At long last my lumbar puncture results have come through! But despite that, the verdict is still out on whether I actually have narcolepsy or not! My levels of the protein Orexin turned out to be completely normal. However that doesn’t actually exclude Narcolepsy as a diagnosis because many patients do have Narcolepsy with normal Orexin levels. This can be down to perhaps the Orexin receptors in the brain actually being faulty rather than the Orexin levels being low themselves per se. And there are other reasons, so whilst Orexin levels in my spinal fluid are totally normal, it doesn’t say whether there’s any other defect causing the Narcoleptic symptoms.
So, I have a sleep examination already scheduled for May. It involves having to sleep overnight, and they will hook me up to wires and record and study my brain waves whilst asleep. It also involves being woken as well as taking many naps, so they can get a good look at what goes on in my brain between that sleep-wake state. The results from that will conclude whether I do have Narcolepsy or not, and whether I need to look elsewhere for an explanation to my body’s strange behaviour. But, to be honest, I’ve had so many tests now and so many have returned back negative that I’ve kind of become complacent that they will ever find the cause of my problem. But despite that, I won’t give up.
My main reason I wanted to be diagnosed as positive for narcolepsy in the first place was so that they could treat me with the correct medications and I could return to somewhat normal health. But that didn’t happen, so I was pretty upset at first, feeling like my hope to be cured this year was shattered. But never mind, I’ve gotten over it and I will keep pushing and prodding the doctors to do tests after tests on me until they figure out what’s actually wrong. And then once they know what’s wrong they can treat me. People in my life have been asking me if I actually want them to find something wrong with me and that the negative results are surely a good thing… but it’s not like that for me. It’s no good having an undiagnosed condition which severely impacts your quality of life with no way of knowing how to even ease the symptoms a little.
Despite that though, I have been doing some observations of my own. Nothing actually scientific of course and completely anecdotal, but I noticed that whenever I had a big problem with my health, my hormones were always involved. Specifically the hormone cortisol (is that the hormone itself? or is that epinephrine? I’m not sure, anyway…), which governs my adrenals. I did actually get tested at the doctor for my hormones and everything came back normal, but I noticed that often when they said they tested something, they either didn’t actually do it, or that they did it only half-assed (can’t think of how else to put that).
And things became even more suspicious when I noticed my fatigue and associated symptoms (drop attacks, convulsions, etc) always hit me massively when my adrenaline had got going. So I did a couple of experiments on myself which involved doing a lot of activity but in a way that my adrenaline wouldn’t get activated. What I noticed is that I could do a lot more activity that way. But as soon as I lost control and my adrenaline activated, my health spiralled again. I thought it was a strange coincidence, and remembered back to when I had the contraceptive implant in for that one month which totally fucked me up. The implant was releasing progesterone into my blood stream, which of course is a hormone. And after some research I learned that when the body is deficient in cortisol it will take from other hormonal sources. In the case of the contraceptive implant my body was somehow trying to use the progesterone as adrenaline, but it went horribly wrong.
I don’t really have a clear explanation for that but the link seemed very clear for me. Then I was given a book about how to heal the adrenals and thyroid, and decided to start the plan of treatment on myself. I bought hydrocortisone tablets, which are basically steroids and lemme tell you very expensive, and hoped for the best. I started at a very tiny dose, and here’s the kick, hydrocortisone only works well for adrenal fatigue in low doses. And that is 100% safe, so whilst everyone around me is freaking out about me taking unregulated steroids, I’m confident in what I’m doing. Plus all my learned knowledge of pharmacodynamics in the herbal medicine course has really come in handy. Besides that, I do have a mentor who was the one to give me the book in the first place.
Anyway, I have so far worked up to 10mg and I have already noticed a massive difference. My fatigue and related symptoms have reduced by half. So if I had four spoons before, now I have eight. Eight spoons isn’t anything compared to everyone else’s one hundred spoons, but it’s sure much better than four spoons. I am supposed to keep increasing the dose until I get to 30mg, and then sustain that for a period (up to a year), before very slowly (VERY slowly!) weaning myself off them. So I have some hope again that even though my Narcolepsy results came out inconclusive, something good is happening, with my own study and effort.
On top of that I am also taking a herbal remedy to support the adrenals which I made myself. I started taking that about two months before the hydrocortisone tablets and that was another big clue that something was up with my adrenals, as it helped so much more than anything else I took before. The herbal remedy specifically which I made was an Ashwagandha and Siberian Ginseng tincture. I was unprepared for how much it would help. I have a few months supply ready now, and I take that mix each morning before breakfast, and then I take the hydrocortisone after breakfast, and every four hours after that until dinner.
Now, the book I was given says that once hydrocortisone treatment has started and sustained you can begin to work on the Thyroid. The medication to treat that is called Armour, but taking that is much more dangerous than cortisol if you don’t have issues with your thyroid. The important information is that if you have issues with your adrenals, then you likely have it with your thyroid too as they affect each other. So I’ve decided to take a different route with this one to make sure I am not doing myself any damage. I will get my thyroid levels privately (and properly!) tested in a couple of months to see whether my thyroid needs topping up too. Hopefully all these steps I am taking will sort me out hormonally.
I just think that because of the insane trauma I went through my adrenals were shot and all my other hormones became imbalanced too. I’ve been thinking it’s entirely possible that complex post traumatic stress disorder is responsible for everything. For the non-epileptic seizures, for the harrowing fatigue, for the drop attacks, and for everything else. In fact those symptoms often come under the label of complex trauma. And the neurologist I saw seems to think that it’s more likely my body has just become so ill because of the emotional trauma I went through.
The interesting thing though, is that emotionally I am actually doing really well, well enough that my GP agrees with my weaning off the Fluoxetine now. I have almost cut the amount I’m taking by half, which is incredible, and I am not seeing a return of any emotional traumatic symptoms. Plus that I was weaned off the anti-psychotic Olanzapine almost a year ago now, so I am doing in well in nearly coming off most of the medication. But despite that, my body was just so shocked I think and now is just weak and broken, even if mentally and emotionally I have healed from most of what I went through.
Well that is everything I meant to write down today. Just an update about my results, treatment, and recovery. I feel like I’m doing well considering everything I have been through, and am much stronger and a better person for it. I may live with the consequences physically for the rest of my life, in some form, whether major or minor, but my spirituality has been so enriched for my mistakes, and I have learned what I failed to do the first time round. I feel like I have nearly come full circle, and maybe am back on track with my inner self.
I cannot explain everything I went through still, but my focus is no more on understanding what happened and more on learning to enjoy what time I have left on this planet, as I had not had the liberty or pleasure of enjoying the first twenty four years of my life.