It’s been about three weeks since my last post, where I’d shared the success I had with a supplement/medication that my naturopath from Bastyr prescribed. It’s called Andrographis Plus. The “Plus” indicates it isn’t only Andrographis, it’s also Amla and a blend of other herbs. See the images below:
After 22 days on the supplement, I had my first “episode”. All other episodes were the same:
Severe brain fog
High blood pressure
These episodes would last for 60-90 minutes and were debilitating. I would be so nauseous and dizzy that I couldn’t walk around. At first they happened once every three days, but rapidly began to happen every 24 hours, and then twice in a day. My blood pressure is normally 100/60 or 110/70, and has been stable like that my entire adult life. If I have a bad panic attack, it might get to the 140’s/80’s.
During these episodes, my blood pressure was 180’s/90’s. The highest one we caught was 197/94, and we almost took me to the ER. The headache and blood pressure were tightly intertwined. I could always tell when the blood pressure reading would be high by how strongly the headache throbbed.
As I’d been on the Andrographis Plus for three weeks with no issues except feeling awesome, it didn’t occur to me at first that this could be the root of the problem. I thought I had an entirely new problem, which didn’t seem that surprising considering my body appears to be a weird mess of issues all the damn time.
I went to my regular medical doctor, an intelligent, rational person whom I have great respect and fondness for, and explained what was going on. She was obviously concerned and thought it could possibly be POTS. But that didn’t really fit, and then she wondered if it might be a rare pheochromocytoma, an adrenal tumor that can cause episodes of high blood pressure, headache, nausea – basically exactly like what was happening. When I read the symptoms I thought, “Yes! That’s it!”
It’s been a week since I began noticing that my body seems to have to regained a bit more energy, and developed the amazing ability to recover a little energy when given rest and food. It’s been a really nice week, I’m so grateful for it! Things remain about the same.
I’ve gotten better at describing what’s happening, and here’s what I’ve been telling my friends and family:
Imagine that my pre-sick me had normal energy, and we gave that energy a number. Let’s call it a 10. Every day I woke up with level 10 energy. If I was really in shape, exercising a lot and getting good nutrition and feeling great, maybe I got 11 or 12 or even 13 (I imagine an Olympic athlete wakes up every day at about a 19 or so), and if I was sick, I might dip down to 8 or even 7. But in general, I was at level 10.
My sick-self, the one that I’ve been living with for the last decade, has been steadily declining. I spent a lot of years at 7 and 8. Those were good years. I could pass for “normal” most of the time. I miss those years, a lot.
In the last couple years I declined to a 5, and more recently, a 4. When I went on the antivirals prescribed for me by the doctor at Stanford, I had the worst fatigue I’ve ever known, and began living most days at level 3. I began to have a couple days a week where I was at level 2. I consider level 1 being a place where I find it hard to get out of bed, so 2 is where I am awake, I might move around the house to use the restroom, but I’m too tired to leave the house and I don’t go outside or talk much, or do anything other than stay horizontal, read, and sleep. At level 2-3, I need my family to help me with making food, getting laundry done, that sort of thing. I’m very low-functioning.
The other issue to all this is recovery. I never had good recovery. If I was at 4, and we went out and did some things, and I got down to a 3, I could lay on the couch for hours and eat a good meal, and I’d creep up to 3.4. Recovery was measured by fractions, if it happened at all. And it never went back up to where I started that day. The rule was always that if I went below what I had that day, it took at least two days to get it back.
It was a week ago, Thursday, July 27th…
…that I noticed a strange uptick in energy, and the ability to recover a little bit of energy once I lost it. Both of these things have been very significant. I’m still sick, but in the last week, here’s what I notice:
My general operating level of energy is a solid 5, that I can push to a 6 if I eat really well and get good sleep. Good sleep for me means going to bed around 11pm, and reading until I fall asleep (usually midnight).
If I start out at a 5 (or 6! wooo!), and I go out that day and do something, run an errand or otherwise use a lot energy, and drop down to a 3 or 4 (it happens frequently, my stamina is still crappy), I can regain at least 1 point and maybe 2, by laying down and resting, and by eating a good, healthy meal.
