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Will The Emergencg Dept Prescribe Narcolepsy Meds?


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#1 nursemanda

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Posted 09 July 2013 - 12:43 PM

does anyone know if emergency department will prescribe narcolepsy medication on a short-term basis? I am going to be out of my medications soon and am really concerned about trying to get a prescription. I am in the process of getting a new general doctor and a sleep specialist but in the meantime I need to get my medication refilled. a specialist I talked to said that the emergency room should prescribe some medication but I don't know how true this is, does anyone know from past experience?

#2 Hank

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Posted 09 July 2013 - 01:46 PM

You are a nurse so you may have some insight.

The emergency room is for acute illnesses. It is not generally used for prescription refills or treatment of chronic illnesses. I used to work in an ER and Rx refills for pain meds was usually red flagged as drug seeking behavior. Stimulants might be viewed in a similar manner. Since you have a nursing license, I would be careful about taking any actions that could be perceived as drug seeking behavior. The ER would have no medical records to document your diagnosis.

I think your best bet is to find a new primary care physician, transfer your medical records and start fresh. You could always ask the doctors you work with for a recommendation.

#3 DeathRabbit

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Posted 09 July 2013 - 02:27 PM

Well you could bring an old bottle in, showing that you are legit. Could even print out some health insurance claims, showing you are being treated for N. They might help you because stopping those cold turkey can cause serious health issues at the dosage you were at. You could go into serious bradycardia. So I think as long as you bring in proof of prior legitimate treatment, they would comply, maybe try for a smaller dosage, since from the other thread, you weren't taking the full prescription anyway. That would be another sign of good faith. But like Hank said, that should be the last resort, if you can't find a sleep specialist or a pshrink that will take you on such short notice.



#4 Hank

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Posted 09 July 2013 - 02:55 PM

My concern for her is that, in the ER/ED, she will be quickly be labeled with "doctor shopping" or "drug seeking". Showing an empty pill bottle is a red flag for certain medication- especially anything with a street value. I remember a guy coming into the ER where I worked who had an infected tooth with an empty bottle for a pain med. We had already received a fax warning about him making the rounds at other ER's in the state. The police were called and he was arrested and underwent a physch evaluation.

I was almost labeled as a drug seeker while waiting for my diagnosis because "uppers" for the day and "downers" at night were what I was responding to. Once the label gets placed, it is very hard to shake.

So, I learned first hand that being honest to someone who is skeptical can get me into trouble fast. I was very careful- and still am- not to present myself to anyone in a way that would raise these red flags. There are very few of us and a lot of "drug seekers" and we are all looking for someone to believe us and prescribe what we need. We can easily get lumped into the wrong category.

Especially with a nursing license to maintain, and being dismissed from her former doctor, Nursemanda will need avoid false accusation. I would take some FMLA, medical leave or vacation time while waiting for an appointment if necessary.

#5 Hank

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Posted 09 July 2013 - 04:32 PM

Here is a publication that may be helpful to avoid the perception of "drug seeking" behavior

http://www.deadivers.../drugabuser.htm

How many red flags would a Narcolepsy patient set off just by being honest?

I hope this helps you avoid any false accusations.

#6 DeathRabbit

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Posted 09 July 2013 - 04:43 PM

Sometimes it seems like all the red tape surrounding medications with abuse potential does more harm than good. It hassles people with legitimate conditions, and the junkies seem to always end up with their fix at the end of the day anyway. I don't know what needs to be done, exactly, but it's quite apparent that the status quo blows.



#7 Hank

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Posted 09 July 2013 - 05:12 PM

I was prescribed a benzo for sleep by a neurologist after a PSG with fragmented sleep. That same neurologist told me to get more exercise for my excessive daytime sleepiness. So I trained and completed a triathlon with no change in symptoms.

I asked my FP to evaluate me for ADHD. She prescribed me Adderall which worked like a charm. To continue prescribing, she sent me for cognitive testing.

I showed up to the clinical psychologist and gave my history. I had no cognitive deficits indicating ADHD in the testing.

