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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

A MyNarcolepsyTeam Member said:

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 about 1 year ago
A MyNarcolepsyTeam Member said:

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 know..get moving..the your blood moves and feeds your brain...
Go to it even waving your arms gets your blood moving


posted 10 months ago
A MyNarcolepsyTeam Member said:

(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 about 1 year ago
A MyNarcolepsyTeam Member said:

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 about 1 year ago
A MyNarcolepsyTeam Member said:

Thank you so much for all of that information. I was wondering how all the different sleep studies work . And u was wondering about the medication also that you mentioned. I was wondering if you've been on medication for sleep issues as long as I have how long it would take to get out of your system so the test results are accurate. I know I have it. Another thing that worries me is that 2 (200) mg of provigil use to work for me for years and it would actually work now if I could take 3 daily. I've wondered for over 2 years now would 3 a day be to much. I have done it and it worked but I didn't do that everyday because I was scared it would be harmful to my body.

My blood pressure is always really good every month when I see my doctor. I'm very happy about that and I want to keep it that way. I believe our bodies do build up a tolerance and the amount we take in the past worked but now it doesn't. That scares me. I wonder if I'm addicted . I wish there was something besides stimulates to help with narcolepsy. I know there are life style changes that help but it doesn't that much. I'm still doing alot of research and I don't understand some of what I've read on how this works.

I read physicians can now replace hypocretin in the brain of patients that have narcolepsy thru intranasal administration of hypocretin peptides. I dont know what that is but would love to find out.

Thank you so much for taking the time to help me. I hope you have a great weekend !

posted about 1 year ago
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