What to do when the medication is gone?

May 13, 2015

Like many people with autoimmune diseases, I have a lot of overlapping conditions and many symptoms. My most limiting and disabling symptom right now is fatigue. The fatigue is caused by several things, among them strained adrenal glands. There have been just two things that have helped the fatigue, and I may lose both. Then what will I do?!

First, I have a form of sleep apnea. I got a CPAP machine that helped a lot!!! I loved that thing! Unfortunately, I 2014-04-23 11.03.16
developed a complication and now I can only use it for about an hour every other night. Don’t even get me started on the frustration with that! I’m still working with my sleep doctor on that, but he admits there are limited options for this particular issue, so I may just be stuck. Treating my sleep apnea would help a lot, and might be good enough that I wouldn’t need the other thing that’s worked.

The other thing is an over-the-counter supplement called Isocort, made to support the adrenal glands. It’s been amazing for me! A tiny pill or two makes me able to function fairly well every day! Sure, I’m not about to go jogging, get a job, or clean the apartment, but I can run errands, socialize, and just feel ok. I love it! Unfortunately, they stopped making it. When they stopped, patient communities online were very upset. It was the go-to nonprescription solution for adrenal insufficiency. The prescription solution is a steroid, which causes all sorts of problems for many of us. When production stopped, everyone floundered. They found alternatives with varying success. I tried a form of the most popular alternative. It helps a bit, but not at all like the Isocort did.

I now have a 4-6 month supply of Isocort left. And then what? Will I have to go back to feeling that constant strain to function?

So now I feel stuck. I have some more options, but they feel unlikely to work at best. If Isocort was still in production I wouldn’t be worried. Sure, I wouldn’t want to be on it for the rest of my life for various reasons, but I’d be glad to use it for a few years if it helped. Oh, if only!

I’ll try more Isocort alternatives. I’ll keep working with the sleep doctor. But what will I do if they all fail?

Caught in a negative sleep loop

July 20, 2014

It’s no secret that I have sleep issues. I’ve had sleep issues for as long as I can remember. My mother says that as a toddler, I didn’t nap. I remember pretending to nap in preschool so the teachers wouldn’t get mad at me for being awake. I would lay there quietly, feeling restless and bored. Things didn’t get better as I got older. My point is, sleep problems aren’t new to me. But they’re still a pain in the ass.

I got diagnosed with a form of sleep apnea earlier this year. Using a cpap machine has made a huge difference. Or at least, it 2014-04-23 11.03.16did. My problem is that the mask needs to be replaced every 3 months, and I noticed a huge difference in my sleep about 2 weeks before that 3 month time was up. But when I reached the 3-week point, I had some insurance issues, so the company wouldn’t give me a new mask. I get it from their point of view – they had no one to bill but me, and I wasn’t jumping to pay $400. Still, this was a real problem. I waited anxiously for Medicare to come through, or for Medicaid to be more solid, or something. Then, finally, I got the insurance issues temporarily settled and I got my new mask a few days ago. Relief was in sight!

But it didn’t work. It got worse. Sleeping with the cpap right now is only marginally better than sleeping with out it, and sometimes it’s worse. My adrenal insomnia has returned. When it started last year, I had no idea what was happening. I’d be sleeping normally, then wake up around 3 or 4am, and it would take 1-2 hours to get back to sleep. I finally found other people mentioning it in some of the thyroid and adrenal online groups. It has to do with a change in cortisol levels around that time. It was making all of my sleep and energy problems worse. It didn’t happen every night, but I didn’t know which would be the nights it would hit me. I was so glad when they disappeared completely with the arrival of the CPAP machine. I was sleeping through the night again!

And now it’s back.

Twice in the last three nights I had that adrenal insomnia. Twice I found myself awake at 4am. Twice I have woken up feeling like a zombie. And the night in between I slept straight through for 10.5 hours and woke up feeling unrested. Not exactly an improvement.

