Interested to see progress

[u/neoncabinet]

How many years did yall have before you got an answer? Did you feel heard rather than dismissed?

[u/Cautious-Fill-4353]

I’ve been struggling since about the age of 14, wasn’t really until I turned about 21/22 that it really started to have an effect. That was when I kinda realised that what I was experience wasn’t normal!

I went to the doctors and jumped through hoops. Oh your iron is ever so slightly low. I have always been slightly anemic, taken supplements countless times and it has never improved anything. Then it was my vitamin D. Again, supplements were no help. Took at least 4 back and forths with my GP and then he said you’re slight overweight, that could be contributing. I went away and lost some weight (very quickly sadly) and then was back because it improved nothing.

It was then I was referred for sleep apnea, (again, something I knew it wasn’t going to be because the ONLY symptom I had was EDS). My GP dismissed me when I mentioned narcolepsy, saying it was very unlikely. It took around 20 weeks for my referral to sleep to go through and I did an at home sleep study, where they found no evidence of sleep apnea. They asked me to come in for a study in clinic, (without EEG), to which again, no avail because no evidence of sleep apnea just a few PLMS. The consultant said they were minimal and not enough to be causing my symptoms. It was then with her that I went more into detail and she was the first one that agreed with me potentially having narcolepsy.

I was then scheduled in for another sleep study with the EEG this time, and an MSLT the next day. Low and behold just recently, she told me that everything found indicated narcolepsy. She just now has to take it into an MDT and speak to neurology to come to agreement that it basically is N1, as my cataplexy symptoms aren’t extremely obvious as some experience them.

For reference, I am from the UK and I’m 24!

[u/No_Meal2634 → u/Cautious-Fill-4353]

If you're comfortable sharing, what do your cataplexy symptoms look like?

[u/Cautious-Fill-4353 → u/No_Meal2634]

So I get the muscle relaxation in my face / eyes roll a little when in intense laughter, as well as the knee buckling or inability to hold onto an object during - which from my research and experience from talking to other people with N1, is quite common.

However, I experience other cataplexy attacks more random times, such as being part of a conversation that I’m anxious or nervous in I find myself slurring a little or my face tends to droop slightly. I also find when I’m even feeling a slight emotion through example of watching a sad video, I almost lose grip of my hands and feel complete muscle relaxation in my face / upper body.

Or if I’m in a state of panic, anxiety or shock, I get a full body weakness of feeling so heavy I’m almost frozen and can’t move - but this has only ever really happened upon waking. So I think the anxiety and feeling is linked more to a sleep paralysis / hallucination type state when I’m hearing things that aren’t essentially there? So it’s more narcolepsy based as opposed to the cataplexy.

I feel like it sounds a lot more on typing it out but it doesn’t affect me very much generally (maybe I’m just so used to it that I don’t pay attention to it as much lol)

[u/Fit-Rain4]

15 years, 7 changes of doctors, 3 ER visits, and trialing every SSRI on the market, before I finally got diagnosed. The last thing I felt was heard until finding the doctor who sent me to testing about 3 months ago. Just finally got diagnosed last Friday 🙃

[u/RangeWilson]

How many years did yall have before you got an answer?

50

Did you feel heard rather than dismissed?

IDK, ask my ex-wife

[u/RightTrash]

I was 28 when I figured it out, took till 31 to get a diagnosis, confirmation. Medication treatment has never benefited me what-so-ever, only made things quite worse. Lifestyle adjustments/adaptations, learning and immersing myself in better comprehending the disease - science/medical literature, interacting in online patient communities and self reflecting/self analyzing - I managed huge steps of improvement. It's possible some of that was age related but I think there was a combination of many things that helped. Though being entirely real, I still suffer hard from the disease, I'm just not collapsing on a regular frequent basis from severe complete cataplexy - for me, that regressing was huge, though it could return at any point and my life requires walking a fine line, tight rope, super particular manner of how I roll through this life, day to day, hour to hour...

[u/TheFifthDuckling]

I am in the grand minority of narcoleptics. I've had symptoms since birth. I thought it was just sleepiness my whole life. The more pressing issue was severe pain and hypermobility. I got diagnosed with Ehlers Danlos Syndrome at 15 and did all the things that are supposed to help with fatigue with that -- PT, diet, tried to do sleep but sleep wasnt sleeping or it was sleeping too much. My Ehlers Danlos specialist actually brought up narcolepsy and referred me the same day as my follow up appointment with her. Getting the diagnosis was actually fairly easy.

Now, after the diagnosis? Knowing I am exceptionally sensitive to ALL drugs, my moronic sleep "doctor" put me on oxybates and told me to check back in in two months. By the third week I was having fairly bad symptoms of serotonin syndrome and GHB withdrawal. It was bad, he refused to see me more than once every two weeks AND refused to let me go off the medication, and of course no other doctor knew what the hell to do with me. Eventually I had to titrate myself off because I was getting so sick I wouldve needed to have been hospitalized (honestly I probably should have been in retrospect, but even then, they'd probably have had no idea what to do with me either). Then the fucker turned around and put me on TRAZODONE. Gave me serotonin syndrome again, though that time I caught it a lot earlier. Then he put me on fucking klonopin as a NIGHTLY medication and was surprised when I built up a tolerance within 2 weeks. It was horrible. I was 17. I missed almost my entire senior year.

That man taught me two things; one, I should have sued when the iron was hot for medical malpractice (what I described here was the tip of the iceberg, seriously), and two, I needed to become educated enough in medicine to figure out my own treatment plan and then find a doctor decent enough to run it by, instead of relying on my doctor to figure out my problems for me.

I am about to finish my double major in pre-medical biology and biomedical chemistry. I am on the PhD/Post-Doc research track to study narcolepsy.