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colomom wrote: ↑

Mon Jan 02, 2023 1:19 pm

I totally agree about the multi-disciplinary approach, however. On my blood tests, the rheumatoid markers were clean/negative. Interestingly enough my Pectus Excavatum can sometimes be related to Connective Tissue disorders, some of which have Hypersomnia included. But the Neuro didn't feel the rest of my symptoms or presentation matched.

Not sure that neurology is the right area of specialization to either rule in or out a connective tissue disorder. My son and I have Ehlers Danlos Syndrome, speaking from experience most doctors know little or nothing about connective tissue disorders. Have you looked into any of the connective tissue disorders associated with Pectus Excavatum to see if you think the common features are a fit? Many connective tissue disorders can be ruled either in or out with genetic testing. Have you ever had a connective tissue genetic panel done? They can be hard to get in with, but might be worth seeing a geneticist if it’s something you suspect.

I also noticed that the neurologist listed suspicion of REM Behavior Disorder. Why is RBD suspected? Do you commonly physically act out your dreams? Did your sleep studies ever show a finding of REM sleep without atonia?
My son has REM Behavior disorder, it’s pretty hard to feel well rested after a night of physically acting out vivid nightmares. His REM Behavior Disorder is treated with Clonazepam, it’s made a world of difference for him. I don’t know if you have RBD or not, but might be worth discussing in more depth with your docs.

Miss Emerita wrote: ↑

Mon Jan 02, 2023 11:44 am

Many thanks for the links; I learned a lot. And one thing I can see is how little we know about hypersomnia. This makes your efforts to get effective treatment for your condition all the more challenging. My hat's off to you for persevering, especially given all the barriers that the condition itself imposes.

The second article was especially striking to me for its readiness to say that several seeming co-morbidities may actually be reactions to the hypersomnia itself. For others who may be reading this post:

"There is an understanding and allowance for the frequent existence of comorbidities, such as chronic fatigue and depression, keeping in mind that some apparent comorbid conditions may instead be manifestations of living with chronic [hypersomnulence]."

One footnote, on the (very) off-chance it would be helpful. From experience with connective tissue disease (a family of autoimmune diseases) I know that CTDs often don't fall into neat diagnostic categories. My primary care physician ran a lot of tests for my deep fatigue and came up with close to nothing. She referred me to a therapist and a rheumatologist, and the rheumatologist asked the right questions and made the right observations (telangiectasia, Reynaud's, Sjogren's, leg-muscle twitches) and ordered some new tests that were very helpful. (I used the time with the therapist to discuss my feelings about my new diagnosis.)

Please do keep us posted. I'm glad you have an MRI coming up and the possibility of off-label treatment with Flumazenil.

Mika121 wrote: ↑

Fri Jan 06, 2023 10:17 am

It really took me some time to read most of your previous posts on the forum since English is not my first language and there are many medical terms and abbreviations that I have to look up one by one lol

I am very surprised that it seems our experience is very similar!
I used to be a very energetic person who just needed 6-7 hours of sleep and didn’t feel any sleepiness or fatigue during the daytime. Things changed from the end of 2019. I started facing issues with getting up at my normal morning time, feeling sleepy during the day and finding it hard to concentrate. At that time, I thought I had just worked too hard and needed more sleep and rest.

Things got much worse in Feb. 2020. I found I could barely get out of bed. I felt like I was covered by a glass helmet: unrefreshed sleep, brain fog, and extreme fatigue. Like you said - a zombie. I first thought It was relevant to my hyperthyroidism. I had Thiamazole at that time. But in the end, the endo specialist ruled it out since my numbers for TSH, T3, and T4 were very good.

And then, Covid 19 swept the US. Long story short, It took me 6 months to get an appt. with the sleep specialist and do a sleep study. The result showed I have mild sleep apnea with an AHI of 13.5(?). The doctor said he was surprised to see a woman like me - young(28), thin(100 lb), and not snoring at all - has sleep apnea. But he was glad that there was a chance that we could expect the CPAP to help me out. Otherwise, he would prescribe me a stimulant.

I got the dreamstation from the CPAP supplier in Oct. 2020 after I had suffered for 8 months. I should say the first three days were great. I felt refreshed which I hadn't experienced for such a long time. But after, I was right back to where I started. So I understand how frustrated you are now. The CPAP supplier even told me: we have patients whose AHI are much higher than you, but they don't have as severe symptoms as you. This machine may not be able to help you. God knows how hopeless I was at that moment.

I started looking for some resources online and found an article that said Scores for OSA don’t always correlate with symptoms
https://www.health.harvard.edu/blog/tre ... 20061520154
This article gave me confidence even though I don't know if it's authoritative. I hope it can give you some confidence as well!
If I remember correctly, I started re-feeling better after 2 months. I cannot say I am back to what I was before 2019. But I can at least function okay and do some work instead of staying in bed and feeling like I am disabled.

In the past two years, wfh saved my life. I could basically do my job by using CPAP every night. But my energy level is still much lower than in the past. I sleep a lot more - 9-10 hours. If there were days that I lacked sleep or was too tired, I would need 3 days or more to recover. But it's much better than not using CPAP, right?

Recently, my boss forced us to work on-site every day. He is old school and stubborn. It's really difficult for me since it takes me about 2 hours to commute both ways. I always feel exhausted at about 2 PM. And when I get back home, I am not able to do anything but sleep.

I just want to let you know. You are not alone. Be patient and confident!
We can find our answers together! I am planning to see the sleep doctor again and start using Oscar to analyze my sleep. Sometimes, my AHI was very low, but I still had a bad day.

Please keep us posted! I will also share my updates with you!