His report, for me, was scathing. I was diagnosed with a "conduct disorder" based on my "self reported symptoms" for which I had no evidence other than my word.

This was humiliating. 2 months later I had an appt with a Sleep Specialist who took over the Adderall Rx from my FP. I was left for several months with no diagnosis and a lot of doubt surrounding my honesty. My MSLT confirmed I was telling the truth, but no Sleep Onset REM because of the Benzo I was coming off. Another 6 months went by until I had my Dx. My Cataplexy was even doubted because of my "questionable" motives- C can really look like faking.

When anxiety emerged from Benzo withdrawal, and I continued with my slow taper off I was told it was a recurrence of "my anxiety disorder" (which I never had) for which a Benzo must have been prescribed in the first place. So withdrawal induced anxiety was made a possible cause of my sleep disturbance.

However, I did not want the medication that I was being accused of seeking. I wanted to be off it- not on it.

It gets to be a very tangled mess when labels get applied. I am very careful about how I document myself and who I share my medical information with. I am a sitting duck in the wrong hands- and I am responsible for preventing that.

I agree with you about the Status Quo- we are simply outnumbered by other folks after the same drugs for all the wrong reasons.

I hope I do not come across and cynical or not trusting- I have had some bad experiences that have left me cautious. If someone benefits from what I experienced, that gives it some meaning for me.



#8 sk8aplexy

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Posted 09 July 2013 - 08:49 PM

This is somewhat quite an unrelated story, but it relates to ER's/judging/neglect.

It is a disturbing, horror story, but unfortunately a true one which I'll never forget and it definitely makes me weary of seeking ER help anymore, at least especially at this hospital, which in the past had been good, and bad. -It's the same place I had a sleep study (MSLT cancelled) which turned into a 9 month hell'ish ordeal-...

 

When I was 29 (near a handful of years back) I took a BAD fall skateboarding down a hill, on my way to skate a ramp, I had a cup of coffee in my hand and hit a rock going pretty fast; it was completely unexpected.  I'd gone down this hill many, many times.  It was just one of those moments, all part of the game. 

I may as well have been riding a bike, in the manner that I fell, rolling/flipping forwards and landing on the upper backside of my left shoulder first while my body scorpioned over itself, I can remember specifically somehow seeing my back as I rolled.  Two friends at the ramp witnessed the fall and immediately ran over, as I was not getting up.  I did roll over and within a couple of minutes they'd helped me up and to a rock to sit on, I told them I needed to go to the ER, as my neck was involved...

 

Arriving at the ER, I had entirely stiffened up, to the point that I could not move and felt stuck where I was, sort of between sitting and standing in the truck. 

The nurse came out to the truck with a wheel chair, first thing I said was 'I fell skateboarding down a hill, could I please have a bed/stretcher, I've hurt my neck and can not move.' 

There were scrapes on my shoulder around to my back, my hands, my knee, and my hip, all road rash and somewhat bleeding.

"No, after you're checked in."  So, after they got me into a wheelchair they strolled me in and told me to wait, there was a family checking in.  I was in so much pain, I couldn't not moan, every movement shot fierce pain throughout my body and especially my upper torso; the kids with the family that were checking in, stared at me, clenching their mothers arm.

Finally, I get checked in (by this point my Mother has arrived since we live close to the hospital and I called her en route) and they take me back to the beds, they tell me "you must move to the bed yourself."  I could not move, I tried to do it and screamed from the pain, I was continuing to moan and was having shooting aches at a 10 on the scale. 

They began to get snotty and finally moved me into the bed, lots of screaming.  Then they tell me "there is no screaming aloud in the ER."

Distinctly, I remember the techs and/or nurses actually dropping, not guiding, the bed between positions; I screamed every time.

 

Shortly after this, I was taken for x-rays, the technicians first words were "you must be the skateboarder."  Lots of screams, it was not easy moving around, they had to roll me on, overs, and back...

The doctor came in, once I was back at the first location in the bed, and says we're going to give a shot of Valium.  Okay.

