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Narcolepsy

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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Teenager With Narcolepsy

Teenager With Narcolepsy

I have a teenager with narcolepsy who is really struggling. He has had averse reactions to medications and has a hopeless attitude. I can see how much he is struggling and suffering. When I try to help him and make suggestions, he gets angry with me and frustrated. He has a lot of supports in place but he is in the worst place right now. How do I support him and support myself at the same time? It is so hard to be a mother and feel this helpless.

A MyNarcolepsyTeam Member said:

It sounds like he is suffering from depression also. That needs to addressed so he can feel better. Depression makes you tired during the day also complicating narcolepsy.

posted 3 months ago

Narcolepsy And Disability

Narcolepsy And Disability

I have narcolepsy. Which explains so very much now. Alot of things make sense. I won't get into my whole sappy life, so here goes my question
I have multiple diagnoses
2 open heart surgeries for mitral valve replacement. Uncontrolled diabetes Ii, HBP, cholesterol, CHF, Rheumatic Heart Disease, Fibormylgia, back pain, Gastrointestinal issues, marjor depression, anxiety, PTSD....and newly diagnosed Narcolepsy. What are my chances for getting approved for disability??? I'm worn out… read more

A MyNarcolepsyTeam Member said:

Get eating healthy..Kick the junk to the side..All your conditions can improve...Dr Amen on line His wife has nutrition info for the brain
Good luck and find substituted for junk and do it because… read more

posted 5 months ago

Does Anyone Have To Stop At A Parking Lot To Nap For About 20 Min If They Have A Long Drive Even After Taking Modafinil 200mg?

Does Anyone Have To Stop At A Parking Lot To Nap For About 20 Min If They Have A Long Drive Even After Taking Modafinil 200mg?

A MyNarcolepsyTeam Member said:

Definately cant drive for more that an hour straight..modafinil 200mg plus a Monster energy drink and loud music..still the road noise can lull me to sleep...I actually have been in an awake but not… read more

posted 4 months ago

Has Anyone Turned To Illigal Drugs To Try To Stay Awake

Has Anyone Turned To Illigal Drugs To Try To Stay Awake

A MyNarcolepsyTeam Member said:

Yes I’m in recovery I just had a year of sobriety. I was addicted to amphetamines for 10 years then switched to crystal meth. It only made my narcolepsy worse to deal with after I came off of them… read more

posted 3 days ago

Having Trouble Remembering Which Meds You Have Taken?

Having Trouble Remembering Which Meds You Have Taken?

A doctor advised me decades ago to keep a record of my meds (amt, dosage, time) and past medical history. To this I added all my past meds that I was prescribed for narcolepsy but didn't work. The meds we get for our narcolepsy often have wicked side effects and we don't want to buy the same real estate twice. Every time you switch doctors (keep a record of the doctors' names you have seen also ) you have a record of what's already been tried. I can't stress this enough that this is VITAL and… read more

A MyNarcolepsyTeam Member said:

Very good.my problem was keeping tract of my notes

posted 5 months ago

Feelings About Having Narcolepsy

Feelings About Having Narcolepsy

Does anyone feel embarrassed by having narcolepsy? It use to bother me really bad. I accepted it a few years ago & was able to finally talk about it…now that people see that I’m more active than I use to be & try to depend on me to do things on time is starting to really bother me again

A MyNarcolepsyTeam Member said:

Yes,Jeanne..I feel the same !!

posted 4 months ago

Treatment For Narcolepsy Without Diagnosis

Treatment For Narcolepsy Without Diagnosis

Has anyone ever in the past been told by a doctor they think you have narcolepsy and put you on meds for narcolepsy. This happened to me years ago. Just wondering if anyone has ever been diagnosed with narcolepsy with a physicitrist when you told them all of your chronic health issues . Mine ask alot of questions about all my disorders and concluded that I did have narcolepsy in his judgment because as a child the mental issues I had up until adulthood was linked to narcolepsy. Physicitrist if… read more

A MyNarcolepsyTeam Member said:

Big..Get the diet straight..Some foods bring on attacks..If that is the case check with an allergist.

posted 5 months ago

Diagnose Of Narcolepsy

Diagnose Of Narcolepsy

Hi everyone, I haven't had time to check into seeing about my sleep study that my doctor wanted me to do after I told him my medication after 16 years doesn't do as well. He is a family practitioner and doesn't know that much about narcolepsy and told me to go get another sleep study done. The more I research about sleep studies the more scared I become. I've seen where some are not accurate. And another thing I dont think I can go without my anxiety medication and we have to stop all… read more

A MyNarcolepsyTeam Member said:

They didn't tell me to stop my meds.

posted 7 months ago
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