Update on me - I promised updates on my adrenal treatment from Clymer but was unable to continue because I was feeling so horrible. I think I'm lucky to be alive. This is going to be a long post...
My cortisol was already high from adrenal cortex extract prescribed from my local naturopath. He refused to retest me because I was only taking 3/8 of one pill, not 5 pills like they prescribed. First mistake.... Then I went to Clymer so I could at least get retested. My test showed high cortisol (previously flatlined low).
Dr. Neville prescribed a different sort of adrenal cortex extract that was supposed to lower cortisol. That was going ok, so then I started working on pregnenolone to raise DHEA. Second mistake..... Apparently pregnenolone can convert into DHEA or in some people it converts into more cortisol. Apparently that's unlucky me because the pregnenolone was overstimulating. I played around with it for several weeks, stopping and letting things clear out when it was too much, then restarting at a lower dose trying to find a dose I could tolerate. I think I was fascinated with it because it was helping to regulate my sleep cycle. My sleep cycle had been moving forward an hour a day for years. Anyway, third mistake....
The last time I tried pregnenolone, the nervous feeling never went away. Dr. Neville told me to wait for I think a week or two to let the pregnenolone clear out, then start on Seriphos to lower the cortisol. This went on for 6 weeks, which I reported on here.
Instead of getting better, things kept getting worse. It was like my whole nervous system had exploded.
On top of feeling like I had drunk 1000 pots of coffee, overstimulated, nervous, etc. I started having fits of agitation, shaking and moaning throughout the day, horrible acid reflux. Horrible problems sleeping and eating. I had to sleep in a recliner to at least get some kind of sleep. I was waking up a thousand times a night with my heart racing and pounding and more acid reflux. Then I started having flashes of suicidal thoughts.
That's when I started calling all my doctors for help. I asked for Xanax or something to calm me down. My doctors warned me of how addictive that is (which I already knew, having been on and off it a few times, another horrible experience, but I was desperate). They wanted me to try to work it out naturopathically. My local naturopath prescribed all kinds of calming supplements and Prilosec. The calming supps sort of helped, but not enough. The Prilosec was doing nothing. I ended up going to the ER and getting clonazepam and Pepsid. My docs also recommended getting back on Zoloft which I had discontinued about 9 months earlier and was doing fine without until the high cortisol episode.
I was feeling so horrible, it was recommended that I find a psychiatrist instead of getting psych meds managed through my GP or CFS specialist. There is a severe lack of psychiatrists in this town so the wait is at least 6 weeks. So I kept suffering with all the aforementioned problems. My GP was helpful in getting me on another proton pump inhibitor called Dexilant which works both day and night. He had me do an endoscopy - more stress. My results came back (of course) normal. My sleep was so horrible he wanted me to a sleep study. I talked to the sleep doc, but felt too terrified to do an actual sleep study. My naturopath prescribed taurine which helped calm down the heartbeats at night so I could start to sleep a little better.
I finally got to a nurse practitioner for psychiatric medication management and I started taking the clonazepam regularly and started on a teeny amount of Zoloft. For some reason, when starting on Zoloft this time I could only tolerate 12.5 mg increases (1/2 of the smallest pill they make), so to get on a therapeutic dose was going to take 2 months. Somewhere in here, I had stopped most of the naturopathic supplements because I could barely eat and couldn't get the pills down. But again the clonazepam and Zoloft were sort of helping, but not enough. More weeks of suffering.
So I've gone from August to Thanksgiving feeling like I'm going to die or kill myself, shaking, moaning, nervous, anxious, horribly sleep deprived, losing weight,etc. I was unable to watch any tv or do anything to entertain myself and pass the time. In fact, I had developed a severe sensitivity to noise, including tv, people mowing outside, etc. I mostly laid in my recliner with earplugs in, and stared blankly at the ceiling, and did a lot of praying. I would also like to add that I had great support from my family, serving me food and pills which I couldn't get myself, taking time off work to take me to doctors appointments and paying for added medical expenses. I would not have made it without them.
In early December I decided to restart all the calming naturopathic stuff along with the psych meds (checked with my naturopath first to make sure this was ok). Within a week all the agitation had stopped and I was starting to feel more comfortable. I still had no energy to speak of and wasn't sleeping well, so I worked with my naturopath on some sleep supplements. Once I added in melatonin, I started to sleep better and feel more rested and a little energy started coming back. It was a happy day when i could get my own plate of food together (this is from already prepared food, not cooking it myself).
I have continued to feel more and more comfortable and be able to do more things, although I am not back to my baseline of 25%. I would say I'm about at 15%. I'm sleeping about 14 hours a day. I am guessing that I'm in some kind of healing phase right now, so I'm being very careful about pacing and not pushing things. I did a little trial of driving to the store for some stamps. This is the first time I've driven by myself since August. The whole trip was 15 minutes and believe me, that was plenty.
Sooooo......for anyone looking for advice on adrenals. I would suggest that if you want to do cortisol and DHEA supplementation that you keep retesting often to make sure things don't get too high. But I've researched things more since this episode and found out that we probably don't really have adrenal fatigue in the classic sense and probably have no business doing these kind of supplements.
According to Rich Vank, the problem lies upstream with the hypothalmus and pituitary, which don't have enough glutathione to make the signals the adrenals need to receive to do their job. In other words, the adrenals are perfectly fine, which is why if you try to supplement them directly you could make them go too high. Then once you stop supplementation they will eventually crash back down again.
I think this makes perfect sense in my case. I've done the testing and I do have a methylation cycle block. So when I get back to my baseline and am stable for awhile (maybe in 6 months?), I plan to work on methylation. I've already had some success with it on a small level. The problem will be balancing it with discontinuing meds especially the Zoloft, because once you start raising glutathione you will start making serotonin.
The one good thing that's come out of this (outside of a lot of spiritual growth) is that I currently have a normal day/night sleep schedule for the first time in years, which I'm enjoying very much. I would expect this to go away as my adrenals crash again, but maybe I will be happily surprised.