She comes back after the x-rays and says there's good news.  Then proceeds to ask if I'd been wearing a helmet.  I told her, I was on my way to skate, and that no I'd not been, but at this point that is besides the point (I did not mention the fact that perhaps a helmet would have actually caused my neck and head to have been twisted more -choose to agree to disagree here please-). 

She gave me a lecture about why I need to wear a helmet; I was becoming quite annoyed and frustrated.

Then she asks me directly, "are you here for pills" and I said "I hurt my neck badly, I made need them yes, but that is not why I am here..."

Finally she tells me, "you didn't break anything, there is some muscle damage which will hurt more than a broken bone..."

She quickly shows me the x-ray, writes me a script and tells me I need to leave now.

Once I was in the wheel chair to leave, I asked if I could glance at the x-rays again and possibly ask the doctor another question. 

They said she'd left for the day, then wheeled me into a room to look at the x-ray, when we entered the room the doctor rushed out of the room.

 

Around a month later, my Mother recalls to me that they never gave me one bag of ice, the entire time I was there.

 

The x-ray reports (which I had to be very direct about getting from them, years later, as they told me the visit never occurred, prior to me becoming very direct about it) indicate 'cervical disc degeneration disease (appearing to be 'likely developmental')' with a bunch of other specifics to a few of the vertebraes in my neck.

Since this fall, I've always felt different in my upper torso (not aligned as well). 

For months I told myself over and over, that I'd have preferred to have fallen the same way many times rather than having gone through that awful experience at the ER, as it was more painful than the fall itself.  The 'no ice' was definitely a huge shock to me, because it would have helped and it clearly was the least they could have done...

Being judged and treated in such a manner was awful, this was prior to my Narcolepsy diagnosis, being a skateboarder and a person who has Narcolepsy with Cataplexy can be rough (in the spotlight). 

 

Good luck, again I know that was completely unrelated, my bad just had to vent since I started thinking of it upon reading through this topic posting...



#9 Ferret

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Posted 09 July 2013 - 10:34 PM

Repeat after me..."fifty per cent of all medical personnel graduated in the bottom half of their class".

The good ones are worth their weight in gold.

Women get really tired of being told "it's your imagination" or "it's all in your head". There is a reason why I took my husband with me to the Doctor when I started experiencing full blown cataplexy 27 years ago. Nobody calls my husband a liar. Nobody. I did get sent to a Neurologist pronto and my husband went with me again. That began the nightmare of medication.

I wrangled MY medical chart from the same original Doctor a year later when I wanted to go to see another specialist in another city...it had been duly noted in the chart by the Doctor from that first appointment that he was giving me "the benefit of the doubt" by sending me to the Neurologist. 

Doesn't sound like much has changed although having a cataplectic seizure in front of a Neurologist sure gets ya diagnosed in a hurry...and he wasn't making me laugh either.



#10 sk8aplexy

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Posted 09 July 2013 - 11:16 PM

"Do you have much anxiety?" 

Was immediately asked, by a 'psychologist studied - physicians assistant' of the neurologist (who I never actually saw), after I was describing how Cataplexy was effecting my ability to skateboard any longer, at that time... 

Her response to my asking her, at another appointment, 'so what can you tell me about Hypocretin/Orexin, from what I've read it seems to be related to my sleep/wake state, mood, appetite and more?'

"What is that, I don't think you should be reading online..."

It was not long before I left this 'Neurology Specialists' (sleep specialists too, they explained) business location and went to Mayo Clinic for real discussion, along with answers. 



