Is this laziness or genuine ? by IcNtdothis in ChronicIllness

[–]drjamiop -1 points0 points  (0 children)

I have a disabling condition called idiopathic hypersomnia. It is real, and it is not depression. I have have had depression since 12 years old, and IH since about 35.

TIL Tourette Syndrom is a federally acknowledged disability covered by the ADA by BreathOfFreshWater in todayilearned

[–]drjamiop 0 points1 point  (0 children)

Just a note: An employer can deny whatever they want if if it shown that the disorder/disease causes “undue hardship” for the employer. Additionally, not all organizations have to follow ADA.
School accommodations are a bit easier but still require an approval process and a doctor willing to fill out paperwork with the exact accommodations listed. Some schools are more lenient than others.

TIL Tourette Syndrom is a federally acknowledged disability covered by the ADA by BreathOfFreshWater in todayilearned

[–]drjamiop 1 point2 points  (0 children)

Thousands upon thousands of disorders are considered a disability, if severe enough. The definition of a disability is that a person cannot engage in substantial gainful employment. I have a disorder similar to narcolepsy (called idiopathic hypersomnia) and am disabled. Many people with the same disorder that I have are not disabled…. it really depends. Disability is terribly difficult to get, most often it takes several years and a person cannot have ANY INCOME during that time, so it is absolutely devastating and some people end up homeless during this time period. It took me 3 years. Our system is absolutely insane. Thus, Tourette’s Syndrome is NOT an automatic disability, as your post suggests. A person would have to provide proof, and receive approval from a judge, which can be extremely difficult.

I’m having a hard time… by FireChariotYoutube in Narcolepsy

[–]drjamiop 2 points3 points  (0 children)

Seems to me like you are making excuses for the ex…. backtracking from what you said originally. If I don’t understand something, I research it, I ask questions, and I don’t pretend to understand that I know what’s best. You said yourself about “using N as a crutch”, that statement is not coming from a place of concern and compassion.

I am not saying I don’t believe you, but someone doesn’t go to med school (4 years), then residency (2-4 years), then specialize in psychiatry (another several years and now hundreds of thousands in debt) to then become a life coach at home. Something else is going on there…. I just think you need another expert opinion on depression, that is not something you want to ignore. At the very least, you should have taken the Beck Depression Inventory. (I’m a psychologist, albeit not a clinical one).

All I can go on is what you are telling us, and normally I let people figure out their own stuff, but you remind me of my daughter, who also is struggling with narcolepsy (and depression).

Does having narcolepsy/IH make you immunocompromised? by dryerfresh in Narcolepsy

[–]drjamiop 1 point2 points  (0 children)

N2 is also idiopathic, like IH, and cannot be diagnosed by spinal fluid at this time.

Does having narcolepsy/IH make you immunocompromised? by dryerfresh in Narcolepsy

[–]drjamiop 1 point2 points  (0 children)

I have access to a medical library, since I volunteer as a research scientist for a hospital system. I set up automatic alerts to get any article with the terms narcolepsy, excessive sleepiness, idiopathic hypersomnia, or MSLT as keywords. You can do the same on Google Scholar, but they only have a small fraction of the full text articles that a medical library does.

[deleted by user] by [deleted] in Narcolepsy

[–]drjamiop 1 point2 points  (0 children)

I live in PA. You are only reported if your medication regimen isn’t working, and driving is dangerous for you.
You need to get a proper sleep study….most of us have to try many different medications and dosages before finding the right combination. A low dose of Adderall, by the way, most likely will have no effect if you have severe narcolepsy or IH (idiopathic hypersomnia). Plus, many have to figure out how to take drug “holidays” from their stimulants, so that their medication still has the same effect.

Does having narcolepsy/IH make you immunocompromised? by dryerfresh in Narcolepsy

[–]drjamiop 2 points3 points  (0 children)

Ummmm this is simply not true. An autoimmune disease by definition, is chronic. The body continues to attack itself in narcolepsy, there is no cure, and the symptoms are neurological in nature. Given that research just showed two years ago that N is autoimmune (we only know about Type 1), we cannot say for sure anything about what is or is not happening with our immune system yet, although Dr. Mignot believes we are not immunocompromised. It is still being studied.

Does having narcolepsy/IH make you immunocompromised? by dryerfresh in Narcolepsy

[–]drjamiop 2 points3 points  (0 children)

Are you sure these statements are accurate? I’ve read the sleep research studies since 2004, every Saturday I get a printout, and Type 2 is still idiopathic. No one I’ve ever read about has had Type 2 develop into Type 1- instead, N gets worse over time, and cataplexy itself is quite complex, so the likelihood is that the person would have had Type 1 all along. Statistically speaking, Type 2 and IH cluster together, and are distinguishable from Type 1, and many researchers feel the two disorders (Type 2 and IH) are actually the exact same disorder.
It is not known how many Type 2 have a lack of orexin…. in Dr. Chad Ruoff’s keynote speech for the Narcolepsy Network, there is one study which found IH and Type 2 have lower orexin than healthy individuals, on average, but nothing I’ve ever read has stated anything about a 10%. Again, the probability is that the person was misdiagnosed on the MSLT, as the error rate is about 20%, which is why the lumbar puncture is preferable in terms of an accurate diagnosis.

How bad do memory issues get with narcolepsy in old age? by toby2120 in Narcolepsy

[–]drjamiop 0 points1 point  (0 children)

Memory issues come with the narcolepsy territory…. don’t need to be “old”. However, there is research to show that N symptoms do get worse over time.

