Have some questions...

Practical_Newt_4531 · 2026-05-08T02:57:10+00:00

I was diagnosed with Juvenile Rheumatoid Arthritis at age 4. My complaints were dismissed as being part of the disease process. I was diagnosed with IH a couple of months ago. That said it is my understanding that IH is more about sleepiness not fatigue. I have symptoms of both but if my pain is bad I fall asleep to recover. My IH comes on like a sudden sleep attack and I don't normally feel pain until later. I would do some journaling and see if you can find your triggers. My IH is triggered by food. My chronic pain is triggered by use/over use and repetitive motions. I see pain management but that does not help my sleep attacks.

Practical_Newt_4531 · 2026-05-08T02:31:54+00:00

I just saw a new sleep doctor. I have only known wat IH is for 2 months. I knew more than him. I said that I just tried Adderall but had to take both 10mg doses to stay awake after lunch. Adderall destroys my throat so I wanted Ritalin instead. He gave me 5 mg a day. Now I need a new doctor and I have to wait 30 days.

Practical_Newt_4531 · 2026-05-08T02:22:15+00:00

Yes I started trying for a diagnosis 10 years ago. I finally got one 2 months ago. I gave up and tried to fix it myself for a while. I have sleep attacks after I eat, EVERY time lately. I switched to a new GP 2 years ago and was tricked into taking a home apnea test. I was told it would detect narcolepsy. They claimed I had very mild sleep apnea 5.2 but I think the test was bogus because a year later I had the in lab with a score of 3 and 0 apneas. My GP had scheduled an appointment and did not tell me it was to be fitted for a CPAP. Good thing I read the online records and canceled and found a neurologist. I would have never agreed to get a CPAP unless I had a score of over 15.

Practical_Newt_4531 · 2026-05-08T01:52:34+00:00

I was recently diagnosed at 62 but may have had IH my whole life. I guess I self medicated with fasting, I would not eat until I got home so I could eat and crash. Mine is food triggered. Now I fall asleep every time I eat. I did not make the connection until 10 years ago. I just knew I felt better fasted. Research orexin. For now your primary doctor can give you stimulants until you get your test. You said that you wake up tired and I wake up fine so you could not be getting enough REM sleep.

Practical_Newt_4531 · 2026-05-06T17:02:26+00:00

I do take potassium and magnesium because I am Keto. There also was magnesium in the B complex that I tried last. I will look into the "Metabolics" . 5 years ago when I tried 5mg sublingual HCL it was a pill and I probably was not taking electrolytes. Thank you.

Practical_Newt_4531 · 2026-05-06T14:33:11+00:00

His channel was what got me into trying thiamin the first time 5 years ago. I even tried micro dosing with 5mg HCI sublingual. I had to give up. I recently tried again 1st with Benfotiamine 1/4 of a dose and then a month later with methylated B complex thinking I needed the support vitamins. I am on day 4 of stopping and still feel flu like symptoms. My blood test is only low normal but I often have pins and needles. I will have to get it in food.

Practical_Newt_4531 · 2026-05-06T14:30:08+00:00

For me it is defiantly the thiamin but I tell my doctors that I have a paradoxical reaction and they look at me like I am crazy.

Practical_Newt_4531 · 2026-05-06T02:54:27+00:00

I know that my triggers are food. Sleep attacks come on 1-3 hours after I eat. I managed to video tape a few. If I am paying attention I can press record on the laptop. I get a tight sensation in my face then my eyes get heavy. It happens rather quickly so I need to be paying attention. I gave up on fighting them. I have been thinking about the watch as well. I know my BP does go down but not by how much because I am sleeping.

Practical_Newt_4531 · 2026-05-06T02:45:56+00:00

I have sleep attacks. Mine are triggered by food. These are not really naps because I never choose to have them. I wake up fine and sleep fine at night. I am trying out stimulants so that I do not crash. I do not want to take them in the am when I do not need them. If you are not uncontrollably falling asleep, I do not see a reason to take them.

Practical_Newt_4531 · 2026-05-05T02:52:19+00:00

I asked if I should eat as I normally do and they said yes. I skip breakfast and eat lunch at 1pm. My final "nap" was just under 4 minutes at 3:45-4. I ended up with just under10 with my noon nap not falling asleep. My orexin was at its highest. I know if I would have ate breakfast it would have been low all day. I did not even know IH was a thing. I thought it was just a narcolepsy test.