#11 nursemanda

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Posted 10 July 2013 - 01:39 AM

Wow you guys are so helpful. I'm afraid. I have ten days of medication left and I'm so depressed all I can do is cry and worry. I've called 15 doctors in a 50 mile radius and the earliest is August. Tomorrow I'll try general doctors and psychiatrists...I called the original doctor I had been seeing and they said they would absolutely not prescribe me any more medication. I said that's okay, but I need to know what they recommend me doing. I can't be without my medicine and they said that they will ask around but I don't expect to hear back from them. I can't afford to miss work because of this. just another thing narcolepsy will have ruined. I'm so upset. I want to give up.
Again, thank you all for your help. I read every post and will try again tomorrow. Pray for me please :-)

#12 DeathRabbit

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Posted 10 July 2013 - 08:33 AM

I would start titrating downward just in case you don't get to a doc in time. That way your meds will last longer, and it wont be a cold turkey sorta deal. You might want to inform HR at work if you think crisis is absolutely imminent. Narcolepsy is a recognized disability, so maybe temporary accommodations can be made until you get treatment. I dunno, I've never dealt with the legal side of N.



#13 Hank

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Posted 10 July 2013 - 09:56 AM

The downside of an accommodation request in this case is that it may require a doctors support.

My HR requires that all accommodation requests are initiated by an MD. I am unsure if that applies to other employers.

It is not uncommon for physicians to require "contracts" for pain medications, narcotics and stimulants.

These contracts are used either as a general policy for all patients on these medications or for specific patients with a history of non-compliance. These contracts are used to protect the physician and the practice legally. It allows them the legal means to terminate patients with proper documentation.

The office may have taken a "hard ball" approach, but the contract covers them. No practice wants to dismiss compliant patients without cause. They generally have policies and procedures in place- frequently these are placed after a bad situation occurred which they do not want to experience again.

So, very sorry that you got caught in the crosshairs of a doctors office with such a strict policy. They have their reasons, even if the are on the harsh side. I grew up with a doctor who made house-calls, dirt roads and milk delivery- all of those are hard to find today.

#14 nursemanda

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Posted 10 July 2013 - 11:14 AM

Hank, you're right. I know why they did it, it just sucks.

#15 Hank

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Posted 10 July 2013 - 11:57 AM

Yes it does suck. So sorry for your difficulty. I hope you are able to get through this awkward time.

#16 nursemanda

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Posted 17 July 2013 - 06:01 PM

Well tomorrow is it. I'm out of my medication for narcolepsy tomorrow. I can't get into a specialist until 45 days from now, there are literally no primary care physicians who prescribe stimulants in a 50 mile radius and only one psychiatrist in the area who even called me back about an appointment. I'm out of options aside from going to the emergency room ... and from reading the risks of being labeled a drug seeker ... I'm too scared to go. I'm just sitting here crying at work because I can't miss work for that long. I support my sister, I pay for our house, a dog, a cat... bills for cars, phones etc. I doubt the er will prescribe me enough to get through the month... and the er isn't free! *pity party over here!*



#17 Hank

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Posted 17 July 2013 - 06:18 PM

Consider letting your employer know you are having a medical problem and may require some extra breaks. That way, if you hit any snags you will have addressed it ahead of time.

Stock up on coffee and energy drinks, get to be early and take extra good care of yourself. It will be hard but you will get through it. Be extra careful when driving. You will find ways to cope. We all did before diagnosis and medications. Again, so sorry you are going through this.

#18 DeathRabbit

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Posted 18 July 2013 - 04:56 PM

I would suggest trying to do what you can to improve your sleep architecture with OTC supplements. 5-htp and Valerian root(Valeric acid) can help to some extent. And then for energy, sublingual b12 can sometimes be of help. Others on here had luck with Oral L-Carnitine as well, although all it did for me was make my gym performance better. If you have to, load up on the energy drinks and caffeine like Hank said, but only do that as a last resort.



#19 nursemanda

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Posted 19 July 2013 - 09:22 PM

5-htp? I'm not familiar with that or the Oral L-Carnitine. I'll try to look them up but where would I find them? Market..pharmacy or herb shop?

 

I have 2 weeks of meds now. 45 days till I see a doc and I have 14 days worth of meds. I'm taking 20 mg instead of my usual 40 (otherwise it would last a week)... It's rough. I feel like my performance at work is suffering and my social life is nonexistent. I've totalled a car related to narcolepsy ...