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bubblegumknuckles · 1 year

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I don't mean to overstep so feel free to ignore this ask but do you really have narcolepsy. Could you tell me more about narcolepsy and how it affects you?

From and ignoramus anon

Hi you arent over stepping, no worries. Sorry for the delay, I have a hard time answering back anybody, and ive been sleeping a ton.

So, when I wrote that I had Narcolepsy in my bio, it was a few months ago & for different health reasons I wasnt able to get the final results of my final sleep study test (4th one.) Narcolepsy was what was most likely, especially since my primary doctor said her mom has narcolepsy & I wasnt even taking about sleeping problems to her, but fatigue was mentioned because I was explaining my symptoms that point towards a few autoimmune disorders….and she asked a few questions & said I sounded exactly like her mom who has Narcolepsy & it took her like 20 years to get diagnosed…. At first i was like nahhhh because the only knowledge I had of it was from tv. She gave me a referral to a sleep doctor but I ignored it for a few months, before doing research because my sleep keeps getting worse.

Then actually going, they dont really believe you at first. Insurance also makes you jump through hoops & i had to wait months each time, &the day of a sleep study, my insurance would finally say Not approved…so id have to reschedule. Its been a huge headache and hassle. I had to prove to the doctor and insurance basically how i dont have sleep apnea or restless leg syndrome or anything else before they will consider Narcolepsy. and even then the test for Narcolepsy is so difficult to pass, if you fail else, then they will diagnose you as Idiopathic Hypersomnia meaning they dont know whats wrong with you. but something is off. thats the official diagnosis, but Narcolepsy and IH are both treated very similar. Oh and theres two types of Narcolepsy, one being the more known one with cataplexy (like fainting and dropping out of nowhere at all times sleeping) & there is N2 that is basically without cataplexy (I dont drop out of nowhere and sleep)

So yeah, the results that finally came out said on some of my naps I fell asleep in 9 minutes & basically the criteria for narcolepsy is so strict it has to be under 8 minutes. i was like….thats pretty close. But nah they wanna use math and average it out and blah blah I dont qualify as technically narcolepy. I got diagnosed with Idiopathic Hypersomnia instead. I would be more irritated but at least its treated similar or the same. It was noted i have 0% sleep apnea & he said it is very strange that for an adult, I sleep so deeply, like I hit the deepest parts of sleep that usually just babies and children get to. Soooo I tried to get him to think on that….like bro im telling you I sleep that deeply and that much AND still have to continue napping thru the day. I sleep so much. Its impacting my life. And its weirdly gotten worse over the pandemic, altho I have always been like this.

Um sorry Idk if that answered your question bc I wouldve gotten more specific how narcolepsy affects me n stuff. But since I just finally got the official diagnosis of IH instead & its technically not Narcolepsy, i didnt know if u wanted to know more. In my every day life, im probably going to still call it Narcolepsy tbh bc thats what people know a little more about. Theyll be like “oh she really does have a sleeping disorder” does that make sense?

Anyway you can ask more questions if you want:)

#narcolepsy #narcoleptic #sleeping disorders #sleepingdisorder #idiopathic hypersomnia #anon #thanks for asking!#severe fatigue #chronic fatigue #fatigue #sleep

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debbshock · 3 years

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I have 14 years and 2 months sober. As hard as you think that might be, getting there, to where I was trying to put it down, was a whole fuck ton harder. So many bad things happened, and KEPT happening, that I could not conceive of surviving any more bad things. Dying would have been great; I prayed for death every day. Really. I was doomed to live, conscious and suffering, embarrassed to death and insane and terrified of my own craziness every minute of every day. Many people who drink like that would understand, maybe. I've talked to a lot of people who know. Example: I was scared to go to sleep, and would sleep in my sneakers in case I had to wake up and run away really fast. It made sense at the time. I wound up in other states, sometimes by choice, but sometimes not. Remember this if you remember nothing else: men love a drunk woman and will always help a woman drink. I know I know, not all men. Men with shitty motives. Men that want to get laid or cop a feel, or do something no one else has let them do. The ones who don't, are not the ones you have to worry about. One guy put something in my drink in Florida and I woke up in Kentucky. I couldn't get out of there for four months, I got out with the clothes on my back and my two feet and a phone that I took off somebody else. Oy vey what a schlep, I'm thinking at fourteen years, but then, I was standing on a road in Kentucky scared that the guy was going to get in his car and start running the roads and find me. Thank God he had sleep apnea so I'd talked him into a sleep study at Bowling Green Hospital, so once they put him to bed I beat feet and called 911 and they took me to a shelter. God bless that shelter. But anyway that was after four months of Kentucky Guy. So yeah, baaad shit happened. And it still took me a few years to decide to try to get sober. I mean, nobody can put anything in your drink if you don't drink. I don't fall for ridiculous lines of bullshit when I don't drink. (Well, not as ridiculous.) And I'm not disowned by everyone I know, so that if I get abducted I have not even one person I can call that will have anything to do with me, no family, no nobody. Also, the Kentucky Guy was killing people. Weirdly, not me. This has turned into one rambly paragraph, right? Well thank you for your attention and hugs and kisses. Thank you for being here. (You know who you are. Thank you.)

