Jump to content


Photo

Why Wont They Prescribe Me A Stimulant?


  • Please log in to reply
9 replies to this topic

#1 Chauncey005

Chauncey005

    Member

  • Members
  • 3 posts

Posted 23 July 2013 - 09:12 AM

Hi everyone,

 

I've been dealing with exhaustion for 15 years.  In the past year, I was diagnosed with sleep apnea, restless leg syndrome, and insomnia.  After the CPAP machine didnt work, I was sent to a psychiatrist who believed I had N.  After a couple of months struggling with him about how Nuvigil wasnt working all that great, he made another appt for a sleep study with a "sleep specialist".  Finally, a couple of weeks ago, I have officially been diagnosed with N.  Even though, both doctors are aware that Nuvigil isn't working, neither are prescribing Adderall or any stimulant for that matter.  They both just want to attempt to focus on how to get me to sleep better.  This is a constant blow after depressive blow, affecting my marriage, job, and fatherhood.  Why?  Why is it so hard to get treatment?  Anyone?  I'm at my witts end and completely depressed and have lost all hope!

 

Thanks to all.



#2 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 23 July 2013 - 09:22 AM

Well stimulants weren't that awesome for me personally (just caused mood issues and huge crashes) but it seems strange they wont consider it.



#3 Chauncey005

Chauncey005

    Member

  • Members
  • 3 posts

Posted 23 July 2013 - 09:30 AM

Thanks, DeathRabbit!  I think so as well.



#4 Hank

Hank

    Member

  • Members
  • 1,414 posts
  • Gender:Male

Posted 23 July 2013 - 10:04 AM

What are the qualifications of your "sleep specialist"- I am curious if you are seeing a pulmonologist. I would be interested in knowing if they have treated other patients with Narcolepsy.

If they are trying to get you to sleep better, the explanation seems to be in your diagnosis- you have Narcolepsy. Your sleep is pathologically abnormal and you are incapable to sleeping normally. Narcolepsy cause severe sleep fragmentation and inefficiency.

Stimulant medications are an accepted treatment for Narcolepsy. There is no cure- only ways to manage the symptoms.

I have not responded well to stimulants, but others have. But I did better on stimulants than without.

I was on Xyrem for 7 months. Although I discontinued in January, my EDS is now very manageable. I am currently on Trazadone for sleep which is working very well to give me a restful night sleep.

When you say the CPAP didn't work, I have a few questions. If you have apnea and N, you have two things to treat. If they are treating apnea with the CPAP, they cannot expect that to treat N. N must also be treated. So, it sounds like you are being treated for only 1 of your 2 conditions.

If your doctors are uncomfortable or inexperienced with treating N, I would suggest getting a second opinion. A neurolosist who is fellowship trained in sleep medicine is your best bet. A pulmonologist may also be board certified in sleep medicine, but their experience will be with sleep apnea. Because N is rare, very few physicians will have experience in treating it.

I have been on physicians learning curve before. More than once I have heard- "I've never seen anything like this" or "I am learning from you" or "you are the expert". It has taken me time to find a medical team that actually know how to treat me- they are the experts, they have seen this before and I am learning from them. What a difference finding the right doctors makes.

I hope you get some relief soon. This illness impacts more than sleep- it impacts our lives as a result. The quality of life and the impact on your life needs to be taken seriously.

#5 Megssosleepy

Megssosleepy

    Member

  • Members
  • 433 posts
  • Gender:Female
  • Location:DreamLand USA

Posted 23 July 2013 - 10:11 AM

I find this very interesting.  My Sleep Doc originally didn't want me on anything for sleep but was willing to try a number of different daytime meds until we found one I could tolerate.

 

What are they doing to help you sleep better?

 

When I was first DXed I found being on a stimulant helped me sleep better at night due to the fact that I was awake during the day.

 

They may be staying away from the stimmies if you have other underlying medical conditions.

 

I hope you can find some relief though, I know it is very frustrating!!



#6 Chauncey005

Chauncey005

    Member

  • Members
  • 3 posts

Posted 23 July 2013 - 11:14 AM

Thanks for responding!

 

Hank, he is the director of the sleep study department and is a Pulmonologist/Sleep Medicine Specialist.  The other doctor is a psychiatrist, who I was sent to for initial N diagnosis (for some reason).  The psychiatrist has made it apparent that he wants to attempt to focus on me sleeping better and not stimulants, which is the route he has taken.  The Pulmonolgist is requesting CPAP logs to see how many times I stop breathing.  I assume to help explain that although Nuvigil helps with focus, my body remains exhausted.  So, I can only assume that he believes sleep apnea is playing a part in the body exhaustion.  The CPAP definitely has not helped with EDS, which is why I say it is not working.  And, I definitely agree with you that I am not being treated for N, only sleep apnea.  So, I continue to get prescribed sleeping medications w/ Nuvigil and continue with different sleep drugs. 

