worse. It’s odd because sometimes I get up and I am fine and there’s a delay of a few seconds and then it hits me. I usually pause and hold on to something and then continue on my way. I didn’t think to mention to the ophthalmologist because I thought it was happening because I’ve had to spend so much time laying down for my hip surgery recovery, but it’s actually gotten worse and sometimes it happens even when I’m not getting up or shifting positions and I’m just mid walking or doing an activity.
-This one is embarrassing but it’s now so bad that I can’t ignore it. But incontinence. I always wore panty liners because I like to protect my underwear. I have always had occasional overall dampness on my underwear and liners etc because I have hyperhidrosis and can’t control sweating. It’s better now it’s medicated. But lately I thought it was just my period, (on an unrelated note I’ve been bleeding excessively on a new birth control and I have no idea what to do about it, atm it’s 5-6 tbsp a day, i use a cup so I can tell. But I’ve also been bleeding non stop for the last 3 weeks while my body normalizes) but I was bleeding so heavily I switched to my cup, but that’s when I noticed that I’ve had my back up pads soaked through to my underwear and shorts every day multiple times a day the last 2-3 days. I have literally bought adult diaper underwear because I don’t know what else to do.
-This one could be random but at this point I’m trying to not rule out anything, but just today I’ve had insane tremors. I’ve struggled with fine motor mildly since I was put on pregablin for a back injury. But today it was out of control. It felt like I imagine I would if I were to ever double dose on my adhd meds and drink a double Vietnamese coffee all at once while having a low (diabetic).
-I wouldn’t even have thought to mention, but the last couple months my sense of smell may have gotten more sensitive. It’s very specific to anything breaded that is either fried or put in the oven or air fryer. I have to open all windows and fan the house if my husband or roommate cook something like that because it makes me so nauseous I want to throw up and feel sick.
-overall I don’t know about this one, because it could also be due to recovery, but I’ve been feeling so tired and low energy/stamina. I can barely get anything done. I’m active doing a sitting activity for an hour and then I just have to lay down because I’m so physically and mentally exhausted. I thought it would get better as I recover but I just get mentally so tired.

After all that, if you’re still here. I am just wondering how urgent my situation is. My neuro ophthalmologist appt isn’t for another month and I don’t know if I should go to hospital etc because of my symptoms suddenly escalating. The bladder control stopping just really feels like it pushed me through my mental threshold of ability to not freak out. I don’t want to be on diapers for the next month to my appt. My MRI was last Thursday and they never uploaded it to mychart. It’s made me paranoid because it usually just takes them a day or two to do that. Is what I am going through normal or is it a situation where going to the hospital would be merited? And would they even be able to help me if I were to go? Are any of my symptoms indicative of anything specific? I feel like it’s hard to say because I don’t have the obvious symptoms. I’m just really trying not to spiral. But any advice? Reassurances? Anecdotes?