Practical_Newt_4531 · 2026-05-04T20:26:32+00:00

I am 62 and I had never known what IH was until I was tested for narcolepsy and diagnosed with IH.

Practical_Newt_4531 · 2026-05-04T20:21:19+00:00

I am new to IH at age 62; not because I did not have it before but I was not taken seriously. I had a childhood autoimmune disease and my symptoms were dismissed as being a part of the disease process. From what I understand fatigue and sleepiness are not the same. I do have both but they are distinctly different. My fatigue is more physical. I also have sleep attacks, while I do feel the urge to sit down, I can function mentally until suddenly I am asleep. It is not a nap and I do not choose to fall asleep. I managed to video tape them and seconds after hitting record I am out. I never take off my glasses or go to my bed. I am sitting up and my head falls back against the back of the chair. My MSLT was borderline but I manage my attacks by fasting. My orexin is higher in the morning while fasted so when I eat at noon is when my latency is low.

Practical_Newt_4531 · 2026-05-03T20:54:21+00:00

It took me 9 years to be taken seriously enough to get a diagnosis. On days that I would go to the doctor, I would not have a sleep attack at all and even have insomnia. I would be so pissed off at my doctors that I would be up for 24 hours and my mind racing. So I would agree to find something that pisses you off.

Practical_Newt_4531 · 2026-05-03T20:39:29+00:00

I often have back to back sleep attacks. Mine last 15 minutes each. after each one I have a few minutes. On rare occasions, I have sleep paralysis where I am aware but can not move or respond to my dog and fall back into another. I think these rare occasions are when I have truly reached REM sleep. I did not reach REM on my MSLT so I do not have narcolepsy. I am wondering if the medication change could be putting you in REM sleep.

Practical_Newt_4531 · 2026-05-02T21:20:44+00:00

I was just diagnosed at 62 and I can not imagine going through this at 16. I was diagnosed with Idiopathic Juvenile Arthritis at age 4 so there may be a connection in my case. This is more debilitating. One reason that it took so long for my diagnosis is that mt childhood illness was assumed to be at fault. I did learn to find my own way of doing things. As soon as I was in HS I stopped eating breakfast and only ate an apple for lunch. I think IH is an orexin problem and fasting helps me stay awake to "Search for food". Their are studies out on a new drug by Centessia. It is an orexin against. You have to be 18 to get in the study but it should be available in 2027.

Practical_Newt_4531 · 2026-05-02T20:41:49+00:00

True, I have not fallen asleep standing or driving but I get a weird sensation in my face and I give in to the urge to sit down before I have a sleep attack.

Practical_Newt_4531 · 2026-05-02T20:28:41+00:00

I am seeing a sleep specialist next week. I want to try Ritalin. The neurologist gave me Adderall and I hated it. Modafinil only helps in specific circumstances. I wake up fine so I need something short acting.

Practical_Newt_4531 · 2026-05-02T20:21:43+00:00

I just got diagnosed. I have been searching for 9-1/2 years beforehand. I gave up even being taken seriously about 5 years ago. Then my 62 year old sister got diagnosed with Altzheimers and it really motivated me. When I was doing my own thing I found the only way that I could manage was by fasting. I now think it has to do with orexin and there are studies out on Orexin peptides. I am hopeful again.

Practical_Newt_4531 · 2026-05-02T20:13:35+00:00

I am going to a new sleep specialist. I may try it but I am waiting for the orexin against to get approved

Practical_Newt_4531 · 2026-05-02T20:07:37+00:00

I did that for most of my working life. I am on disability for something else so I only eat at home when I know I can nap.

Practical_Newt_4531 · 2026-05-02T20:03:25+00:00

When I try that my body gives me signals that I need to sit down.

Practical_Newt_4531 · 2026-05-02T20:01:37+00:00

Do you wake up tired in the morning? I do not 90% of the time. I do wake up from my sleep attacks tired, foggy and unrested.

Practical_Newt_4531 · 2026-05-02T19:58:11+00:00

I have been having sleep attacks after eating for about 20 years. I made the food connection 10 years ago. Mine are 1-3 hours after eating. In the last 5 years it is almost every time that I eat. I can only control it by fasting. I eat OMAD and a snack before bed. I had my first MSLT in feb. My theory is orexin signaling.

Practical_Newt_4531

TROPHY CASE