“Resting” used to mean “sleep as hard as you can for four hours”, but now a rest means, “lay down for 60-90 minutes”. I don’t have to sleep. Frequently I’ll fall asleep, but if I don’t, if I just stay quiet and don’t move and read, the effect seems to be about the same.
I went to the naturopath again this week, and I asked her, “What’s making this happen?”
She said, “Astrographis is the most potent antiviral we have. We were hoping it would attack the epstein-barr virus, and the others.”
I asked what I was really scared to ask. It took a surprising amount of courage to speak. “Will it keep going? Will I just continue to get better until I’m normal?”
She was leaning back in the chair, arms folded across her chest. She looked happy, cheerful even. Her whole face brightened. “That’s our hope,” she said. “But if you plateau, and it seems like it’s not getting better, let us know, and we’ll up the dose.”
I walked out of that appointment feeling stunned. They actually think I can get all the way better? Dare I hope for such a thing? I’ve spent the last year using much precious mental energy to come to terms with being chronically ill. Is there a chance I could someday live as a normal person?
I don’t know, nobody does. But I’m not counting on it yet. I’m so grateful for feeling better right now, but I’ll need more than one good week to change my assumptions and expectations about my body. It isn’t that I’m being pessimistic. I have a lot of hope, but I try to temper that with a lot of reality and the duty I have to myself to make the best of things with what I’ve got.
Avoiding that call to accept reality brought me dangerously close to a serious depression. I spent a couple years declining while simultaneously being very lost in a future fantasy world. I dreamt of sailing around the world, I went to bed every night looking at trip reports and sailing blogs, I dreamt about doing the Race to Alaska and taking my little boat to Mexico. These are all great, beautiful dreams, but they weren’t realistic for me then, nor are they now. It began to hurt, daily, the conflict between the world my head lived in, and the one my body inhabited. I started to feel disconnected, traumatized. I had to come back to the now. It was painful but necessary, and since then I’ve been eeeking out a real happiness based in what’s actually in front of me. I’m still frustrated, I still wish I could finish school, walk a mile, have a job. But at least I’m present, feeling that frustration, instead of burying it in unrealistic fantasies.
Being present doesn’t mean not having hope, though. I have hope that something, someday, might really change things up. It’s that hope that brought me here, to someone new. I’d even tried naturopaths in the past, several times, and gotten nowhere, but I wanted to give Bastyr another shot, and I’m glad that I did. If nothing else, I’m back to my once passionate hobby of herbalism, and I’m loving every moment of that. The plants are carrying me back to myself, and back to nature. Whether or not they can heal me completely, they’re already healing me a lot.
I’m now knee-deep in The Herbal Academy’s* introductory course, and I’m liking it very much. If you have a passion for studying herbalism, definitely give them a look. Things I like so far:
Great information, concepts are explained well. I took an online 101 course years ago that I wasn’t too impressed with, and this one just has a lot more detail and interesting information. It feels very thorough.
The website is very beautifully designed, which makes it easy to read the texts, and easy to find things. I worked as a web designer for about a year in my twenties, and I developed a real appreciation of simple and elegant formats that don’t make your brain work hard just to read text or find a link. So many people get this wrong.
The videos that accompany the lessons look professionally made, they’re well-lit, the speaker is easy to see and understand, and the information is great. I was surprised how much I learned just from the first video about how to store herbs.
Yesterday, I bought this book by Rosemary Gladstar:
Rosemary Gladstar is a rock star in the world of herbalism, and this little book doesn’t disappoint. She has two pages on panic attacks and some recipes for things to help. I’ll be trying those soon, I’m sure. One thing I really like is that she emphasizes the importance of strengthening the nervous system, which is my main takeaway of everything I’m learning about herbalism. The herbalists I read talk about herbal medicine as something we should use to fortify ourselves, and that the power of the plants is in their ability to help us keep strong and vital and balanced.
