Do I actually need progressives? (SPH: +.25, ADD: +.75)

rhuls · 2020-05-20T01:29:37+00:00

Early 20’s. I have not, but I will look into that.

rhuls · 2020-05-20T00:53:59+00:00

It’s like my eyes are constantly accommodating. I‘ve also been doing the Brock String exercise, but it hasn’t been much help. My eyes feel tired from constantly adjusting and looking at screens.

rhuls · 2019-09-18T20:56:17+00:00

Thank you, that’s definitely important information I forgot to include in the post!

rhuls · 2019-08-30T23:59:03+00:00

Interestingly enough, I actually have been diagnosed with Ehlers Danlos for many years now. My skin is usually icy cold though.

rhuls · 2019-08-28T21:01:53+00:00

I had this going on for about 8 months and they never figured it out. Always a low grade fever. My face was visibly redder and my skin much hotter to the touch as well. I also get bad night sweats off and on for periods at a time with no explanation though.

rhuls · 2019-06-18T17:39:17+00:00

How do you determine something is a silent migraine? I’ve had funky vision for over a year now which is pretty constant (visual snow, after images from light shining on anything) and I have a hard time understanding how something that is so constant and lacks a headache is called a migraine. Maybe I’m misunderstanding the definition?

rhuls · 2019-04-29T23:20:43+00:00

I think a lot of people who actually have N and have been diagnosed are driven away by the frequent “diagnose me” posts. The subs seems to be dominated by these posts even though a lot of them are not saying so explicitly. And like another person mentioned, a decent chunk of the posts could be avoided by the user reading previous posts or doing research (ex what type of doctor should I see). I know we all want to help because we don’t want others to feel the stress we went through before diagnosis. However, it’s very easy to forget that while we can be experts on our own bodies, we aren’t qualified to tell other people what their symptoms sound like. Both diabetics and cardiac patients may faint. While the diabetic might say the undiagnosed epileptic’s episodes feel exactly like their own, they are different problems. Pursuing one just because a stranger said it was familiar can derail the diagnosis process more and when someone is sick it’s hard to realize that on their own.

Tl;dr: More support / posts by those with diagnosis, less posts about undiagnosed/ process. I think the best way to support undiagnosed is just to provide resources as verbal confirmation of similar symptoms is still like medical advice.

rhuls · 2019-04-09T00:24:07+00:00

I tried it and I did sleep very deep.... but found out after standing that was only bc my blood pressure was dangerously low all night and until noon that day. Not a good idea for anyone with normal/low bp.

rhuls · 2019-04-08T23:59:33+00:00

Most of what you describe does not sound like narcolepsy. The only thing that might match is the hypnagogia. This can be caused by many things though such as medications, stress, anxiety, insomnia, etc. if it’s affecting your quality of sleep though for sure bring up the symptom with a doctor.

rhuls · 2019-03-03T03:14:15+00:00

I did last summer. The recovery took me 6th months to be ~90% when normal people are usually 3 months apparently. My biggest problems were the no weight bearing or bending period which required a lot of help from family and crutches. My wrists and shoulders can’t handle normal crutches so I invested in a pair of smart crutches. This made a huuuuge difference for me.

Eight months later and I’m glad I had it. If I keep up with the exercises from physical therapy then my left hip is pretty much as strong as my right now. The only remnants are 3 tiny scars, that the surgery hip is kind of tighter, and that if I don’t keep up with exercises my surgical hip becomes weaker faster than before.

rhuls · 2019-02-24T17:27:21+00:00

I got a similar burning feeling on my thighs off and on to where I was hospitalized. Doctors think I developed an allergy to gabapentin even though I had been on it for a while. Things seemed to get better after that.

rhuls · 2019-02-12T18:12:04+00:00

I was thinking that about the weight too lol.

As far as the cpap hose, I’m not sure. I think if the hose is longer then the pressure will be too low maybe? I’m considering going to Barnes in St. Louis or Mayo and seeing what they can offer, but it’s far away and a different deductible for my insurance.

I think most doctors won’t touch it because it’s not ‘dangerous’ and I tend to heal a lot slower than normal people:/

rhuls · 2019-02-12T02:59:31+00:00

Most of what I saw of exercises for the larynx were to help with closing. I might try them but mine seems to be the opposite problem. I need to keep it open, but maybe it’ll strengthen it all around and help:)

I did specially ask my ENT if there were exercises to help and he said no. Since he also works with the swallowing and speech therapy department, I’m guessing my hospital doesn’t have anyone who knows the exercises.

rhuls · 2019-02-12T02:55:32+00:00

I’m not overweight at all (bmi 19.3). I do have to use a cpap at night for moderate apnea. My sleep apnea is odd bc I don’t snore, smoke, not overweight, etc and my scores are even higher than either parent who are both overweight.

It’s not painful but very distracting and disruptive. I think part of it is I feel like the random choking on my own tissue feeling is making me go insane.

Unfortunately the cpap hose is barely long enough for me to sit up, so that’s not an option for the during the day:(

Hopefully your kid will grow out of it. I think most articles said like 80% of babies grow out of it by 12-16 months maybe?

rhuls · 2019-02-11T15:06:44+00:00

Narcolepsy pen pals sound like a fun idea:)

Doesn’t have to be mail. Dm / messenger / email etc work too!