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psi-psina · 7 years

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Hi. :) You don't know be but I've been following you for a little while now and since I saw your posts talking about Graves Disease I wanted to ask you about it. I'm a 19 yr old girl, and I was diagnosed with it a few months ago and started on PTU. I wanted to ask, what was your experience with doctors and medication like? You had to have your thyroid removed? I feel worried about how this is supposed to be managed long-term because my doctors can be quite dismissive. If you don't mind. :)

OH MY GOD

DEAR ANON PLEASE HEED THE FOLLOWING LEARN FROM MY MISTAKES

So this is my experience and for the LOVE OF GOD don’t let this happen to you.

I was diagnosed with graves disease at the age of 14, showing symptoms of fatigue, tremors in my hands, exophthalmos and a slight goitre. I was tested for sleep apnea before i was diagnosed. Once diagnosed, my mother took me to a naturopath rather than an endocrinologist (i was a child, i had no control over the situation PLEASE DON’T DO ANYTHING THIS STUPID) 😩. It didn’t go well. I was given a tincture of iodine and various herbs (including licorice :/), which i had to take for about 3 months. it did nothing for me and my symptoms steadily got worse until my mother had to take me back to the doctor. My blood work showed a significant worsening of my condition; my T3 & T4 were both far higher than they had been before.

I was put on Neo-Mercazole which I remained on periodically over the next 9 years. You cannot remain on thyroid suppressants indefinitely due to their nature and bastard side effects (expelling giant blood clots through your nose? horrific), which got gradually worse the longer I had to take them. I don’t know how your doctors are managing your PTU but be vigilant. You NEED to aim at getting in remission. I was monitored closely while taking NM over that first course, and then as my hormone levels returned to normal I was weened off it. I was okay for 2 years, and then relapsed when I was 17. I was put back on NM and monitored until my levels returned to “normal”, then I relapsed again when I was 20.

after this I remained on NM pretty much for the following 3 years, but it’s effectiveness started to wane and many of the diffuse symptoms (especially anxiety, palpitations, insomnia, tremors, goitre, exophthalmos etc) simply weren’t going away even when my blood work showed I was within a supposedly normal hormonal range, and I just slowly went downhill over those 3 years.

this is huge problem with regulating thyroid disorders like this, your hormones are measured only in your blood work but T3 and T4 are heavily protein-bound hormones, meaning it’s presence in your blood IS NOT always consistent with it’s presence in your other tissues, where it is able to accumulate (not indefinitely without detection, but enough to give you symptoms). Suppressants just didn’t work for me long-term. They couldn’t help my thyroid regulate my metabolism over an extended period of time, the thyroxine in my body just kept accumulating. Basically, the moment I relapsed when I was 17, I was fucked. I was not aware of this at the time, obviously. At the time I had absolutely no idea what was going on.

the events at the end of my Final Relapse that led up to my surgery were serendipitous and bizarre. I was travelling to Japan in the October (2013) for a few weeks (which i flat out should not have been doing lmao) and got an appointment with my doc because i needed to fill another script for NM before I left, because i was about to run out. So i went and got the script and then when I went to fill it at the pharmacy, I couldn’t get the NM. There was an international shortage of Neo-Mercazole and I was flying out of the country the literal next day and I couldn’t get any ANYWHERE. PTU was still available but I couldn’t get that with a script for NM either. So I had no medication for most of those three weeks.

When I got home I booked another appointment as soon as I could get one and went back to work. Got another blood test to see what was going on and finally got some PTU. A couple of days later I came down with a cold. My immune system was shot and I was struggling to do things like get out of bed and walk up stairs at this point so I called in sick to work on the monday because felt so ill, and made another doc appt for that afternoon because i needed a medical certificate.

I went in to the doctor expecting to walk out with a med certificate, and asked her about my bloodwork. She opened the bloodwork and looked at it, looked at me, then took my temperature and pulse and immediately called my endocrinologist. My T3 and T4 levels were so high they were not measurable, i was feverish and hazy and my resting heart rate was 160-170 bpm. She told me I needed to go straight to emergency because I was at risk of thyroid storm (at which point I just burst into tears lol) and she called ahead to the hospital to have me admitted immediately, and that was that. I was taken to the hospital and was monitored there for 4 days and given several medications to try to flush some of the excess thyroxine from my body to make it safe enough for them to cut my thyroid out, which happened four weeks later.

