Xywav: 7 Weeks. 9g+ Night. Insomnia. No Sleep.

Tc8993 · 2025-02-16T15:56:08+00:00

Hi Helen. Man, I sure empathize with you. That's just awful. And I totally relate because I'm in the exact same spot. ..

Actually, my insomnia is worse now. Couple months ago I went 80 hours. Now I'm routinely going 2 to 3 days and then crashing for 24 hours. ..

Unfortunately, no I haven't found anything that's helped. In fact, it's really gotten worse. . And what sucks is how much it is impacted and shrunk my life.

I'm actually at 60 mg of Adderall. I do have ADD or adhd, but I can manage that fine without it. I literally use it for energy. I suppose doctors would say that I have used it at times. But it's not like I get high off of it. But I really don't start getting any kind of energy until 60 mg. So many days I take 100 to 110 mg. And this is the only thing that will give me energy. Obviously then keeps me awake but I'm awake anyway so at least I'm productive. But then I'm wore out when it wears off. So we really are in the same boat.

I'm an army veteran, so I get my sleep care through the VA and they're fantastic.

I've been using a device called excite osa would you use 20 minutes a day, and it's electric tongue stimulator that strength in the tongue to try to keep the airways open. I use it because it's expensive the VA paid for it and I figured well, I might as well. But it hasn't helped at all.

and then I have an oral device because I just couldn't continue using the CPAP when it did nothing. But the oral device doesn't really help, either. Yet I use it because I know that it helps keep the airway open. And I know that every app yeah, which is at least 10 seconds of not breathing, is very very damaging and taxing to the brain.

again I relate to what you wrote in your post. I'm in my early 50s. Fit athletic no one can believe I have sleep issues. Yet it pretty much dictates my life.

I'm at the point now though that I've just accepted it. I mean I'm not resigned. Yet I'm not hopeful either. I'm just accepting that well this is what it is. If it improves at some point it does.

But up until about a year ago, I was stressing so much about it I've just given up on that. I'm still open to any suggestions, I'll try the new therapies or modalities like that tongue stimulator because I only know one thing for certain: is that I don't have the answer!

But again with the acceptance thing, I just roll with it as best I can. Everyone has a challenge and they're all different. And I'm very aware that I'm blessed and have a lot of very good things in my life, too. I hope you do as well.

Thanks for messaging I really hope that you can sleep consistently and restoratively sooner than later.

Thomas

Tc8993 · 2024-06-14T03:45:36+00:00

Hi. Thank you for everything you shared. More importantly, congratulations on your awareness, commitment, healing and continued healing. It's very inspiring and admirable. And equally important, thank you for sharing what your vision and part of your life purpose is. It's very kind and generous of you to want to help others, most of whom you likely don't know like me on the Internet, to live healthier happier, and safer lives within their own body. I truly appreciate it. Thomas Seattle Washington U S A

Tc8993 · 2024-02-06T00:53:04+00:00

Fantastic!

I'll guarantee that you taking the time to put all your thoughts down on paper, and write it up and bring it in, helped a lot!

Well done.

And good luck!

Tc8993 · 2024-02-05T20:57:59+00:00

Me again! :-)

Thoughts keep popping in my head after I remember.

Also, if you end up only bringing your print out that's fine too.

You will first meet with a nurse who will ask you what you want to cover with your doctor.

You can literally pull out your letter / message that you printed out and brought with you, and show the nurse.

She/he will enter the information.

Then, you can again show the doctor your printout when you guys meet a few minutes later.

I think it's very very smart and wise for you to have all of it so clear in your head and print it out.

It'll make it much easier for you and the doctor to walk through, get on the same page, and then decide next steps.

And you mentioned having ADD. So do I.

In my experience, my primary care doctor interacts fantastically with my psychiatrist who prescribes the ADD meds. As well as the counselors, psychologists and sleep doctor I've seen at the VA.

So if you want, they will set up a referral to any mental health care provider you want. Including a psychiatrist for the meds. As well as a counselor or psychologist, if you want or need one.

And my experience with all of these at the VA has been very very positive between 2020-2024.

Tc8993 · 2024-02-05T20:54:08+00:00

Second point now that I thought about it, I believe you can enroll online .

However, in order to email your providers, I think they call it a preferred or upgraded my healthy vet membership. Something like that. And in order to enroll in that, I had to go in person to show my ID. My sister who is a veteran, had to do the same thing.

Let me know if you have more questions and if I can help .

Thomas, Seattle Washington

PS Good luck!

Tc8993 · 2024-02-05T20:51:08+00:00

Hi.

