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Ahhh School Starting And No Medication Advice Please?


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#1 Kayra

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Posted 28 September 2012 - 04:05 PM

Hi, my name is Kayla, I was diagnosed with N without cataplexy a year ago. Because I have medi-cal insurance it can be incredibly difficult to get approval for medications. So basically my local doctor just up and disappeared one day. The office STILL hasn't found a replacement and its been months. They did however have a lovely doctor who filled in for emergency situations with patients. Because he was not a regular doctor there his perscription wasn't approved by my insurance. I was then told to go to my primary and she refused to submit a tar for the medication because it's a controlled substance. I'm on 3.75 a night for xyrem but it's just not cutting it. I have lecture for 10 hours straight pretty much (20 minutes between each class which I spend the entire time walking to the next class) I also just switched from a junior college semester system to a university quarter system. I'm terrified I'm going to flunk out. D: Any advice on how to get by without meds? Coffee doesn't work for me at all. The worst part is that most of the classes are in huge auditoriums.

#2 Hank

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Posted 28 September 2012 - 05:08 PM

Hi, my name is Kayla, I was diagnosed with N without cataplexy a year ago. Because I have medi-cal insurance it can be incredibly difficult to get approval for medications. So basically my local doctor just up and disappeared one day. The office STILL hasn't found a replacement and its been months. They did however have a lovely doctor who filled in for emergency situations with patients. Because he was not a regular doctor there his perscription wasn't approved by my insurance. I was then told to go to my primary and she refused to submit a tar for the medication because it's a controlled substance. I'm on 3.75 a night for xyrem but it's just not cutting it. I have lecture for 10 hours straight pretty much (20 minutes between each class which I spend the entire time walking to the next class) I also just switched from a junior college semester system to a university quarter system. I'm terrified I'm going to flunk out. D: Any advice on how to get by without meds? Coffee doesn't work for me at all. The worst part is that most of the classes are in huge auditoriums.


I'm so sorry. I think that is terrible.

I just have a few questions:
1. Were you on Xyrem only. I cannot tell if you are looking for a Xyrem prescription or a daytime stimulant prescription or both.

2. Who is/was prescribing your Xyrem? Xyrem requires a prescription each month. If your doctor who left was also prescribing Xyrem, you sure will need to find someone soon.
- my Xyrem and Adderall are prescribed by the same doctor.

3. If you just need a stimulant, why can't your primary care doctor just prescribe one. Any doctor (in good standing) can write a controlled substance for their patient.

If you can clarify, I will check back later.

#3 sleepylune

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Posted 28 September 2012 - 08:34 PM

Is there a counselor or disability services rep you can talk to at your school? They might be able to help you find a doctor that accepts your insurance. It would be helpful to speak with student services and let them know about your narcolepsy in case this schedule leads to low grades. They can't help you late in the semester if they had no idea in the beginning.

#4 DeathRabbit

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Posted 29 September 2012 - 03:08 AM

Is there a counselor or disability services rep you can talk to at your school? They might be able to help you find a doctor that accepts your insurance. It would be helpful to speak with student services and let them know about your narcolepsy in case this schedule leads to low grades. They can't help you late in the semester if they had no idea in the beginning.

Yeah, what she said, tell people. Other than that, I have found a double dose of Unisom capsules before bedtime to be moderately helpful. Also, if you live in a medical marijuana state (and are not entirely opposed to that avenue of treatment or prevented by professional obligations), I've heard a small dosing of THC before sleep can be helpful as well.

#5 Kayra

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Posted 29 September 2012 - 12:32 PM

I am currently just on xyrem and my primary straight up REFUSED to give me a prescription because she said it was controlled. I don't know if she thought I was a junkie or what but it was really frustrating. The doctor who prescribed my xyrem is straight up gone. I have no idea where he wandered off to. Not like he was really around much at the office anyways. The xyrem still comes in the mail.



I'm so sorry. I think that is terrible.