So aside from the more diffuse symptoms of anxiety, depression, insomnia, full body tremors, exhaustion, goitre and exophthalmos, I was admitted in emergency with acute symptoms like fever, tachycardia, chest pain, hypertension, muscle weakness, bloody diarrhea, peripheral edema and fuck knows what else. :/ None of these things really abated over the weeks leading up to the surgery, and I honestly can’t describe what it was like to wake up from it almost asymptomatic after dealing with these things for months and years. It was like waking up in a completely different body.

If you’re wondering how I could have let things get that bad, how i didn’t realise just how serious it was, you need to understand. You need to understand how gradually all of this happens, it built up over a period of years, and when you live with a chronic illness for that long you literally just get used to feeling like shit, so if something else shitty starts happening you’re already so tired it hardly even registers. It doesn’t strike you as particularly abnormal because it all becomes normal. That’s the most dangerous thing about it. Not to mention, the sicker you get with Graves, the less capable you are of assessing your own situation; the anxiety and exhaustion and insomnia and horrible hazy brain fog you’re in every single day make it completely impossible to think clearly.

SO THE MORAL OF THIS IS, for the love of God, be careful, and take it seriously. It is extremely serious. I did not take it seriously enough for years because I was young, active and otherwise healthy which gave me a threshold for tolerating it that was far too high. Don’t dismiss your symptoms, don’t let your doctors dismiss your symptoms, ESPECIALLY the mental symptoms. Be aware of all possible and potential symptoms so you can actually recognise them for what they are, along with all the potential side effects of PTU.

Get blood work done EVERY THREE MONTHS. THREE MONTHS, not six, not twelve, every three months. Other thyroid disorders, you might be able to be a bit more chill about, graves you fucking cannot. You cannot.

Read and get as much information about this as you can. Heed how your diet is going to effect this, because like any endocrine disorder, it will.

Elaine Moore is useful. (Read the forums) This is useful. Reading patient forums about people’s experience with it and how they manage it is invaluable, it’s far better than reading blogs that are usually dogmatic and trying to sell you stuff. patient.info is also a good resource for information.

Make sure you have a good GP and ESPECIALLY a good endocrinologist who works WITH you. Most endo’s DO NOT specialise in thyroid disorders, most of them specialise in diabetes and only have a middling knowledge of thyroid issues. It’s absolutely crucial to find an endo who specialises in thyroid disorders. Find one, if you can. Otherwise just crowd source the information yourself, print it and take it to your doctors yourself. Because honestly, the cost of not doing that is just....not worth it.

This isn’t supposed to scare you or anything, it’s a god damn burden but there are plenty of people with Graves who achieve remission or find ways to manage it over long periods of time, it’s a highly individual disease. So I really hope you are able to do that. :) TAKE CARE OF YOURSELF.

#Anonymous

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dapperpea · 7 years

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Hey! So I saw your post about sleep apnea in the tags. Im 22 and i constantly feel tired if I don't sleep 10+ hours, and I can easily sleep 12-16 hours a night. My boyfriend told me a year ago that I stop breathing in my sleep for so long that he gets worried and watches until I breathe again, or just wakes me up. I went to a regular doctor who told me I "wasn't the type of person to get sleep apnea". I went to an ENT doctor who briefly looked at my septum and told me I probably don't (part one)

(Part two) probably don't have sleep apnea. I'd really like to get a sleep study done at least ):

HOLY FRICK yes that sounds like sleep apnea, best I can tell, pleasepleaseplease go get a sleep study-- If you constantly feel tired if you don’t get 10 hours of sleep, /something’s/ wrong, whatever it is. And especially if you have someone who’s witnessed you stop breathing? That’s pretty dang good evidence, whatever a Dr. Septum Peek might think.

Sleep is so, so important because it affects your brain function and your thinking/processing--not even counting the fact that, y’know, you have to go out there and live and have time to work and go to school and stuff. I’m so sorry to hear doctors have deemed you ‘not one of those people,’ without actually doing anything to test the problem. That’s absolute bunk.

I’m not gonna lie, sleep studies are uncomfortable, costly, and difficult to fit into your schedule. Thankfully, most all sleep studies, even basic ones, test for apnea--you shouldn’t have the problem I did, where my first study basically went [shrug] ‘IDK man it’s not apnea or restless leg, go find a more specific doctor.’ Still, the benefits of having hours back in your day, having energy, and reducing the risks associated with apnea... It’s worth it. It really is. Sleep is the most important.

If you need something to tide you over, I know there are medications that help wake you up in the morning. It won’t fix the actual issue, but it might be less costly and help you get out of bed until you can get a study. I got mine from my neurologist, so I’m not sure if a regular doctor can give them to you, but there’s no harm in asking?

If there’s anything else I can help you with, let me know.

#medical #Anonymous

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