billymadison Update (CPAP/Hypersomnia)

[Billymadison420]

Just wanted to update all my friends on here where things are at. I am on day three of XYWAV (i was diagnosed with Ideopathic Hypersonia). I finally got it approved.

At current, I am in bed most of the day or on the couch. It is physically hard to sit up or stand up. It's hard to stay awake for most of the day, and I require 2 to 3 naps per day. I feel drunk from sleep inertia most of the day and working from home has provided difficult, even with multiple doses of Adderall a day. It's very hard to concentrate, and I feel quite spacey. I have also seen a neurologist who has ordered a MRI of the brain, and an EEG, which, The neurologist did not feel that I had any symptoms or signs of multiple sclerosis and felt that my motor skills were fine, and that my fasiculations were benign.

On top of the XYWAV, I will be going to a clinic for either ketamine therapy, or TMS for depression. Life is looking pretty bleak at the moment, but I'm not giving up. I'm not sure why my hypersomnia is so severe or if it's possible it will go back to the way. It was just seven months ago but at this point I'm not really pretty much stuck in that happening. It seems to be stuck this way.

For the record, I did end up seeing a forensic psychiatrist with a background in sleep medicine from University of Pennsylvania. She felt it was a mixture of hypersomnia and childhood trauma manifesting at the same time. She couldn't say which was which, though, percentage-wise.

In any case, I wanted to say thank you for all your help and I hope you all have a wonderful holiday with your families.

[lynninnj]

Just wanted to update all my friends on here where things are at. I am on day three of XYWAV (i was diagnosed with Ideopathic Hypersonia). I finally got it approved.

At current, I am in bed most of the day or on the couch. It is physically hard to sit up or stand up. It's hard to stay awake for most of the day, and I require 2 to 3 naps per day. I feel drunk from sleep inertia most of the day and working from home has provided difficult, even with multiple doses of Adderall a day. It's very hard to concentrate, and I feel quite spacey. I have also seen a neurologist who has ordered a MRI of the brain, and an EEG, which, The neurologist did not feel that I had any symptoms or signs of multiple sclerosis and felt that my motor skills were fine, and that my fasiculations were benign.

On top of the XYWAV, I will be going to a clinic for either ketamine therapy, or TMS for depression. Life is looking pretty bleak at the moment, but I'm not giving up. I'm not sure why my hypersomnia is so severe or if it's possible it will go back to the way. It was just seven months ago but at this point I'm not really pretty much stuck in that happening. It seems to be stuck this way.

For the record, I did end up seeing a forensic psychiatrist with a background in sleep medicine from University of Pennsylvania. She felt it was a mixture of hypersomnia and childhood trauma manifesting at the same time. She couldn't say which was which, though, percentage-wise.

In any case, I wanted to say thank you for all your help and I hope you all have a wonderful holiday with your families.

Thanks for the update Billy. I was thinking about you the other day and really hoped you were doing well.

Good luck to you as you continue your quest for answers.

Happy Holiday to you as well. Hope you can enjoy it.

[Julie]

As the previous poster said "Thanks for the update Billy. I was thinking about you the other day and really hoped you were doing well."

Kept looking for updates, so thank you.

I do hope you find an answer and don't give up on this. Good luck and come back when you can to say Hi.

[Billymadison420]

Thanks all <3 happy holidays.

[Miss Emerita]

Appreciate the update, and really hope XYWAV will work for you. Take care.

[Billymadison420]

Just wanted to update all my friends on here where things are at. I am on day three of XYWAV (i was diagnosed with Ideopathic Hypersonia). I finally got it approved.

At current, I am in bed most of the day or on the couch. It is physically hard to sit up or stand up. It's hard to stay awake for most of the day, and I require 2 to 3 naps per day. I feel drunk from sleep inertia most of the day and working from home has provided difficult, even with multiple doses of Adderall a day. It's very hard to concentrate, and I feel quite spacey. I have also seen a neurologist who has ordered a MRI of the brain, and an EEG, which, The neurologist did not feel that I had any symptoms or signs of multiple sclerosis and felt that my motor skills were fine, and that my fasiculations were benign.

On top of the XYWAV, I will be going to a clinic for either ketamine therapy, or TMS for depression. Life is looking pretty bleak at the moment, but I'm not giving up. I'm not sure why my hypersomnia is so severe or if it's possible it will go back to the way. It was just seven months ago but at this point I'm not really pretty much stuck in that happening. It seems to be stuck this way.