I just have a few questions:
1. Were you on Xyrem only. I cannot tell if you are looking for a Xyrem prescription or a daytime stimulant prescription or both.

2. Who is/was prescribing your Xyrem? Xyrem requires a prescription each month. If your doctor who left was also prescribing Xyrem, you sure will need to find someone soon.
- my Xyrem and Adderall are prescribed by the same doctor.

3. If you just need a stimulant, why can't your primary care doctor just prescribe one. Any doctor (in good standing) can write a controlled substance for their patient.

If you can clarify, I will check back later.



#6 Kayra

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Posted 29 September 2012 - 12:34 PM

Is there a counselor or disability services rep you can talk to at your school? They might be able to help you find a doctor that accepts your insurance. It would be helpful to speak with student services and let them know about your narcolepsy in case this schedule leads to low grades. They can't help you late in the semester if they had no idea in the beginning.


Yeah, I'm going to the Disability resource center but it's a bit difficult getting adequate documentation when there is no doctor. D: I'm also unfamiliar with what kind of documentation the DRC would want and how long it would take to process.

#7 Hank

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Posted 29 September 2012 - 05:12 PM

I am currently just on xyrem and my primary straight up REFUSED to give me a prescription because she said it was controlled. I don't know if she thought I was a junkie or what but it was really frustrating. The doctor who prescribed my xyrem is straight up gone. I have no idea where he wandered off to. Not like he was really around much at the office anyways. The xyrem still comes in the mail.





Ok, got it. That really is frustrating. In order to prescribe Xyrem, doctors actually have to go through an application process to be approved, so they know what they are doing.

If you ask the administrator or office manager of the x-doc to call for an appointment with a new doc on your behalf, that may help you get in somewhere faster. They do have an ethical obligation for their patients. If the office requests an urgent appointment as a "professional courtesy" and sends/faxes your records directly to the new doc right away, you could be in quickly. These are medical professionals- they are obligated to help you- make sure they do.

I would also suggest calling the SDS pharmacy (866) 997-3688 and ask them for suggestions.

On the Xyrem Success Program web page, to find a physician, they suggest :
-A list of accredited sleep disorders centers in the United States can be found at:American Academy of Sleep Medicine
www.aasmnet.org

National Sleep Foundation
www.sleepfoundation.org

If the office is unwilling to help, find out what hospital they are affiliated with and file a complaint- this is not cool.
You are already enrolled in the Xyrem database- you just need a new doctor. Call several and get the soonest appointment available.
Go to your x-doctors office and request a copy of your medical records (they may charge you a small fee). They will need to transfer your records to the new doc, but can sometimes drag their feet.
Make copies (keep one for yourself) and bring/mail a copy with you to the new doc before your appointment so he/she has everything you need, so no time is wasted.
When you call for an appointment, tell them your situation- your doc just left and you have no medication. Tell them you have a copy of your records and you are already enrolled in the Xyrem database, so they know you are legitimate. If they have no reason to question your motives, they will be more likely to help, so be prepared.
Ask them to squeeze you in for the soonest available appointment. If you do this leg work, you will make it easier for them to help- applying for Xyrem is a lot of paper work, but all of that is done.

Good luck

#8 Kayra

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Posted 04 October 2012 - 02:17 AM

The only problem with that is that they have not yet replaced the doctor (I live in a pretty small town) and getting a new one would take forever due to the limited coverage with my insurance. I am however fortunate since I will be seen and treated by Dr. Mignot (I've already seen him once and soon will be doing a new FOURTH sleep study) The only bummer to this is it takes month of advance planning to get to an appointment. They did do a courtesy visit but the doctor not being of that town got the tar rejected. :( Also I should mention I have narcolepsy without cataplexy and the xyrem isn't cutting it at all when it comes to ten hours straight of class. Last semester I was taking classes on my feet and now it's more apparent of the medication needs. I will contact the pharmacy and see what I can do. But thank you sooo much for the advice.