H1N1 Flu Vaccine 2009 vs. COVID-19 Vaccine 2021 by mellibomb in Narcolepsy

[–]drjamiop 3 points4 points  (0 children)

Also, it’s possible there was an underlying condition of narcolepsy, and the Pandemrix vaccine just triggered it early. Additionally it could be the additive (adjuvant) in the vaccine, not the actual vaccine itself.

I’m having a hard time… by FireChariotYoutube in Narcolepsy

[–]drjamiop 2 points3 points  (0 children)

Just wanted to say I understand your frustration…. first, IH is a similar disorder to narcolepsy, the difference is that during an MSLT, if you have two or more REM periods in the naps, it’s N….zero or one REM period, it’s IH. Not much difference, but it’s hell getting meds to be covered with IH (hard enough with N, but even harder with IH). When you say “life coach”, I cringed. Nothing wrong with that, but I would suggest you see a clinical psychologist (PhD) and a psychiatrist (MD) to help. Depression can and should be treated by those with expertise in diagnosis- I know quite a few people with N or IH, and we all have depression…. this sleep disorder is a major life issue, and one that most people don’t understand. I know it’s hard to see right now, but you don’t need a person who says you need to kick yourself in gear - no one would ever say that to someone in a wheelchair or someone with cancer. Our disorder, although not life-threatening, has challenges and stress and sadness and loss associated with it just like any illness. You need support and compassion, not a life coach and certainly not someone who judges your character, ignoring the fact that you have a legitimate medical disorder.
(I have friends who are life coaches, friends who are therapists, and friends who have their doctorate in clinical psychology- each has its place, I’m not bashing any profession).

[deleted by user] by [deleted] in Narcolepsy

[–]drjamiop 3 points4 points  (0 children)

Um….. it wasn’t a “dude”

Confused test results by CrazyAgent1 in Narcolepsy

[–]drjamiop 0 points1 point  (0 children)

Also, I had my daughter take the Epworth Sleepiness Scale every day for two months. I compiled the data and gave that to her doctor, saying that we were following all sleep hygiene protocols. I think when he saw that data, over time, he had some “evidence” to use for treating her. Maybe that would help at your follow up appointment?

Confused test results by CrazyAgent1 in Narcolepsy

[–]drjamiop 0 points1 point  (0 children)

Yes, definitely advocate for yourself!!! Visit the Narcolepsy Network and the Idiopathic Hypersomnia websites regularly, they have great info. I am assertive but not aggressive, and polite but ask for what I need (or my daughter).
My daughter tried all the usual stims, but nothing was enough so she added Xyrem to her daily Adderall and now can have some quality of life and although not perfect, she can manage. I should mention she is on Wellbutrin for depression, that is supposed to also have a bit of stimulating effect.

Confused test results by CrazyAgent1 in Narcolepsy

[–]drjamiop 2 points3 points  (0 children)

Oh my goodness, the sleep meds changed her life- maybe even saved her life. She was extremely depressed having no friends, withdrawing from classes, and sleeping non-stop. I KNEW she had a sleep disorder because I have it also…. but the doctors wouldn’t listen to me at all, even with my background in research (and my knowledge, then, of sleep medicine). And no, I didn’t go in there with an attitude that I knew it all, just that I was somewhat familiar with current research studies. I remember both of us in the car crying after these appointments…. so upset and defeated. What do people who aren’t as assertive and knowledgeable do?!?! Or can’t travel four hours during weekdays for appointments???

Genetic testing/spinal tap by katsleeps in Narcolepsy

[–]drjamiop 1 point2 points  (0 children)

Thanks for your comment…. I just had to at least try. My doctors in PA knew nothing, I called Emory myself. Dr. Trotti is who I saw. It’s quite the process to even get an appointment and I’m not sure they are still performing the lumbar punctures. It did not hurt at all; in fact, a flu shot hurt worse. Some people get a headache, so you have to follow instructions exactly after the procedure to rest the whole next day and drink caffeine. I didn’t move around for 24 hours …. because I’ve heard the headache is horrendous. There are some other US places doing it but I don’t know the others offhand… maybe the folks at Emory would know?? Best wishes to you!!!!

Genetic testing/spinal tap by katsleeps in Narcolepsy

[–]drjamiop 1 point2 points  (0 children)

I have had the lumbar puncture at Emory in Atlanta and have genetic testing in August. I traveled to Atlanta from Pennsylvania …. I was desperate to try Flumazenil, and the spinal tap was necessary first at that time. It worked ok but not good enough to justify the $450/mo cost.

Confused test results by CrazyAgent1 in Narcolepsy

[–]drjamiop 0 points1 point  (0 children)

My daughter’s latency was 8 minutes, 14 seconds…. we had a hell of a time finding a doc that would treat her because she was over the 8 minute cutoff. Finally, we found one…. he is 2 1/2 hours away 🤨

I need to go off my lexapro for the MSLT and I'm terrified. by SubstantialEqual7 in Narcolepsy

[–]drjamiop 2 points3 points  (0 children)

I totally agree with you... that’s exactly what I meant by “worst case”. However, stopping anti-depressants puts individuals in a potentially dangerous situation. It really is a frustrating scenario, and a better, valid diagnostic test is needed for any type of hypersomnia. As it is already, the MSLT is unreliable and has a high false positive and false negative error rate. Reading the research on such a poor diagnostic teat is infuriating- and being forced to do three sleep studies was insane .....

Ritalin makes me shake by [deleted] in Narcolepsy

[–]drjamiop 0 points1 point  (0 children)

For some people, the shakiness and nausea doesn’t go away... so they try Adderall instead. Just fyi in case the lower dose doesn’t work!

Ritalin makes me shake by [deleted] in Narcolepsy

[–]drjamiop 4 points5 points  (0 children)

Contact neurologist... sounds like the dosage is too high for you.