HopefulwithN2

@Mathias-1023 I can relate to your list of ailments. I am nearing 50 and have been searching for answers for so very long. Long list of historical or current diagnoses from ME/CFS, POTS, OI, IH, IST, N2, migraine, occipital neuralgia, familial hypercholesterolemia, etc. I have a whole page of subjective complaints written down in a SOAP note formal by organ system. I finally got the narcolepsy without cataplexy diagnosis 3 weeks ago. Prior to that I had Idiopathic Hypersomnia diagnosed 11 years ago. 10 years ago an MRI reveal WMH on my brain and they chalked it up to migraines, even tho the report said that it could be MS. Now 10 years later, and another MRI, they are sending me back to neuro to re-evaluate for MS. Which could cause the breakdown in both my autonomic and central nervous systems. It can even be the cause of the Narcolepsy. So, I'm frustrated, too. I'm only 3 weeks into trying Modafinil, which hasn't worked in a good way yet. I feel like I'm supposed to be awake, but I'm still as tired as when I woke up unrefreshed. I've never had refreshing sleep for as long as I can remember. After reading what you wrote, I felt compelled to remind you that some of these things don't have a cure. Which is why there are bandaids. Even 11 years ago, after my IH diagnoses, they've come a long way and have another line of treatment than before. Don't give up hope. You are young and you have a lot of life left in you, even if it looks different than you may have imagined. I have 27 and 32 year old sons, so my heart breaks for you, as a mother. But don't give up. You never know what treatment is just around the corner! What combination will work to give a little boost, less pain, more energy, all the things we wish for. As far as employment opportunities go, you need to find something that you can do with your limitations and something that you love and want to do. I work remotely helping people with their technology. Several different systems, but I feel good helping others and it's something I'm good at. You have to find what works for you and get your workplace accommodations in place so that you can do it well. (I have to take at least 2 naps a day!) I hope this finds you with some support. I joined several FB support groups and it helps to know that I'm not alone and that although some people have it worse, many have it better, which gives me even more hope that I'll be in that group, someday.

I'm searching for a correlation and came across your question. Did you end up finding a good supplement? Get infusions? I was directed to a chelated ferritin by a Kaiser pharmacist and was using the FERROCHEL by Designs for Health and never got sick while taking it. I eventually stopped being anemic when I had a hysterectomy, but afterward got dysautonomia. Now I'm going to have my ferritin checked again, even though HGB and HCT have been normal for 10 years, my level of exhaustion is unbearable. I just got dx'd with narcolepsy, so it may or may not be related. I'm trying to find something else that could be causing the meds for N2 to not be working as well. Thanks for your post tho, I also take Protonix.