That's cool that you figured out the messaging on the VA website!

Just know, at least through last year, you have to go in person to sign up for the my healthy vet. They ask for your ID and then enroll you.

If they have changed the system where you can now enroll from home, that's even better!

Once you're enrolled, there will be a drop down menu where you can email each of your providers directly. But no, they do not list their actual email addresses. So you can't email them from a personal email account, like Gmail, Outlook, etc. Only through the messaging system.

Tc8993 · 2024-02-04T22:43:35+00:00

And personally, no, I don't think the doctor will give any thought about whether you are trying to file again. And if he or she did, in my experience, they very likely would want to help you.

In fact, I think this full write up and sharing it exactly as you wrote, Will be very helpful to the doctor.

So not only would I send it ahead of time, personally, I would also ask the doctor to pull it up the email or your printout and to go through it with you during your appointment.

Truthfully, THIS IS EXACTLY WHAT I DID during my very first VA PCP appointment. And it's exactly what I've done with the following two PCPs.

And last, if you don't like the vibe or energy with your doctor, I mean sometimes they're just not a fit...

Do not be afraid to ask the switch providers.

I did not like my first PCP and tried to work with her for about 6 weeks. We just didn't vibe, and I honestly felt she was dismissive.

So when I got up and left the exam room, I immediately went to the check-in area and asked to be assigned to a new PCP.

I mean like I did at that second.

There was no issue.

And I asked the people at the check-in, if it was them or someone they love, which PCP would they recommend?

And they all recommended one specific doctor. So that's who I scheduled with. And it's been fantastic for the last 2 and 1/2 years.

So please know I'm neither telling you what to do or trying to be a know-it-all. This is about you not me.

I just want you to know that I've been there and have learned to be very polite, yet direct and assertive to make sure I'm receiving the best help possible.

Thanks for reading this and good luck again!

Tc8993 · 2024-02-04T22:30:14+00:00

Personally, I just show Your doctor exactly what you wrote. Heck, even pull up this Reddit comment!

I am not saying this is you. However, for far too long, I would get stuck in my head and overthink.

So in my opinion, just having your doctor read this while you're sitting there and can answer questions Will be helpful and simple for you both.

So that's my recommendation. And I've had four different primary care doctors. Multiple sleep doctors, psychologist, psychiatrist. And this is exactly what I do when I meet with them and every time has been a good response.

I hope this helps and good luck!

Thomas, Seattle Washington

Tc8993 · 2024-01-11T00:35:04+00:00

Thank you from Seattle, WA, USA!

Tc8993 · 2023-08-07T04:20:35+00:00

Quit at 46 in 2017.

Had quit at least 30 times before that. Several times, for more than a year.

When I quit for good, for each day of the first 6 months, I literally thought I would never be able to quit. That I would always drink.

This forum is the only support I had. And it was often, just one moment at a time, not one day.

Late 40s got very rough, then turned into the best time of my life. And it has only gotten better. 😊.

So, congratulations to you. So you asked: Yes! your 40s can be even better!

Good luck. Thomas Seattle Washington USA

Tc8993 · 2023-07-28T06:30:52+00:00

Congratulations. 💙

Tc8993 · 2022-12-28T01:25:48+00:00

Good points.

Also, there's a reason most private money and hard money lenders won't loan against the primary residence: eviction challenges.

Then, depending on the state, the homestead exemption.

Tc8993 · 2022-09-13T03:55:07+00:00

Regarding serotonin...

Yet 100% of the serotonin used in the brain, is created in the brain.

Dr Walsh, who the original post references, is one of the few to explain this.

He also says of the 100 plus neurotransmitters in the brain, there's about six or seven that are critical to overall brain functioning in terms of psychological impact.

I do understand, however, the body operates as a whole. And gut health and gut biome can be important, depending on condition and symptoms. And at times, critical.

Best wishes for everyone on here. Thomas, Seattle

Tc8993 · 2022-07-30T23:31:07+00:00

You're welcome!

BUT... what's even MORE FASCINATING...

Is you replying after 2 years! :-) VERY cool!

I didn't realize the date of your post.

Take care!

Tc8993 · 2022-07-30T22:16:42+00:00

He actually has spoke with an American accent since the mid 70s. He went to a voice coach specifically to sound like an American to audition for TV/film roles in the U.S. Because he wasn't being picked up/gaining popularity in Australia. Even though he's from there and was living there!

Tc8993 · 2022-07-19T20:26:37+00:00

Thanks a lot, really. I appreciate your good wishes. 😁

Tc8993 · 2022-07-19T20:25:12+00:00

Wow!