Ok, got it. That really is frustrating. In order to prescribe Xyrem, doctors actually have to go through an application process to be approved, so they know what they are doing.

If you ask the administrator or office manager of the x-doc to call for an appointment with a new doc on your behalf, that may help you get in somewhere faster. They do have an ethical obligation for their patients. If the office requests an urgent appointment as a "professional courtesy" and sends/faxes your records directly to the new doc right away, you could be in quickly. These are medical professionals- they are obligated to help you- make sure they do.

I would also suggest calling the SDS pharmacy (866) 997-3688 and ask them for suggestions.

On the Xyrem Success Program web page, to find a physician, they suggest :
-A list of accredited sleep disorders centers in the United States can be found at:American Academy of Sleep Medicine
www.aasmnet.org

National Sleep Foundation
www.sleepfoundation.org

If the office is unwilling to help, find out what hospital they are affiliated with and file a complaint- this is not cool.
You are already enrolled in the Xyrem database- you just need a new doctor. Call several and get the soonest appointment available.
Go to your x-doctors office and request a copy of your medical records (they may charge you a small fee). They will need to transfer your records to the new doc, but can sometimes drag their feet.
Make copies (keep one for yourself) and bring/mail a copy with you to the new doc before your appointment so he/she has everything you need, so no time is wasted.
When you call for an appointment, tell them your situation- your doc just left and you have no medication. Tell them you have a copy of your records and you are already enrolled in the Xyrem database, so they know you are legitimate. If they have no reason to question your motives, they will be more likely to help, so be prepared.
Ask them to squeeze you in for the soonest available appointment. If you do this leg work, you will make it easier for them to help- applying for Xyrem is a lot of paper work, but all of that is done.

Good luck



#9 Megssosleepy

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Posted 04 October 2012 - 10:08 AM

Okay, so I am going to be trying to do this the natural way... but still on the Xyrem. I'll bring the info to work tomorrow scan it and email it to you. Something tells me it may be a little pricey, but once I get going and see how I feel I will check in with you...
I would suggest 5 hour energys, once again they are a little pricey buttttt... its the only thing that got me through last semester... don't chug it just sip on one through out class!

Where you at one point on a stimulant? Your PCP should not deny you your meds! Can you show her proof of being on it in the past and print out some info about N! She prolly is clueless like the lady I saw yesterday! I know its very hard to stand up to a doctor, but it seems like this would be a time to take a deep breath write it down and just do it!

Good luck! If you want the notes I have let me know!

#10 Kayra

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Posted 04 October 2012 - 10:45 AM

I'd love to have the notes! Also, I have tried a stimulant twice in desperation. The difference it made was insane. I had a 1 hour 40 minute class I fell asleep in 4 times (no meds) Then had a 10 hours straight with three lectures and two movies, didn't even nod off once. It was a completely new experience. I will get on 5 hour. How many would you recommend taking for a 10 hour session? They don't usually last five hours in my experience.




Okay, so I am going to be trying to do this the natural way... but still on the Xyrem. I'll bring the info to work tomorrow scan it and email it to you. Something tells me it may be a little pricey, but once I get going and see how I feel I will check in with you...
I would suggest 5 hour energys, once again they are a little pricey buttttt... its the only thing that got me through last semester... don't chug it just sip on one through out class!

Where you at one point on a stimulant? Your PCP should not deny you your meds! Can you show her proof of being on it in the past and print out some info about N! She prolly is clueless like the lady I saw yesterday! I know its very hard to stand up to a doctor, but it seems like this would be a time to take a deep breath write it down and just do it!

Good luck! If you want the notes I have let me know!



#11 Megssosleepy

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Posted 04 October 2012 - 10:52 AM

I'd love to have the notes! Also, I have tried a stimulant twice in desperation. The difference it made was insane. I had a 1 hour 40 minute class I fell asleep in 4 times (no meds) Then had a 10 hours straight with three lectures and two movies, didn't even nod off once. It was a completely new experience. I will get on 5 hour. How many would you recommend taking for a 10 hour session? They don't usually last five hours in my experience.


