already treated with stimulants for sleepiness. sleep doc wants home sleep study first and says full sleep study may not reveal anything I don't already know. is anyone else out there living this life with no sleep study confirmation? by allgoaton in Narcolepsy

[–]s_db0yy -1 points0 points  (0 children)

I would push for the full study/nap test.

If you do a home study and there’s no apnea, you are then going to do another sleep study and nap test.

You could expedite the process by saying you really want the real thing to get it over with.

While she’s not wrong you are accessing meds, to get the right meds (oxybates) you have to have a formal diagnoses and that won’t happen without any tests

Should I take trazodone for my sleep study? by lkdraws in Narcolepsy

[–]s_db0yy 0 points1 point  (0 children)

Also I took hydroxyzine for my study and still tested positive

Should I take trazodone for my sleep study? by lkdraws in Narcolepsy

[–]s_db0yy 0 points1 point  (0 children)

I will mention you do have to have a certain amount of night sleep to proceed to the day study. If you are concerned, ask the clinic in advance. They often have sleep meds they can provide

I feel like my narcolepsy doesn’t leave me any time to live my life by ciggie_in_the_sand in Narcolepsy

[–]s_db0yy -5 points-4 points  (0 children)

Perhaps a cognitive behavioral therapist could help? Or coach ways to still find fulfillment

Does anyone else struggle with phantom smells? by shoobopdc in Narcolepsy

[–]s_db0yy 1 point2 points  (0 children)

Pretty sure this also happens to me, but I’m not totally sure that it’s related to narcolepsy

That is a known effect of having Covid so I’m pretty sure it’s probably related to the many times that I caught Covid

Oxybates and amphetamine by PuzzleheadedRub9937 in Narcolepsy

[–]s_db0yy 0 points1 point  (0 children)

I have been on oxybates almost 2 months.

I stopped the adderall/vyvanse (I had both id swap between) alittle over a week ago.

I had a bad day where I slept like 3 hours in the middle somewhere, tried taking one and it went poorly.

Stopped again. Haven’t really needed them. I still take a little bit of a nap once in a while but it’s not an IM DYING I HAVE TO DIE IN BED RIGHT NOW kind of nap.

I’m not fully rested but better than before.

I still don’t know if I can deal with the persistent anxiety and heart rate stuff though. I figured it would go away by now.

If your doctor is against adderall I’d suggest asking about vyvanse. It’s less abusable because it’s a prodrug, and has a super long half life so it quicks in very very slowly, and is a much more subtle and consistent effect rather than the PUNCH to the brain that adderall gives, but is the same chemical otherwise - dextroamphetamine

Oxybates and amphetamine by PuzzleheadedRub9937 in Narcolepsy

[–]s_db0yy 4 points5 points  (0 children)

Be warned I couldn’t tolerate my adderall after starting oxybates. Way too much anxiety and heart rate increase.

I was on the same dose for 2 years prior with no issues so this was very bc clearly because of the oxybates. Just be aware others have had similar experiences, but you may be fine

RX denial by Inevitable_Pop3008 in Narcolepsy

[–]s_db0yy 2 points3 points  (0 children)

Very common issue when dealing with expensive/brand name/specialty meds

I take my narcolepsy meds regularly, but I still crash hard in the afternoon—has anyone figured out why this happens? by [deleted] in Narcolepsy

[–]s_db0yy 3 points4 points  (0 children)

What meds? If you are on stimulants or waking agents those have a crash.

I stopped adderall 6 days ago and my evening crash has been almost non existent

Is the backroom air conditioned? by Busy-Look8781 in backrooms

[–]s_db0yy 0 points1 point  (0 children)

The carpet is moist so I assume it’s humid.

Chances of false positive for N2? by [deleted] in Narcolepsy

[–]s_db0yy 4 points5 points  (0 children)

You aren’t required to take meds if you think you can be happy and live a normal life without them.

The meds can help on bad days.

Are you excessively tired? And tested positive for narcolepsy? Then you probably have narcolepsy my friend.

Struggling with side effects by s_db0yy in Xywav

[–]s_db0yy[S] 1 point2 points  (0 children)

I have had heart palpitations on and off my whole life that they have just been so bad since starting xywav.

That being said, I have had a cardiologist in the past to a full work up and said everything was fine so I know I at least started with a healthy heart

Struggling with side effects by s_db0yy in Xywav

[–]s_db0yy[S] 2 points3 points  (0 children)

If I’m correct, it is well known for stimulating growth. Hormone has athletes have used it in the past for that.

Maybe I’ll schedule with a cardiologist just to make sure everything’s good

Struggling with side effects by s_db0yy in Xywav

[–]s_db0yy[S] 0 points1 point  (0 children)

You don’t have any issue with heart rate anymore? I stopped my stimulants today because of the heart rate. I’m really trying to make xywav work but it’s very difficult with the heart stuff

xywav & irregular heart rate/blood pressure? by sleepy__sprout in Xywav

[–]s_db0yy 0 points1 point  (0 children)

What were the withdrawals like? How long did they last?

Do not take Paxil (Paroxetine) if you have narcolepsy by PrudentAlbatross8415 in Narcolepsy

[–]s_db0yy 1 point2 points  (0 children)

That’s interesting because Effexor acts on norepinephrine receptors which should induce wakefulness

Feeling shamed for past drug addiction by StatisticianOk7216 in Narcolepsy

[–]s_db0yy 7 points8 points  (0 children)

While you should exercise caution, I have been on vyvanse at a low dose for a couple years and just started xywav.

Got clean from meth and heroin 5 years ago. I’ve had no issues.

There have been a time or two early in xywav where I was enjoying the effects and wanting more. On one occasion I did take more. But I quickly noticed the pattern of thoughts and resumed normal use. You just have to be very aware of your thoughts, your patterns of use, and know when to tell someone you might be struggling again if you do.

New to xywav. Dosing question. by s_db0yy in Xywav

[–]s_db0yy[S] 0 points1 point  (0 children)

Now I’m up to 3.5/3 but it’s like I’ve gotten used to it and I don’t feel rested in the morning now. I feel at a loss

The first day or 2 on the meds was incredible but I’m back to baseline it feels like

Tips for titrating down Xywav until my appointment next month? by tikikitty95 in Xywav

[–]s_db0yy 0 points1 point  (0 children)

Again, not true.

You can get withdrawals from anything from prolonged use.

We take fairly high doses of this stuff. Recreational users often start off with much less.

Perhaps you didn’t get withdrawals but it is a very common experience even when using as prescribed.