u/sleepysunbum

I’m supposed to be going to college this upcoming semester and I’m worried about being able to nap in public places.

My school isn’t very big and the library is the only place I can think of with couches, but I can’t imagine setting a loud alarm in a library. Also, I have this fear that if I use earbuds, they’ll fall out and I won’t wake up.

I also worry about someone stealing my laptop or wallet while I’m fast asleep.

I’d love any advice or tips!

I’ve been in a really bad migraine and health cycle lately and feel like I have so much to figure out with my health stuff and appointments to make and meds to try.

Even showering and brushing my teeth can feel overwhelming.

But I’m worried that if I don’t take any classes, i might just make zero progress for months as I try new meds or wait for specialists to get back to me. (Sometimes they have a year+ waiting list.)

I’m 23F and have had to medically withdraw and take underloads in the past a lot. I’ve completed 63 credits so far and older than 99% of the students I meet.

I don’t want to promote isolation and over analyzing my health stuff by not taking classes, but I worry about being able to complete work, complete basic life things or make any progress on my health issues if I’m taking classes.

(Though I feel like I haven’t made progress in the past month of summer and have laid around and engaged in escapism bc of the pain.)

I’m also hesitant to sign up for 1 or 2 bc of the additional costs of tuition aspect. Plus, it’s expensive to withdraw from classes.

My school doesn’t have online options either.

I feel so conflicted and would love to hear any advice.

Sorry for the ramble

I’m 5’4 and often have to be on a high dose of stimulants to stay awake. I take vyvanse 60 mg and wakix. My heart rate will often be sitting around 120-135 bpm just resting.

I have been diagnosed with POTS and also have hEDS. I tend to have low blood pressure and I think my heart rate is generally higher due to these diagnoses.

For example, my heart rate will be like 70/80 ish at night.

I’m worried about my heart rate being so high constantly and exercising as well with these issues, but my doctors have been giving conflicting opinions on whether it’s a problem or not.

I tried xywav and it gave me bad side effects so I stopped. Also, if i struggle to stay awake even o’ the high dose of vyvanse I have now.

I’d appreciate any and all advice!

Everyone says to research your conditions but I struggle to understand all the medical literature and often can find conflicting information.

I feel like I need investigate stuff and find out what diagnostic tests I can do and research good doctors or long term care clinics.

(I feel like no doctor is investigating and I don’t have a comprehensive team of doctors and have had bad tests and bad info a lot only to learn it was wrong later on.)

I don’t know how to organize stuff well or take notes down well from Reddit or websites while being sick. All I can really find the energy to do is copy paste or screenshot. But obviously then, it can be hard to find or act on.

It can just all feel like too much and it’s hard to think or focus with symptoms. Does anyone have any advice?

I’m really struggling to get food, brush my teeth, floss, put in my retainers, wash my face, etc.

I’ve been getting migraines so frequently and they’re so intense and moving makes them worse.

They’ve been constant recently and seem resistant to meds. I don’t know what to do.

I can’t just not brush my teeth indefinitely or never wash my face. Any suggestions or ideas?

I could use some help or accessibility tools or even ideas on if I should try to travel to visit a headache clinic or diagnostic center since they’ve been so bad lately.

Thank you.

I was wondering if you guys had to drink extra salt, etc. for weeks and build up to feel better or if it was more of an immediate you notice.

I’ve been trying salt drinks recently but I can’t tell if it’s helping.

How can I fix this? I feel like I try to use a pillow but then my feet just press into the pillow and hurt. It also will hurt when I’m sitting in a chair and my feet are pressed into the ground.

Are there specific ankle positions, pillows or heel pad cushions to use?

I’ve tried to go to podiatrists but they just say it hurts bc I’m thin and have less fat pads… but it’s really the pressure that causes it to hurt over time.

I will get pain on my heels but then also inner arch and pads of toes. It gets worse when standing, so I feel like this is classic plantar fasciitis.

Any help or suggestions would be greatly appreciated!!

I had a short period of dexamathasone a little over a month ago, but messed up the dosing on the first 2 days (took 1 pill instead of 2) but had bad-ish side effects even though it seemed to help a little afterwards.

I’m currently in an intractable migraine cycle and it’s affecting my functioning a lot.

I see a general neurologist for autoimmune stuff and mentioned I’m in an intractable migraine cycle. (I’m having it practically all day everyday- expect for maybe a little bit when I just wake up).

He said he could prescribe a prednisone taper as an option and it’d be a good idea.

I also saw an ENT recently for congestion and inflammation and she approved of it as well and said she was going to suggest that anyways.

