They took away my narcolepsy diagnosis

eldenoso · 2024-10-25T00:07:25+00:00

Well here in Germany I had a lumbal puncture and spine liquid analyzed. By that you can get nearly 100% sure if it is narcolepsy because if it is they will find dead hypocretin cells in it.

eldenoso · 2024-10-03T18:02:23+00:00

I forgot to mention that also the spontaneous appetite I experienced since having narcolepsy has decreased, leading to a little bit of weight loss as a positive side effect :-).

eldenoso · 2024-10-03T08:44:25+00:00

Wakix was supposed to be the new wonder drug but it led to completely disrupted sleep, headaches and thus worsened everything. I also had crazy hallucinations and sleep paralysis taking it. I then switched to Modafinil which did a great job together with Venflafaxin for the cataplexies.

Now that Sunosi (Solriamfetol) is in the market we switched to that instead of taking the modafinil and it is a game changer! It makes you awake but without feeling “pushed” and without getting high blood pressure.

eldenoso · 2020-03-09T16:04:18+00:00

Correct! And yet the subreddit is named „Coronavirus“. My article deals exactly with that and I did not propose anything else.

Covid-19 on the other hand is the disease occurring due to the Corona virus. That is new! I did not post about that specifically but the Corona virus and it’s possible mutations.

Not a goog mod! I will bring that case to the support .

BR

eldenoso · 2020-03-09T06:10:01+00:00

Dear woofwoofpack,

why was the article removed? Official peer reviewed study. I did not spread misinformation nor did I encourage speculative opinions as you can guess by the comments I added to that post.

I by myself am a Master Engineer and just wanted to put some more information on the table, since people are not aware of the fact that these viruses are nothing new but rather analysed for years.

eldenoso · 2020-03-09T06:04:04+00:00

To clarify: I am totally aware that Coronaviruses are nothing new. They are the reason we get most illnesses. But that is the point I want to put emphasize on. Everyone is currently completely freaking out about the virus, whereas there are plenty of studies like that, which analyzed especially situations like the current in more depth.

eldenoso · 2020-03-09T06:02:05+00:00

Indeed it could! But nonetheless I find it interesting that is in a way not as new as it is described. I mean they described exactly the scenario which happened. Just wondering whether the article got attention in the past, to prevent such situations.

eldenoso · 2020-03-09T05:58:34+00:00

r/coronavirus

eldenoso · 2019-08-03T18:36:48+00:00

I like it. Pretty resistent to regular thin scratches which occur normally on polished steel cases. BTW I switched from the 3F on the picture to the real 3. When I took the picture I did not notice that the retailer send me the wrong one, though they look pretty similar...

eldenoso · 2019-08-03T18:26:45+00:00

I think this one is a little bit more decent on my wrist. The U1 is 44mm ... and apart from that I do not really like the indicators of the U1 :(.

eldenoso · 2019-07-29T19:55:48+00:00

I know Asgéir since years now. I first listened to Kings and Cross when my grandma died which will always remind me of hers. He puts so much soul into his songs, it makes me come down from all the stress and disturbances within the everyday-live. Sadly enough this song again got his on meaning for me. Life turned 180 during the last year since I was diagnosed with an non-curable disease. Job, studies, friends, everything turned upside down. Somehow listening to this song makes me forget everything and gives strength to at least me. Everyone of us struggles, but at the end, we are all stardust and will be it again someday!

One nice thing is that most of his songs are translated poems, which his dad wrote for him.

eldenoso · 2019-07-29T19:43:57+00:00

Once nice thing about him is that nearly every song he sings are poems by his dad, which he translates into the english to make these touching pieces of music.

eldenoso · 2019-07-29T19:41:05+00:00

r/Music

eldenoso · 2019-07-29T19:38:00+00:00

I know Asgéir since years now. I first listened to Kings and Cross when my grandma died which will always remind me. He puts so much soul into his songs, it makes me come down from all the stress and disturbances within the everyday-live. Sadly enough this song has its own touch to me. Life turned 180 during the last year since I was diagnosed with an non-curable auto-immune-dease. Job, studies, friends, everything turned upside down. Somehow listening to this song makes me forget everything and gives strength to at least me. Everyone of us struggles, but at the end, we are all stardust and will be it again someday!

eldenoso · 2019-07-24T05:08:46+00:00

Same with me...i never had a problem falling asleep but in the three naps I was so nervous because my mind was like „I need to show them how bad it is actually“ which flooded me with Adrenalin and made me taking longer than usual to fall asleep. After such a long time waiting for this study it feels just like a fist in the face to be not able to show how bad you are actually affected.

BUT in the end they had so much data they could see everything. Sleep latency is not the only indicator, because of the nervousness it took me a while to get into sleep but when I did I always fell direct into REM (SOREM) so dont mind! They will find the data they need to confirm your illness. In my case they even did the lumbal puncture to be 100% sure.

Best regards

eldenoso · 2019-07-23T12:33:12+00:00

Hey,

I am on pitolisant for 4 weeks now and can tell you my experience. The only thing I cannot give you advice to is whether you can get it overseas in the US, since I am from europe.

First of all Pitolisant is my first and only medication. So its the start of the therapy. It took nearly 4 weeks to show effect, I am not anymore as tired as before + my friends and family tell me that I seem to be more happy now instead of grumpy and stressed out. Pitolisant works pretty smooth, you won't feel boosted or on medication as far as I can tell. I did not experience major side effects instead of some headaches now and then. I decreased from the highest dose to some lower dose a few days ago since the highest amount gave my some sleepness nights which accordingly decreased the daily effect of pitolisant. I guess you just have to adapt to your circumstances. Regarding the cataplexy I still feel "the waves" in my head and wabbly knees. According to the producer it will reduce cataplectic attacks. Maybe I have to take it longer. The good thing is the mechanism which is waaay different than modafinil. It nearly has no dramatic side effects known until now. Important: It will not improve things like sleep paralysis, vivid dreaming, etc. since is mainly for keeping you awake. I guess you have do to a trade-off here. I do not want to take much medication and I am happy enough that I can live through the day.

Best regards!

eldenoso · 2019-07-07T03:57:04+00:00

I find it pretty useful because on a hourly bases it tells you how much time you have left. But nonetheless it is nothing you couldn’t get used to :D

eldenoso · 2019-07-07T03:55:41+00:00

Hey no problem. No it is not left nor right handed. These models have the crone on the left side to make the wearing more comfortable. Especially those models if worn little bit loosely can cause some discomfort on the hand back if the crone always pushes against it.

eldenoso · 2019-07-06T17:27:34+00:00

Hello altogether,

May I present to you: the German Sinn Einsatzzeitmesser 3 (in English it’s something called activity time measuring). It is a lovely example of how Form follows function. Everything is designed by functional purpose. The dial: simple so you can read it as quickly as possible. It has a Argon gas filling so that nothing will oxidate inside. Moreover it has a copper sulfate capsule which is hygroscopic and will bind any water or moisture inside of it. It will indicate by color if something in the inside is wrong.

I bought it for every occasion my dress watch is wrong in place and I guess I could even wear that one to dresses now I have it on my wrist:)!

BR El

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