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About Braden

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  1. Is this for real? Are they seriously discontinuing the forums for good? I feel this is a serious disservice to narcoleptics. How else are we suppose to come together and discuss our rare disease with one another? This doesn't make any sense
  2. I'm not sure. It's either cross tolerance between the two or I'm a unique situation. Basically, ive only ever gotten an 1hr 45 min-2hrs sleep on each dose of xyrem before it wears off. Then it's impossible for me to go back to sleep. Xyrem just hasn't been giving me enough sleep I don't care how deep they say it makes you sleep. I was prescribed xyrem in December and ever since I've been steadily building up a tolerance to it to the point if I take a stimulant during the day the medication isn't strong enough to sedate me during the night. In February I began alternating with baclofen on some nights and intially it worked. However, tolerance has steadily built and baclofen is no longer putting me to sleep at night. As of today, I've been off stimulants for 1 month and while the xyrem is still working the baclofen is giving me no sleep whatsoever. This is very concerning and I barely made it through finals. I have an appointment with a neurologist at the end of the month so hopefully we can get to the bottom of what's going on.
  3. I've been alternating xyrem and baclofen for the past few months. However, for me both medications are begining to become ineffective. Out of curiosity, how many hours of sleep were you getting on each xyrem dose?
  4. Hey guys, I'm curious about this combination. As I understand it, belsomra is a hypocretin antagonist that essentially puts the user in a chemically induced narcolepsy. While they say belsomra is contraindicated for narcoleptics this doesn't really make any sense. For someone with 90-95% loss in their hypocretin producing neurons wouldn't taking belsomra be just like taking a sugar pill? Now in type 2 narcolepsy, the issue isn't necessarily that they have a hypocretin deficiency. They more or less suffer from sleep fragmentation that leads to excessive daytime sleepiness. This sleep fragmentation could be the result of a greater hypocretin to gaba ratio causing reticular activation to consistently flare up all night thus causing fragmented sleep. So, if it's safe for type 1 narcoleptics with essentially no hypocretin producing neurons remaining to take xyrem than theoretically wouldn't it be safe for type 2 narcoleptics to combine xyrem and belsomra in the interest of extending sleep to 8-9 hrs while achieving two big R.E.M. periods in between? I think the answer is yes. Type 2 narcoleptics struggle with xyrem because the short half life causes us to wake up every 1hr 45 min-2 hrs or so. When the medication wears off, the dopamine rebound wakes us up and makes it nearly impossible to fall back to sleep unless we take another dose. We may get our R.E.M. but we are not spending enough time in the other stages of sleep either. I understand that belsomra can linger and potentially be an issue in the morning. However, that's why we are prescribed stimulants that would eliminate this potential hazard. Anyway, sound plausible? Your thoughts?
  5. Exactly and tbh orphan medical who originally "developed" sodium oxybate did anything but. GHB has been around since the 1960's and used to be in supplements you could get at your local vitamin store for $30 a month! So it's not surprising that ghb was convienetly made a schedule 1 at the same time the FDA was working to approve it for orphan medical... lmao and then there's modafinil. A orphan stimulant that was developed "exclusively" for narcoleptics yet their sales have now exploded. Lol they have orphan designation yet only 20% of their customers are narcoleptics! So it's conceivable that modafinil would have been developed even if the orphan medical act didn't exist.
  6. Ya know tbh we never know whose on these boards reading what we all write. Whatever party has a vested interest in treating narcolepsy would likely be monitoring what us narcoleptics are talking about. Lol so just by talking about we may be having a bigger impact than we realize.
  7. Got it too. I was intially petrified. With everything going on with the lawsuits and the FDA approving a generic ive just been waiting for a letter telling me my patient assistance is ending any month. On the bright side this isnt it. But they try to "pitch" this care connect thing as a way to let you in on more services you may qualify for. But anyway, it's extremely unethical and frightening how much power these power have over a medication i depend on to function.
  8. As a college athlete this is a MAJOR battle with xyrem. I'm always hungry. On top of it, my metabolism is extremely fast and that even causes me to hyper metabolize the xyrem which really sucks because it wears off even sooner. While the advice I'm about to give should not be construed to be applied to everyone. I talked it over with the SDS pharmacy and they agree that it's fine. Xyrem is absorbed rapidly and completely in your blood stream in a manner of 30-40 minutes. So, theoretically speaking if something were to enter your stomach after this time it would not interfere with absorption. So this is what i do. I take a little snack with me to bed and set it next to my night stand with the medicine. I take the dose and try to fall asleep without eating. However, if after 40 minutes+ I still can't fall asleep because my hunger pains are keeping me up I engulf the snack on my night stand and then fall asleep satisfied. Like I said, I'm not saying EVERYONE should take this advice I'm just saying it's something that works for me that the sds pharmacy confirms is ok for certain individuals to do. No reason anyone should have to lose precious sleep because their stomach is rumbling and causing them to toss and turn.