I also have my migraine neurologist who is a kid’s migraine neurologist that I grew up with (I’m 23).

When I mentioned whether we could try a second steroid dose with prednisone (that I’ve had tolerated well in the past), he said he was worried it would do damage and that it was too soon.

I’m not sure if he believes this because he’s used to working with children or if I should be worried about taking another steroid pack a month later.

My experience at the ER was horrible. After waiting for hours, they put me in a hallway sort of area with bright lights, noise constantly, and a chair to sit in with a little divider from other patients.

I was given 25 mg Benadryl (diphenhydramine), toradol (keterolac), and then maybe 3/4ths of a reglan (metoclopramide) dose through a syringe rather than an IV drip. I was also given was given about half a bag of acetaminophen (OFIRMEV) through a drip.

I ended up having weird bad feelings from the reglan, so they paused it and gave me another 25 mg of Benadryl. They also gave me 1 mg of magnesium sulfate through an IV drip.

I still had a migraine afterwards, so I asked if I could receive the rest of the reglan, but they no longer had the info because the nurse had finished her shift.

I asked about other options they could give me since it still wasn’t broken, and they didn’t really have any other suggestions besides decadron which I was on about a short course about a month ago.

So, all this to say, should I try going to a different ER for another migraine cocktail? Can you even go back so soon?

What else is there to do when I’m having intractable migraine to break it as soon as possible?

Should I try traveling far for a headache clinic?

I can’t live like this and it sucks. Thank you for your help.

My functioning has become terrible and I only have a few good hours a day (if that). My local specialists keep giving contradicting information (or end up not as expert as advertised) and seem to have given up.

No one seems to want to investigate and no one really has answers because I have complex issues and one sort of medicine could impact my other conditions.

I’ve also had experiences with unreliable testing done, lack of bloodwork follow up, and bad medication interactions.

Question:

I’m really struggling and looking for advice on if there’s some comprehensive care team or clinic of system of doctors that work together that could help? I’ve been to one academic hospital for hEDS (UVA) but the specialists there mentioned they don’t have a team to refer me to so I’ll have to try to find more independent specialists.

I live in the suburbs of VA and the health systems here aren’t integrated well. I’ve heard about Mayo Clinic, but when we applied years before, we got rejected. I’d be willing to travel anywhere or go to a hospital for a week of visits or a clinic, if it meant help. I’d go to a hospital right now if I thought they’d take me in for comprehensive care and follow up longer-term care.

I can’t keep living like this and it seems like no one’s an actual “expert” here locally. I feel like years are being wasted getting referred around sent to a different specialists in different medical systems who don’t work together and my life is deteriorating.

If it helps:

I have narcolepsy, chronic migraine, POTS, dysautonomia and hypermobility, GERD, other GI issues, chronic sinusitis, asthma. I usually have low blood pressure and tachycardia due to the stimulant I need to stay awake for narcolepsy.

I got prescribed dexamethasone 4 mg twice a day for 5 days and I feel like it’s helped somewhat in decreasing the migraines, but I’ve had a bunch of other bad side effects with sleep and symptoms.

I feel like I’ve done well on prednisone before but my doctor said dexamethasone has shown to have better evidence for treating intractable migraines. When I recently mentioned experiencing the bad side effects that I’ve been having, he said I should just stop the steroids completely.

I can’t really go back to how bad and intense and all day they were before, so I’m looking for advice on what your neurologists typically recommend during these times or if dexamethasone is the norm.

I’ll take any suggestions, steroids or not, etc. or any ideas on what could be triggering them so badly lately

I’m afraid to stop a steroid pack mid way, not get another recommendation, and be stuck in a terrible cycle again :(((

I’ve been having constant migraines every day recently and I’m not sure what to do. I’m in a summer class and desperately want to be able to work during my day.

I have other health issues like narcolepsy, pots, hypermobility, and chronic sinusitis that may be contributing to my migraines. Recent basic bloodwork we requested showed a vitamin D deficiency

I take nurtec when I can (once every 24 hours) and a larger dose of naproxen 2-3 times a week when I can. I also get Botox and vypeti as preventatives, but I’m still getting headaches every day.

Currently, I just feel so lost and I feel like my doctor doesn’t have any new suggestions.

He said we could try a steroid round, but he doesn’t believe it would be very effective because instead of it being an intractable migraine, it’s just one that occurs every day and lasts for hours.

I can’t live life like this and I’m in pain and it’s hard to think basically all the time. Does anyone have any ideas of things I should get checked or things I can try or do? Or any resources??

I just feel abandoned by the health system and I’m at a loss.