For the record, I did end up seeing a forensic psychiatrist with a background in sleep medicine from University of Pennsylvania. She felt it was a mixture of hypersomnia and childhood trauma manifesting at the same time. She couldn't say which was which, though, percentage-wise.

In any case, I wanted to say thank you for all your help and I hope you all have a wonderful holiday with your families.

Thanks for the update Billy. I was thinking about you the other day and really hoped you were doing well.

Good luck to you as you continue your quest for answers.

Happy Holiday to you as well. Hope you can enjoy it.

Thank you for thinking of me <3

[Billymadison420]

So far, day 3 Of Xywav. No bad side effects. But no improvement in daytime sleepiness.

[Julie]

Expletive deleted!

But there's an answer out there somewhere... just hope you find it soon.

[kteague]

Went back and read some of your previous posts to try to get a feel for your situation. If what I say here is redundant, I apologize as I didn't read every post. Though being on meds can complicate the story as some can cause side effects, in general, pinpointing all one's sleep issues can be a long process of elimination. I have multiple contributors to my sleepiness, and the answers didn't come easy.

First thing is to do what you know. Having data to monitor my sleep breathing was my crucial first step. I couldn't fix the other unknowns but I could work toward optimizing my CPAP treatment. This piece alone gave me enough energy to delve deeper. Once sleep disordered breathing is not an issue, other contributors might become more apparent. It's a purposeful untangling. But until you can get to the point of getting healthy sleep, poor sleep will be the default blame for daytime sleepiness.

I see people have given you lots of things to consider. Have you been tested for narcolepsy as a cause of your sleepiness? If not, I wouldn't suggest getting that testing until you get your sleep as stable as possible. Testing after poor sleep can cloud the picture. I ended up finding I had PLMD, a limb movement disorder of sleep. Then the side effects from the meds to help my legs ended up causing even worse issues. Recently I've had some pretty frank symptoms of narcolepsy, but I am retired and don't mind napping so I'm ok without a formal diagnosis. My OSA is well managed and my jumpy legs are not of signficant issue these days, so my sleep is interrupted only by old age pains. Getting here took time and perseverance. Ten to fifteen years ago I wouldn't haven't bet a nickel on my chances to ever find my way to a halfway normal life. But here I am, and more functional than I ever dreamed I would be again. Please don't give up on seeking a better life for yourself. I wish you well.

[Billymadison420]

Went back and read some of your previous posts to try to get a feel for your situation. If what I say here is redundant, I apologize as I didn't read every post. Though being on meds can complicate the story as some can cause side effects, in general, pinpointing all one's sleep issues can be a long process of elimination. I have multiple contributors to my sleepiness, and the answers didn't come easy.

First thing is to do what you know. Having data to monitor my sleep breathing was my crucial first step. I couldn't fix the other unknowns but I could work toward optimizing my CPAP treatment. This piece alone gave me enough energy to delve deeper. Once sleep disordered breathing is not an issue, other contributors might become more apparent. It's a purposeful untangling. But until you can get to the point of getting healthy sleep, poor sleep will be the default blame for daytime sleepiness.

I see people have given you lots of things to consider. Have you been tested for narcolepsy as a cause of your sleepiness? If not, I wouldn't suggest getting that testing until you get your sleep as stable as possible. Testing after poor sleep can cloud the picture. I ended up finding I had PLMD, a limb movement disorder of sleep. Then the side effects from the meds to help my legs ended up causing even worse issues. Recently I've had some pretty frank symptoms of narcolepsy, but I am retired and don't mind napping so I'm ok without a formal diagnosis. My OSA is well managed and my jumpy legs are not of signficant issue these days, so my sleep is interrupted only by old age pains. Getting here took time and perseverance. Ten to fifteen years ago I wouldn't haven't bet a nickel on my chances to ever find my way to a halfway normal life. But here I am, and more functional than I ever dreamed I would be again. Please don't give up on seeking a better life for yourself. I wish you well.

Hello! Thank you for the message. I hope you had a wonderful holiday. I was diagnosed with idiopathic hypersomnia in absence of a positive MSLT. I was diagnosed based on the severity of my symptoms and the type of symptoms. Hypnagogic, hallucinations, lucid dreams every night. Sleep attacks.

There actually is not a consensus among doctors at this point. I have two doctors that believe I have idiopathic hypersomnia, and two that don’t believe that I do.

