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What Sleep Study Is The Best To Diagnose Narcolepsy

What Sleep Study Is The Best To Diagnose Narcolepsy

I was wondering if anyone can help me with a few questions I have. I had a sleep study done several years ago and my doctor at that time said I had narcolepsy. I can't remember which sleep study that was. I have been taking provigil for several years and it worked great for a long time. Now that it doesn't my primary care physician wants me to have another sleep study done because he doesn't know that much about narcolepsy so he ordered the sleep study for sleep apnea. Since he won't take the… read more

posted June 4, 2021
A MyNarcolepsyTeam Member

(Just beginning with this: I am not a medical doctor so this is just from my own knowledge.

Clonazepam is a benzodiazepine which can worsen narcolepsy symptoms. You might be able to talk to your doctor about a different anti anxiety medication if possible for you. They may want to change that due to the results of the test anyway since those make you tired.

My overnight sleep test was inconclusive but since my symptoms were so severe, they requested me back to do a other overnight and MSLT. I'm so sorry you have to deal with all of that, I have panic disorder but to a lesser extent and I understand how bad the shaking can be... The best advice I can offer is make sure the doctors you're working with are listening to you, and if they're not then don't waste your time. It's difficult to take charge of that stuff since they're (supposed to be) the more knowledgeable ones but they need to be good people that you can talk to.
Best of luck to you. I hope things get easier. Feel free to let me know if you have any other questions!

posted June 24, 2021
A MyNarcolepsyTeam Member

The amount of time (as long as it’s over like a few weeks or a month) shouldn’t affect how long it would take it for it to get out of your system as far as I know but those conducting the sleep test should tell you when you have to stop the medication and start the sleep journal which they should give you. I would recommend bringing any questions you have and not being afraid to ask them. Provigil is one of the safest stimulants so far but I do not believe doctors will increase a dose to over 400mg a day from what I have been told in the past. They may suggest an additional stimulant though depending on the test results. I do not think provigil has been tested much over the 400mg.
I understand the fear of addiction, but also becoming tolerant of a medication does not necessarily mean addiction. Also, it’s a medication that we need to feel any semblance of normalcy, giving that up in any way would be near impossible for anyone.
The therapy you mentioned with hypocretin is only available in clinical trials I believe so it is not yet available to the public. It is incredibly promising though. Intranasal administration means they give it to you by shooting it up your nose. The reason for this being that it is the most effective and least invasive way of administering the drug. The reason it is most effective is that it must get to your brain which can be difficult. The hypocretin peptides could either be hypocretin/orexin itself or the building blocks for it. People are currently trying to find ways to decrease side effects and increase efficacy of this method.
I don’t know too much of course but I hope this is helpful nonetheless.

posted June 5, 2021
A MyNarcolepsyTeam Member

The best test is a Polysonograph that monitors your sleep at night and a Multiple Sleep Latency Test during the day. The Poly test will check for sleep Apnea, and Restless leg Syndrome. The MSLT is done during the day for a whole day. It consist of different scheduled naps and times of being awake. It starts like at 8am. You stay in the room that you slept in the night before and they will come in and instruct you. They will tell you when you can take naps and when you have to stay awake. They will bring you breakfast, lunch and you will end up leaving around 5-6pm. They will call you when results are done. Then you will see a sleep doctor or Neurologist. Dont wait on your PCP to research for your condition. He should of referred you to a Neurologist/ Somnologist. Thats who should manage your meds and NArcolepsy. They specialize in this condition.

posted July 2 (edited)
A MyNarcolepsyTeam Member

From my long years of dealing with this-narc..
I tell every one to check your nutrients...Big thing find exersice you like..check out Dr
Amen and Spect scans..which show where the blood flows which means that part of your brain is working...Brain exercises..you know..get moving..the your blood moves and feeds your brain...
Go to it even waving your arms gets your blood moving

n

posted September 8, 2021
A MyNarcolepsyTeam Member

My pleasure always, I like being able to answer questions. I haven't heard of doctors going over 400 but there could be some out there.
And I understand completely.. for so long I didn't understand why it was so hard for me, but then after my diagnosis I realized that it was just too much energy. Having support is one of the most important things I've found. Even though he doesn't understand, I've found someone that still does everything he can to help me stay awake and as energized as possible. Sometimes you have to just be proud of what you have done today, even if others think you shouldn't be.

posted June 5, 2021

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