Bring 2, also B vitamin complex will help... during all day meetings at work I would take a swig every time the last one wore off! So you were never prescribed a Stimulant? Strange they would give you Xyrem first and not start with a low dose Stimulant!

#12 magpie

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Posted 05 October 2012 - 10:23 AM

So, are you looking for a sleep specialist, neurologist or just a doctor that will give you the RX? I would look into seeing what options are available at your local or nearby hospital. I would assume that they have a neurologist on staff and may even have a sleep center that could help you possibly. Also a lot of hospitals will have people who are dedicated to just helping patients figure out insurance! If none of that works see if you can find a psychiatrist that takes your insurance and maybe has some experience with sleep disorders. Many psychiatrists are approved to prescribed controlled medications.

Good luck!

#13 Kayra

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Posted 11 October 2012 - 01:41 PM

Thsnks everyone! now I'm on nuvigil and it's having some weird effects. If anyone has experience with it I'd appreciate the feedback and opinions on it. I guess one of the side effects is anxiety, does anyone know how long this is supposed to last? It's really really hard to study when these fits happen. D: It's interfering with my regular morning scheduled study time. I've also already fallen asleep in class once while on it. I've been on it the last 4 days. There is still no sleep specialist locally and it takes FOREVERRRRR to get an appointment at Standford (for a good reason the doctor is brilliant) but still, this is such a pain.

#14 DeathRabbit

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Posted 11 October 2012 - 02:22 PM

Thsnks everyone! now I'm on nuvigil and it's having some weird effects. If anyone has experience with it I'd appreciate the feedback and opinions on it. I guess one of the side effects is anxiety, does anyone know how long this is supposed to last? It's really really hard to study when these fits happen. D: It's interfering with my regular morning scheduled study time. I've also already fallen asleep in class once while on it. I've been on it the last 4 days. There is still no sleep specialist locally and it takes FOREVERRRRR to get an appointment at Standford (for a good reason the doctor is brilliant) but still, this is such a pain.

I found the vigil drugs to be lackluster overall. Performance enhancement was marginal and I didn't really enjoy feeling like I was floating outside of my body watching some stranger live my life.

#15 Kayra

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Posted 11 October 2012 - 05:04 PM

I found the vigil drugs to be lackluster overall. Performance enhancement was marginal and I didn't really enjoy feeling like I was floating outside of my body watching some stranger live my life.

I just felt really strange and empty then had a strange panic attack type thing plus I fell asleep TWICE I mean I can't afford to do that on the quarter system. D: Any recommendations for what works better?

#16 DeathRabbit

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Posted 11 October 2012 - 06:03 PM

I just felt really strange and empty then had a strange panic attack type thing plus I fell asleep TWICE I mean I can't afford to do that on the quarter system. D: Any recommendations for what works better?


Not really. Adderall did great for a while. Still had anxiety, but it was controllable and I could think again. It was really only effective for a few months tho before my body decided to be a dick and not respond anymore. Just switched to focalin xr. Jury is still out, I had a good day today, but the last two were terrible. At least the doc gave me a coupon so a year's supply of it is free.

#17 Kayra

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Posted 16 October 2012 - 03:00 PM

Not really. Adderall did great for a while. Still had anxiety, but it was controllable and I could think again. It was really only effective for a few months tho before my body decided to be a dick and not respond anymore. Just switched to focalin xr. Jury is still out, I had a good day today, but the last two were terrible. At least the doc gave me a coupon so a year's supply of it is free.


Nice! On the coupon that is. So the nuvugil is pretty awful in terms of the anxiety. I also started developing an unusual rash on my hands and I'm going o get it checked out. The primary agreed that it was pretty unusual, the only bummer is being off medication for who knows how long when midterms are coming up.