  9. Now valproic acid(depakote) sounds interesting. A gabaergenic that could help. The only thing I don't like is that it is an antagonist of androgen receptors. But anyway, since gaba is the mechanism by which the body iniates sleep at night I believe that using medications that potentate it would be the most effective way to promote a natural nights sleep. I've mentioned this before. But one drug that intrigues me is picamilon. It's a combination of gaba and niacin that crosses the bb barrier and splits into gaba and niacin individually. Theoretically, if the brain is deficient it would only take in as much gaba as it needed. It could be just a beneficial for someone with a gaba deficiency as l-dopa is for someone with Parkinson's. ive always wanted to try it but would never combine anything like that with xyrem. We will see what the neurologist says.
  10. Thanks. Problem is I'll scroll the internet and read like I'm doing right now but that actually makes it worse because it just stoakes the fires of the cortex releasing more of its neurotransmitters. Sitting in the hot tub helps. But the second I get out it's like the mind pops up again. Oh and btw. if anyone's curious I took adderall this morning at 9am. I have NOT had any other stimulant but adderall today and yet I find myself once again in this framiliar state of insomnia. Let me be clear, Whatever this is it has nothing to do with sleep hygiene. It's neurological, no ifs ands or buts about it. Idk if adderall is disrupting my glutamate decarboxylase enzym or if my preoptic nucleus is underdeveloped but whatever it is sleep hygiene hasn't and will not do a damn thing to reverse it.
  11. Yes I've had the mslt and polysomn. It showed an average sleep latency of 2 minutes and 26 seconds with two REM periods which constitutes type 2 narcolepsy. After two days without adderall I return to my groggy/sleepy/unmotivated/add/foggy brain narcoleptic self. Adderall does not make me exhibit any manic symptoms. It just gives me better mental clarity and allows me to focus in school. It's like contact lenses for my brain. After adderall in the morning I'll be completely exhausted when evening comes around. I'll lay in bed and stare at the ceiling but the brain never gets sleepy enough to shut off. The cortex just continues to run. This leads me to conclude that the level of neurotransmission in my cortex far exceeds the rate in which my gaba producing neurons can slow it down. I didn't take a stimulant during my adolescence. Thus, I hypothesize that my limbic system synaptically pruned and developed only enough gaba producing neurons to shut off a less active groggy dysfunctional cortex. Now that I take adderall in my 20s, the cortex begins firing on all cyclinders but because my preoptic nucleus tailored itself to my less active teenage cortex there's no way in hell it can slow down without help. This is a very plausible theory and I plan to get the necessary tests this summer to explore further.
  12. While I thank you all for your help. Mr. Hyde was and is not the cause of my brutal insomnia. I only ever took mr Hyde somedays as a preworkout in order to avoid having to take any more adderall. I have and will never take ANY stimulant after 12pm. There have been countless days when I haven't taken mr Hyde or anything but adderall and still won't sleep for nearly two days.
  13. Tell me about it. I was in the ER 3 times over it last October begging someone to sedate me so I could get sleep. I honestly thought I was developing sporadic fatal insomnia and who could blame me? On the extreme end, the longest I went without sleep was 3 almost 4 days. They prescribed me temazepam 15mg initially. However that did nothing, 30mg nothing, 45mg nothing, 60mg nothing. I found it was taking 75-100mg of temazepam just to fall asleep. Next came ambien. Same thing, 10mg quickly became 20 and that quickly became 30mg total nightly with no success. Even Lunesta 6-7mg did NOTHING. Which makes me suspicious. Where exactly are the benzodiazepine and gaba a receptors in the brain? The anterior hypothalamus. Obviously I'm missing quite a bit of neurons in that area. If that's true, than I may also have a glutamate deficiency as well because gaba converts into glutamate and vice versa. Which if confirmed, would be a completely different mechanism to narcolepsy/ADD than is presently recognized by the medical community.
  14. It's literally been torture. If I didn't have the assistance of some gabaergrnics in some form sleep would be impossible. I'm on 30mg adderall instant in the morning. I've built up a tolerance to it so it definetly doesn't feel like it does much anymore. Wears off 2-3hrs later. However, nighttime will come and I will be absolutely exhausted and dysfunctional but sleep just never comes. I never actually get sleepy which makes me think this is a gaba issue. For someone whose as active in the weight room as I am I should be sufficiently sleepy by bedtime for xyrem to do its magic. When I discontinue stimulants for a day or two I go back to my groggy/dysfunctional/sleepy self and the xyrem works wonderful. I didn't take stimulants throughout my adolescent years and that makes me think my preoptic nucleus only developed enough gaba producing neurons to turn off a less active cortex. Thus when I take a stimulant in my 20s the rate of neurotransmission in my brain far exceeds the rate that my gaba producing neurons can slow it downs. Consequently, the cortex runs until it exhausts enough excitatory neurotransmitters and falls to a level of neurotransmission that gaba can overcome
  15. Interesting. I've taken 200mg of modafinil one day but it didn't really do anything for my focus and mental clarity. It basically just kept me from being sleepy. I can't remember if I fell asleep that night on it. The issue right now is that on days I take adderall I don't sleep for two days, literally. Even xyrem is no match. However, after a day or two of no stimulants I'll take xyrem and it'll be the best damn sleep of my life. Which means either adderall is destroying my glutamate decarboxylase enzyme or my preoptic nucleus is fried. Perhaps it's a little of both. Well anyway, I just have to survive this semester so I can get to the neurologist and get this thing solved once and for all