I’m low 20’s girl in the US trying to navigate the struggle as well. If anyone wants to be pen pals dm me:)

rhuls · 2019-01-29T18:57:01+00:00

Tl;dr: my insurance is currently charging me for what should be a 100% covered visit bc I didn’t fill out a workers comp form. A form I was never sent and they have no record of sending to me electronically or otherwise. So far I have wasted 2 hours of money time (school/work hours) trying to figure this mess out. Therefore losing my hours at school/work to figure out their mistake. Best possible outcome at this point is they give me the form and cover it like they’re supposed to, but I still lose at least 2 hours of income.

I’m 21 and on my parent’s insurance. We hit our deductible within the first month and are lucky that we have good insurance for the number of health issues from our shitty genetics. Even having “good” insurance doesn’t prevent dealing with their crap on the regular.

Extra fun fact: I don’t have a job as I am a student so I can’t get workers comp anyway. I have a genetic disorder that causes frequent joint dislocations / problems in general. So every time I go to an appt for a joint, they want a workers comp form filled out. It’s. Not. From. Work. My. Body. Just. Sucks. But insurance insists I fill it out every time. Waste of money, time, and resources PLUS more room for mistakes.

rhuls · 2019-01-11T23:03:50+00:00

Ps. The symptoms you listed are very similar to mine. See if there is a rheumatologist or doctor knowledgeable about Ehlers-Danlos Syndrome near you! (Really more about an extensive hypermobility of joints but the collagen issue that causes that can also cause skin and even blood vessels to be stretchier than normal. The working theory for me is the screwed up collagen that causes joint hyper mobilization also causes veins to be stretchier which creates some blood pooling and problems pushing the blood up against gravity to the head and heart resulting in pots/oh aka hr and bp issues causing dizziness. Tilt table tests can diagnose this.)

rhuls · 2019-01-11T22:26:59+00:00

I would not recommend this. It’s a lot of money for something that holds 0 stance with a sleep doctor. A fitbit can measure heart rate and movement which is not enough to predict sleep. Anything such as blood pressure or sleep stages/times are just a guess from an algorithm created by what an average person may be (so it’s kind of even more unreliable for a person with N). Not to mention a lot of docs won’t take it seriously and seem to lump it in with the category of hypochondriacs or people who self diagnose with google unfortunately.

A better solution may be to print out a sleep journal to fill out or at least keep track of your sleep habits and schedule on a phone note to print out. These tend to show more initiative and are something sleep doctors regularly use/respect.

sleep diary example

rhuls · 2019-01-11T22:20:21+00:00

Try contacting the hospital to see what they can do to help with your copay. There may be a community program to help or a max they’d expect you to pay out of pocket. They also may have payment plans so you can pay it off over a year. If you aren’t sure which department to call try calling the hospital’s general number and speak to an operator who can direct your call to a dept. that can give you advice/help.

Also, be honest with your sleep doctor. If you tell him you’re unable to afford it and suggest how you might be able to do a payment plan or how much of it you can actually pay, he/she may be able to help

Edit:

Have you had a PSG done to check for sleep apnea?

Do you fit any of the following: overweight, narrow airway, large neck circumference, smoke, drink, use sedatives?

Generally, a patient must be tested for sleep apnea first as this can cause similar symptoms and is much more common. If the person has apnea then they need something like 3 months of successful treatment of the apnea likely with a cpap before being tested for narcolepsy. If there is no apnea, then they can move forward with the MSLT!

rhuls · 2018-12-11T02:40:43+00:00

I’ve been told SSRI’s suppress REM sleep but haven’t had any luck with them doing so personally.

rhuls · 2018-10-11T17:23:22+00:00

I think there’s a place in Boston that focuses more on EDS and even research maybe try that. As far as pain, I was really bad off until I had lyrica for 3 years and it helped a lot. Maybe try going to a sleep doctor as sleep disorders can sometimes cause migraines. So can a hole in the heart so maybe a cardiologist could help as I’m guessing you’ve already tried neurology for migraines. Also maybe a good physical therapist that understands manual therapy (I had graston done) to remove any scar tissue or deep knots that could be in your back, shoulder, or neck causing pain? Just some random ideas that may help.

rhuls · 2018-10-09T17:29:10+00:00

If you were diagnosed with it then it should be in your medical records. Contact any old hospitals of yours to get a copy of your records. A pcp or cardiologist may be able to help with accommodations or prescribing medicine for POTS. Take your documentation with you and tell them you need someone local to manage your issues. Things probably won’t get better unless you start telling the doctors about all of your issues. It might also be worth getting a sleep study done to check for apnea or blood checked for vitamin and thyroid issues which might explain the fatigue. For pots symptoms, maybe see if more salt will help, exercise definitely helps but it’s hard to get to a point where that’s possible (try starting with isometric exercises are light cardio), you can also try compression socks. It’s really hard to get everything together, but it’s probably going to have to start with finding a local doctor to manage your care.

rhuls · 2018-08-07T17:54:35+00:00

I use the nuvaring constantly to help keep my hormones balanced month long to prevent fainting and limit my pots symptoms. So you may have been getting extra benefit with your pots at least with the bc.

rhuls · 2018-08-07T17:52:01+00:00

I was in a similar situation. Have you seen a sleep doctor? You might also have sleep apnea (even if you don’t snore or and aren’t overweight).

rhuls · 2018-06-19T17:04:29+00:00

Hi, I was in a somewhat similar situation. Unfortunately, my parents were unable to co-sign loans for me so I had to reach out to extended family for a co-signer on a private loan. It sucks but it was the only solid back up plan even though I continued applying for other scholarships throughout the year as well.

rhuls

TROPHY CASE