I would love to go to a picnic this afternoon, but I wonder if I should just stay home and rest. Some friends invited me to watch an outdoor movie with them, but I’m thinking I might be better off having a quiet night at home. Then again, since I seem to be caught in this miserable loop, maybe I should just go out anyway, because chances are, no matter what I do, I won’t be sleeping well tonight.

[Note: I have messages waiting for both the CPAP supplier and my sleep doctor, so I’m hoping that one or both of them can help me figure out what’s going on. But today is Sunday, so I won’t be seeing any improvement tonight, unfortunately.]

Feeling too sick to remember how to feel better

May 30, 2014

If I get a cold, I know what to do. I know to drink decaf tea. I know to eat certain foods. I know which medications to take and when and why. But the second I have a fever, all that good knowledge gets lost somewhere in my brain and I forget what I’m supposed to do. When I talk to a friend or my mom, though, they remind me. Too bad they don’t know what to suggest for my extreme fatigue.

Even in my lousy state, I knew it started with all of the extra activity on Saturday. I did a lot that day, moving and being alert almost nonstop from 7am to 3pm, and I assumed that was the cause. Or maybe I ate something I shouldn’t have when I went out to lunch on Saturday. I was careful, but you never know. In the haze, I knew I shouldn’t push myself. I watched a lot of tv, read, watched movies, read, watched more tv, and read some more. I left the house for groceries and for a medical appointment, and felt much worse after each outing. It bothered me so much that no one knew why this was happening.

Except someone did. I did. Or I would have, if only I could have thought clearly. I knew I wasn’t thinking clearly. I knew there was a metaphorical strip of gauze over my brain, obscuring the information inside. Thank goodness I was able to peak under the gauze for just a moment last night. That changed everything.

Last night it occurred to me that I could take an Isocort tablet. Isocort is a supplement that can be used to help treat less severe adrenal insufficiency. At one point I was taking 5 tablets. When I eventually weaned off of it, my naturopath told me to take it occasionally as needed (and we discussed what “as needed” meant.) Thankfully, I had a fair amount left, since it’s since been discontinued. I almost never take it, but last night it occurred to me that I should. However, even in my poor cognitive state, I knew better than to take it at night. Thankfully, I knew enough to take it out and leave it with my other pills where I wouldn’t miss it.

This morning I wanted to try getting by without the Isocort. Ah, what a state I was in to think that could happen. I finally took one tablet around 1pm, knowing I still had time to take more in the afternoon if I needed to. I didn’t need to. By 3pm I was feeling much better, and at 3:30 I went out for a short walk. It felt so good!

More than the physical improvement was the cognitive improvement. The gauze lifted, and it all made sense. I should have taken Isocort preventatively on Saturday. I’ll do that the next time I’m in a similar situation. I overdid things on Saturday and that caused my adrenal gland to go on vacation for a bit. While it was lying on a beach in Malibu, I was suffering. Taking an Isocort or two on Sunday would have helped me to recover more quickly. Resting so much was the right thing to do, but I needed to support my adrenal glands also. Without that support, they weren’t about to return from their peaceful vacation away from my overwrought body. And of course, each extra bit of activity, each outing, only made me feel worse as my adrenals retreated even further.

Today is Friday. It took four days for me to realize that Saturday’s activities were the trigger to my recent downturn. It took another day to realize what I should do about it. And it wasn’t until I felt better that I figured out what really happened. So the question is, what do I do differently next time? Obviously I should take preventative measures, but usually I don’t know I’ll need to. By the time I would figure it out, I’m no longer thinking clearly enough to do it. I can write down a list of things to do the next time I feel fatigued, but that only works if I remember to look at the list. I don’t think I can trust myself, so I’ll do the only other thing I can think of: I’ll tell my parents and a few close friends what to suggest the next time I tell them I’m fatigued. With any luck, at least one of them will suggest the right thing and I’ll take that advice. But if I don’t, and if I write again about a downturn involving fatigue, I hope one of you will point me back to this post!

%d bloggers like this: