u/Dramatic_Bar7036

My younger sibling was diagnosed with idiopathic hypersomnia.

Before that, he had been diagnosed with mild ADHD, but I am absolutely certain he has CDS (Cognitive Disengagement Syndrome). Every single symptom aligns perfectly with CDS. Idiopathic hypersomnia seems to be just a part of those symptoms, with the root cause remaining unknown.

​He started taking Modafinil, but it doesn't seem to be working. While Modafinil keeps him awake, it fails to address the underlying sluggishness—it feels like a flimsy band-aid. His doctor doesn't recommend stopping Modafinil to start Concerta because his ADHD is only considered mild.

​I also experienced symptoms that perfectly mirrored CDS from my childhood through adolescence. Furthermore, despite having severe ADHD, it took me three whole years just to see any kind of response—whether it was an effect or a side effect—from Concerta, so I have absolutely no faith in that medication. It truly did nothing at all for me.

​He isn't able to fully utilize his natural intelligence. Even though he feels frustrated by his situation, his approach to dealing with it is incredibly passive. It seems as though he is resigned to living with this issue for the rest of his life.

Since standard health checkups didn't reveal anything, we need to run more detailed tests. Because I am very pressed for time, I want to explore alternative possibilities first and get all the screenings done at once.

​The tests we have decided to run right now are iron levels, vitamin B levels, a mineral panel, a BVD (Binocular Vision Dysfunction) test, and a thyroid panel. If the root cause remains unknown even after these tests, we plan to try ADHD medications.

If anyone shares a similar profile—including the hypersomnia—please share your information and insights with me.

1. ​His blood pressure fluctuates between low and the lower end of the normal range.
2. ​He wakes up frequently. However, two separate sleep studies showed no abnormalities while he was asleep.
3. ​Bleeding in his left arm sometimes won't stop, though it is often normal.
4. ​This year, his left nostril bled almost every single daily. He had to have the blood vessels cauterized to treat it.
5. ​His CDS symptoms started in early childhood.
6. ​His blood sugar levels consistently sit at the lower end of the normal range, at all times.

It seems to contrast completely with me except that he has hypersleep... so this profile may not be the cause...

I'll come share the information once I find out the cause :)

​My periods only start when my body is under stress!

​I have highly irregular and infrequent periods (oligomenorrhea). My first period started at a normal age, but it has been this way ever since. 

At the earliest, it comes every 3 months, but usually it’s every 4 to 5 months, and sometimes even once every 6 months. I don’t experience any menstrual cramps at all, nor do I get the hormonal mood or condition swings that others usually complain about. 

I’ve always told people, "For me, it’s almost as if periods don't even exist."

​No OB-GYN I’ve visited has been able to find the root cause. I have had two ultrasounds done:

• ​At a large general hospital: They told me my uterine lining was thick, looking as if I was about to menstruate soon, and prescribed medicine to induce my period.
• ​At a smaller clinic: They said there was no major abnormality and simply offered period-inducing medication as well.

​I found the entire process of getting an ultrasound incredibly embarrassing and felt it was ultimately pointless, so I haven't gone back to an OB-GYN since.

When I first started exercising, my period unexpectedly became much more frequent—almost once a month. I thought to myself, "Ah, I guess I need to work out to get my period." However, things quickly went back to how they were before.

​The strange thing is, if I took a break from exercising and then returned to it, my period would start literally the very next day. The exercise can't be something comfortable or familiar; for instance, running on a treadmill no longer exerts me, so it doesn't trigger any change anymore.

​When my daily life became very monotonous due to studying for exams, it became much easier to notice that my period is triggered by a specific catalyst. That trigger is physical stress.

​By "physical stress," I mean things like:

• ​Suddenly doing high-intensity, strenuous exercise
• ​Going to an unfamiliar place and feeling physically strained
• ​Moving to a new house where my surroundings change drastically
• ​Being completely incapacitated for a while due to a severe migraine

​The flow and duration vary depending on the intensity of the stress:

• ​A sudden, intense workout leads to a light-to-medium flow that lasts a bit longer.
• ​Traveling a long distance back to my hometown (abroad) triggers a very light, faint flow that ends quickly.
• ​A sharp, intense physical shock like a migraine triggers a very heavy flow.