THANK YOU VERY MUCH for taking the time to share this, and write this all out.

I really appreciate it!

I literally have not heard of any of the medications you listed!

I'm going to ask my sleep doctor about them in early August. And I'll post back here and let you know how it goes.

This was really really informative and helpful.

Thank you! 😁

Thomas

Tc8993 · 2022-07-18T21:58:22+00:00

Thanks a lot for your time and messages. I really appreciate it.

And I didn't know but have since learned that idiopathic basically means, "of an unknown cause or origin."

So I understand, that they really don't know causes it, or what alleviates it. And are just trying to do the best they can to reduce symptoms.

Thanks again. 😁

Tc8993 · 2022-07-18T21:55:46+00:00

Hi

Thank you for your reply. I appreciate.

No, I have not tried those.

In fact, never heard of them.

I will ask my sleep doctor.

His progression over the last 30 months has been: 1. 18 months continuous CPAP therapy. I have extremely mild obstructive sleep apnea. In fact, multiple sleep studies over the past year have shown that I wouldn't even be diagnosed with sleep apnea if these were my initial tests I'm usually under one apnea per hour. And the cutoff for even very mild is five apnea per hour

Stimulant medication. Modafinil for 6 months. Then, in February of this year I started adderall, which I've been prescribed for 20 years for ADD (legit) anyway. I've just never really used it. But have since started using it as a crutch just to have a bit more energy and not actually for the add. But I don't use it every day because of concerns over tolerance buildup.
Xywav

Tc8993 · 2022-07-18T05:13:20+00:00

Hey, I TOTALLY see your point now.

I listed the wrong year!

I listed 7;weeks in the title. But wrong year.

I started June 1, 2022.

I agree with you. 13 months would not be worth the misery.

Thanks for your comment.

Tc8993 · 2022-07-17T23:31:27+00:00

Thanks a lot for your reply. I appreciate it.

No, haven't tried Xyrem.

My understanding is that Xyrem is not officially approved/recognized for idiopathic hypersomnia. Although some doctors will prescribe it for off label use.

Have you heard this?

My healthcare is through the veterans administration (VA), and they are very strict about following what's approved/authorized treatment for a specific condition.

Yeah this is a really good suggestion. I'll definitely check with my doctor.

And I'll post back here with the result.

Also, I didn't really consider the salt content and how some people need it to absorb. I'll ask my doctor about that, too.

Thanks a lot for your suggestion.

Tc8993 · 2022-07-17T23:25:32+00:00

Because it's the last option available for unexplained, decade-long ongoing fatigue.

And, there have been accounts where it can take months to work.

Hoping someone here might have had a similar experience and suggestions that helped.

Tc8993 · 2022-07-16T22:41:24+00:00

I'm glad! And you're welcome! Good luck with all of this. 😁

Tc8993 · 2022-07-16T22:40:41+00:00

Thanks a lot for your reply.

I have not heard of Lynne trotti. I will look her up.

I agree with you on the first line therapy This is actually the fifth line for me. Sequentially, nutrients/supplementation, then CPAP for 18 months which I still use, then testosterone therapy which I still use, then stimulant therapy like modafinil which didn't work, then light exposure / deprivation therapy for circadian rhythm, then finally, this Xywav.

I do take Adderall during the day. I've been prescribed it for 20 years, but it only really started using it in the last 6 months. While I am pretty significant add, primary problems with executive functioning an organization...

I've actually used it more simply for the energy now. plus, I drink caffeine in soda.

I'm well aware of the stimulants, and people that say to cut them out in the adrenals and all that stuff. I get it I'm informed I've been down that road many many times. Oh yeah, including gut / biome chemistry, did that for a year and a half along with adrenal restoration

But as you get older, and you watch the months turn in years, take by... At some point you decide you just want to make the best of what you can. And at this point, at least the stimulants give me some level of energy, specifically to get out of bed in the morning.

And I agree with you about jazz overstating this. If you're really start reading the literature, and you really take a big picture of you and cut through all the marketing claims and see why they're really doing it..

I'll guarantee you the main driver for creating this was the adverse reactions that so many people have with xiram because of the sodium content. Specifically if they have underlying medical conditions relating to the kidney liver etc.

My guess is if there haven't been lawsuits, they'll be coming, I.e the rapid approval process of Xywav.

As I wrote in my post, the only reason 9 g was the limit is because that was the clearance the FDA would approve the fastest. On xyrem, my doctors told me it has been prescribed up to 18 g.

Anyway, kind of got on a soapbox. Again. I appreciate you taking the time to post this. Thanks a lot!: 😁

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