I have a long history of hypersomnia, long sleep times, vivid, dreaming,. I’m 35 now. However, it got severe over the last two years and really severe over the last seven months after my mom was diagnosed with ALS. The Camp that believes I have idiopathic hypersomnia believes it’s a combination of existing hypersomnia And psychological issues. A trauma response. The Camp that doesn’t believe that I have idiopathic hypersomnia doesn’t really know what to say. As you probably know, the MSLT is really good at diagnosing narcolepsy but not necessarily a great test for IH. Or so multiple sleep specialists and PhD doctors have told me.

When I had my PSG, there was a an impairment in the sleep architecture, but there was no PLMD. Just my moderate obstructive sleep apnea that was already controlled and the lack of the normal amount of deep sleep.

I am barely able to work from home. I have to take multiple naps during the day. The naps are not refreshing. My sleep is not refreshing. I feel sedated, drunk, and out of it. I was also seen by a neurologist and have an EEG and MRI coming up.

These were the notes from the neurologist:

“1. Memory loss (Primary)
- MRI brain with and without contrast; Future; Expected date: 12/08/2022
- EEG AWAKE OR ASLEEP ROUTINE; Future
2. Transient alteration of awareness
- MRI brain with and without contrast; Future; Expected date: 12/08/2022
- EEG AWAKE OR ASLEEP ROUTINE; Future
3. Chronic fatigue syndrome
4. Benign fasciculations
35 yo. man with history of anxiety, depression who presents with chronic fatigue, non-restorative sleep. Neurologic examination is within limits today. He reports brain fog which may be a result of the sleep disturbance. I have ordered an MRI of the brain to rule out any structural abnormality. I have also ordered EEG due to report of transient episodes of zoning out, altered awareness though overall a lower suspicion for epilepsy. Suspect REM behavior disorder though unclear if sleep studies confirmatory.
Chronic fatigue syndrome seems likely, possibly post-viral in nature.
Patient does have pes excavatum which can be associated with certain connective tissue disorders though does not appear to have other features consistent with specific connective disorder disorders.
Regarding muscle fasciculations for two years with no evidence weakness, muscle atrophy or other signs of a neuromuscular disorder, this likely represents benign fasciculation syndrome. EMG would be low yield in this scenario. He will continue to follow-up with his sleep specialist. I will follow-up with him after completion of the studies including MRI and EEG.
I personally spent a total of 60 minutes in medical discussion, documentation, and/or chart review as described in this note.”

[kteague]

Glad to hear your doctors are still pursuing answers for you. Let us know how your tests turn out and if they had any helpful revelations.

[Miss Emerita]

I'm glad you got to spend some time with a neurologist who appears to be thoughtful. In these days of very specialized medicine, I wonder whether you'd benefit from seeing several other specialists, e.g., a cardiologist to explore potential effects of your chest anatomy and a rheumatologist to run an extensive panel of tests for autoimmune conditions. (You may already have done this; apologies if you have.) And (here I feel sure the answer is "yes") has a doctor ruled out ALS? This kind of multidisciplinary approach might be especially beneficial if there's reason to suspect multiple factors may be contribution to your symptoms.

Keep us posted, would you?

[Billymadison420]

I'm glad you got to spend some time with a neurologist who appears to be thoughtful. In these days of very specialized medicine, I wonder whether you'd benefit from seeing several other specialists, e.g., a cardiologist to explore potential effects of your chest anatomy and a rheumatologist to run an extensive panel of tests for autoimmune conditions. (You may already have done this; apologies if you have.) And (here I feel sure the answer is "yes") has a doctor ruled out ALS? This kind of multidisciplinary approach might be especially beneficial if there's reason to suspect multiple factors may be contribution to your symptoms.

Keep us posted, would you?

Hi! My mother's ALS was random and not Genetic (we did the testing). So the chances would be 1 in a billion and I had a clean EMG and there was no worry about MS or ALS. I do, however, have an MRI soon. 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.

Some interesting reads:

1. https://www.hypersomniafoundation.org/ih/

2. https://www.hypersomniafoundation.org/d ... -proposal/


I have seemingly constant sleep intertia. I never feel awake at any point. I feel drunk/sedated. Some forms of Hypersomnia are being theorized to be a GABA dysfunction. There is actually an off label treatment with Flumazenil that I could possibly try that had worked in trials.

[Miss Emerita]

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.

[colomom]

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.

Good luck!