​The longer the gap between periods, the heavier the flow can be, but it’s honestly a gamble every time. 

Alternatively, you could look at the trigger as a physical "shock" or "movement" rather than "stress," because it is strictly my body experiencing the strain; I don't actually feel any negative emotions or mental distress.

​What puzzles me is that while most people say stress delays their period, I can literally start mine the very next day after experiencing physical stress. 

The hospital that examined me is the largest one in our city—how could they not know what this is? Is it even worth getting another ultrasound before looking into other information?

​I also feel like this might be worsening my ADHD. The longer my menstrual cycle stretches out, the worse my ADHD symptoms get. Just a few weeks after my period ends, my ADHD medication completely stops working.

If anyone knows of a case like mine, please let me know! 

Before heading to another large hospital, I’m trying to find out if there are other specific tests I should request besides an ultrasound, but I am completely at a loss.

​My periods only start when my body is under stress!

​I have highly irregular and infrequent periods (oligomenorrhea). My first period started at a normal age, but it has been this way ever since. 

At the earliest, it comes every 3 months, but usually it’s every 4 to 5 months, and sometimes even once every 6 months. I don’t experience any menstrual cramps at all, nor do I get the hormonal mood or condition swings that others usually complain about. 

I’ve always told people, "For me, it’s almost as if periods don't even exist."

​No OB-GYN I’ve visited has been able to find the root cause. I have had two ultrasounds done:

• ​At a large general hospital: They told me my uterine lining was thick, looking as if I was about to menstruate soon, and prescribed medicine to induce my period.
• ​At a smaller clinic: They said there was no major abnormality and simply offered period-inducing medication as well.

​I found the entire process of getting an ultrasound incredibly embarrassing and felt it was ultimately pointless, so I haven't gone back to an OB-GYN since.

​

When I first started exercising, my period unexpectedly became much more frequent—almost once a month. I thought to myself, "Ah, I guess I need to work out to get my period." However, things quickly went back to how they were before.

​The strange thing is, if I took a break from exercising and then returned to it, my period would start literally the very next day. The exercise can't be something comfortable or familiar; for instance, running on a treadmill no longer exerts me, so it doesn't trigger any change anymore.

​When my daily life became very monotonous due to studying for exams, it became much easier to notice that my period is triggered by a specific catalyst. That trigger is physical stress.

​By "physical stress," I mean things like:

• ​Suddenly doing high-intensity, strenuous exercise
• ​Going to an unfamiliar place and feeling physically strained
• ​Moving to a new house where my surroundings change drastically
• ​Being completely incapacitated for a while due to a severe migraine

​The flow and duration vary depending on the intensity of the stress:

• ​A sudden, intense workout leads to a light-to-medium flow that lasts a bit longer.
• ​Traveling a long distance back to my hometown (abroad) triggers a very light, faint flow that ends quickly.
• ​A sharp, intense physical shock like a migraine triggers a very heavy flow.

​The longer the gap between periods, the heavier the flow can be, but it’s honestly a gamble every time. 

Alternatively, you could look at the trigger as a physical "shock" or "movement" rather than "stress," because it is strictly my body experiencing the strain; I don't actually feel any negative emotions or mental distress.

​What puzzles me is that while most people say stress delays their period, I can literally start mine the very next day after experiencing physical stress. 

The hospital that examined me is the largest one in our city—how could they not know what this is? Is it even worth getting another ultrasound before looking into other information?

​I also feel like this might be worsening my ADHD. The longer my menstrual cycle stretches out, the worse my ADHD symptoms get. Just a few weeks after my period ends, my ADHD medication completely stops working.

If anyone knows of a case like mine, please let me know! 

Before heading to another large hospital, I’m trying to find out if there are other specific tests I should request besides an ultrasound, but I am completely at a loss.