#18 Sleepin_Hippie

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Posted 23 October 2012 - 04:29 PM

Is there a counselor or disability services rep you can talk to at your school? They might be able to help you find a doctor that accepts your insurance. It would be helpful to speak with student services and let them know about your narcolepsy in case this schedule leads to low grades. They can't help you late in the semester if they had no idea in the beginning.

Have you ever tried taking Melatonin to aid with sleep? Its not nearly as good as Xyrem but it seems to help me stay asleep better and its the natural hormone in your brain that promotes sleep already so its non habit forming and has very little occurrence of side effects. You can find it at just about any pharmacy over the counter. I am on 400 mg a day of Provigil but I still find supplementing with energy drinks that aren't too high in Caffeine (I prefer NOS because it doesnt taste too bad to me and it doesn't make me feel as jittery) really helps me through the exceptionally sleepy times.

You may also look into applying for disability/social security. I am on disability and receive medicare which adequately covers all my N medical expenses and since Provigil very recently went generic most Medicaid providers will now cover it. Nearly everyone gets turned down the first time for disability but get a lawyer, appeal the denial, and in most cases, especially if you have a sketchy work history, you can get approved for disability on the basis of Narcolepsy. It takes awhile for it to kick in but if you get approved stay on your caseworker and they will get everything going a lot faster and the Medicare starts right away after you get approved.

If you're in college, got to the disability services center and they can make a letter for you to give to your teachers that provides info about any accommodations you need, such as more excused absences and tardies or more time or different environments to take tests and such. Sometimes they can accept affidavits from employers, acquaintances etc to approve the letter.

Its a long hard battle and I've turned what should have been a 3 year degree program into a continuing 5 year education due to my regular tardies and absences causing me to fail classes but I wish you the best of luck.

#19 Sleepin_Hippie

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Posted 23 October 2012 - 04:41 PM

Thsnks everyone! now I'm on nuvigil and it's having some weird effects. If anyone has experience with it I'd appreciate the feedback and opinions on it. I guess one of the side effects is anxiety, does anyone know how long this is supposed to last? It's really really hard to study when these fits happen. D: It's interfering with my regular morning scheduled study time. I've also already fallen asleep in class once while on it. I've been on it the last 4 days. There is still no sleep specialist locally and it takes FOREVERRRRR to get an appointment at Standford (for a good reason the doctor is brilliant) but still, this is such a pain.

I was on Provigil for a long time but when Nuvigil came out my insurance switched me to Nuvigil. Even though it is supposedly almost the same it worked WAAAY different for me. It barely kept me awake at all and I also felt weird and disoriented. I finally got switched back to Provigil and although it doesn't completely keep me going it definitely seems to work much better than the Nuvigil did. I am prescribed 2 200 mg tabs of Provigil a day and I find that if I take 1 1/2 about 2 hours BEFORE I want to get up that it works much better and lasts longer through the day than if I try and take it when I get up and then try to drudge my way through till it starts working. I just have to be sure I take it at the same time every day (for the most part) and that I actually get up at the 2 hour mark and don't let myself sleep through it. Otherwise I will still feel groggy and sluggish and often end up with a headache. I then take the other half pill in the late morning/early afternoon and it keeps me pretty well at least awake for the rest of the afternoon.

This is the ONLY way Provigil has worked for me and I have been on it (off and on) for over 12 years now. I took adderall, concerta, and ritalin and all three not only didnt keep me up for long but they gave me terrible anxiety, irritability, and heart palpitations. I wouldn't suggest them for N treatment with my experience.

#20 Sleepin_Hippie

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Posted 23 October 2012 - 04:47 PM

Nice! On the coupon that is. So the nuvugil is pretty awful in terms of the anxiety. I also started developing an unusual rash on my hands and I'm going o get it checked out. The primary agreed that it was pretty unusual, the only bummer is being off medication for who knows how long when midterms are coming up.

My doc said a rash is a sign of an allergy to the medication that can be very dangerous if you continue to take it.