 

Megssosleepy, as far as helping me sleep better, it is just trying different drugs... that really is it.  I have no underlying medical conditions that I know of, just EDS. 

 

Thank you very much to the both of you.  I really appreciate the concern and have found some relief in this forum!  Thanks again!



#7 Hank

Hank

    Member

  • Members
  • 1,414 posts
  • Gender:Male

Posted 23 July 2013 - 11:56 AM

It makes complete sense to manage your apnea- that only makes everything worse. Maybe he is concerned that you are not compliant with the CPAP or would become non-compliant with the CPAP. Maybe they are trying to get a true baseline of the impact of your Apnea.

However, the fact that your sleep doc is a pulmonologist makes sense why the apnea is the main focus. My first PSG was done by an ENT (ear nose throat surgeon) who board certified in sleep medicine and the medical director of the sleep lab. He completely missed my DX. So, I am not impressed with any doctor who is not a Neurologist who is Fellowship Trained in Sleep Medicine. It is the difference between lungs and brains- we need someone who knows brains. That is just my opinion, however. I do not want to undermine your trust in your doctors. However, there is no harm in a second opinion.

#8 doinmdirndest

doinmdirndest

    Member

  • Members
  • 334 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 23 July 2013 - 03:15 PM

if stimulants are the rifgt option for you be advised you will likely run into trouble with doctors hesitant to raise the dose after an initial small dose doesn't work well enough, or lose it's effectiveness over time.  if you have high bp now you probably need it corrected first

 

brace up for the long haul, changing doctors is now or may eventually become a wise choice.

 

might be now if your doctor prescribes stimulants to no one.  some don't, it's their call.



#9 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 23 July 2013 - 04:01 PM

I've never heard a of sleep doctor flat out refusing stimulants. Perhaps they have flagged you as a "drug seeker." That bull*BEEP* happens all the time unfortunately.



#10 drago

drago

    Member

  • Members
  • 227 posts

Posted 28 July 2013 - 11:30 PM

Hi everyone,

 

I've been dealing with exhaustion for 15 years.  In the past year, I was diagnosed with sleep apnea, restless leg syndrome, and insomnia.  After the CPAP machine didnt work, I was sent to a psychiatrist who believed I had N.  After a couple of months struggling with him about how Nuvigil wasnt working all that great, he made another appt for a sleep study with a "sleep specialist".  Finally, a couple of weeks ago, I have officially been diagnosed with N.  Even though, both doctors are aware that Nuvigil isn't working, neither are prescribing Adderall or any stimulant for that matter.  They both just want to attempt to focus on how to get me to sleep better.  This is a constant blow after depressive blow, affecting my marriage, job, and fatherhood.  Why?  Why is it so hard to get treatment?  Anyone?  I'm at my witts end and completely depressed and have lost all hope!

 

Thanks to all.

 

Nuvigil wasn't out when I was originally dx'd, but I was originally put on Provigil.

 

This was a stupid move on the doctor's part, because I am also on hormone therapy for an unrelated hormone imbalance. Provigil interacts negatively with this medication, but my doctor told me 'it's the preferred method of treatment.' Except for my case, where it was a STUPID choice. Not only did Provigil not help me, but it set my hormone therapy off for MONTHS.

 

Why did the doctor change my prescription from provigil to adderal? Was it the fact that it interfered with my other prescription? Nope, she couldn't care less. Was it the fact that I told it made me feel fuzzy, slow, and zombie-like all day? NOPE! The reason she changed my prescription was that I told her I took Provigil at my first alarm around 8 am and slept till noon. Completely true, by the way. All the other stuff didn't matter, neither did the fact that I had disorientation from Provigil after being on it for a month, the only reason she was willing to switch my prescription was that I could SLEEP while on provigil.

 

If that sounds ridiculous, that's because it is. I am now on adderal and completely functional. Had I known that provigil caused issues with my hormone thereapy, I would have refused it as a treatment option (given how much trouble it put me through.)

 

Have you specifically asked to be switched off nuvigil to adderal or ritalin? Sleeping well through the night might help your daytime symptoms, but that's not the case for everyone. For instance, I usually sleep well at night. A+ in sleeping at night. But I still had EDS/sleep attacks. Narcolepsy sucks that way. That means treating me by 'making me sleep well at night' would be a waste of time... I needed stimulants.

 

Sometimes asking about it is all that needs to be done.

drago