Everyone I’m reading is very respectful of the power of allopathic (Western) medicine. No one suggests that if you have cancer you ditch the chemo and just brew yourself a nice cup of herbal tea (they’d suggest the chemo and the tea!). But what they all agree is missing from our general Western worldview is this connection to plants as allies, that can strengthen our systems, keep us healthy, and give us a buffer against stress. We tend to think of herbal medicine as “alternative” when what I’m reading and hearing (podcasts!) from these people is that herbs should be the base of our health care, the root (pun intended) of our approach to medicine, where medicine is seen as balancing the body, and as a preventative of illness.
Their emphasis on learning to “respect the plants”, and “connect to the plants”, is reawakening in me a connection to the planet I used to nurture all the time, but lately, have been avoiding. For me, connecting to the earth felt spiritual, and was done with a lot of walks, hikes, and just being out there. When we started sailing a few years ago, the feeling of being out on the water was just an incredible transcendence, a feeling of freedom and even spiritual communion with nature, that left me blissed out for days. Well, since I’ve been so much sicker these last months, we haven’t been sailing at all and walks in the woods feel impossible. I’m indoors too much, and I can feel it. When I go outside and look up at the tall evergreens that line our driveway, trees I consider friends, I mostly feel sad. Depressed about how limited my exposure to nature is, right now.
Learning about the plants, especially about how they might help me in a lot of ways, is giving me back that connection, and inspiring me to get out more on the days when I have energy. I can really see why herbalists get so emotional when they talk about their own connection to the herbs they grow and use.
Rosemary Gladstar has a great website, and even a course you can take. I’d like to take her course eventually, too, but I chose a less expensive introductory course to start because I’m really working on my tendency to over-extend and over-commit myself. I tend to go all out when I start something, and then it bites me in the ass later. I get so passionate at the start that I assume my passion will follow me all the way to the end of the line in any given field, but I’ve had to learn the hard way that it’s okay to learn the basics of something and then be done. Not every passion is an all-the-way passion. It was the right choice for me to choose something relatively short and 101 (pats self on back).
Follow your Bliss….not my words (wish they were!) but the wise words of Joseph Campbell. Every day, spend time directly with the plants and above all, listen to them. They will teach you more than any book and even the best herbal teacher. We all learn at the humble roots of the plants…all the way back to the beginning of time. Let’s not forget how to listen, how to hear, their language. It is not a lost language, or languages as they speak in many tongues, but a forgotten language that is heard with the heart.
Also, study from many different teachers. Never just one otherwise we become little clone heads. Better to study with many, and to let each one inspire your own vision, to clear your eyesight to see better the world around you.
Great advice! I’d love to meet her someday!
* I’m enjoying it so much I joined their affiliate program! One of the benefits of this is that you can get a little glimpse of the more advanced training. As I figured, looking at that sample makes me want to take even more courses.
As I write this, I’m drinking lemon balm tea with tincture of holy basil. Yesterday, I’m pretty sure this combination is responsible for what I called in my journal, “Friday’s herbal miracle”. The miracle was that for the first time in weeks, I felt steady. Cheerful, too, and stable in terms of symptoms I was feeling throughout the day. I’m superstitious about talking about it (my husband recently bought me a bumper sticker that said, “I’m not superstitious: that would be bad luck”), but I’m going to talk about it nonetheless.
I have a condition, Chronic Fatigue Syndrome, that has a name. I also have some other labels: Generalized Anxiety Disorder, Panic Disorder, and ADHD. But labels only tell you so much about a person’s experience. You can make a few assumptions safely; beyond that it’s peril to assume too much. It’s interesting to talk to other people who share one or more of these labels. Sometimes we’ll be able to read each others’ minds, our experiences are so similar and have left us with the same fears, the same scars, the same neurotic little habits or perceptions. Other times I can tell that what one person experiences as anxiety, or “lack of executive function” (a common description of ADHD), isn’t at all the same as my own, which I find pretty fascinating.
Anxiety, especially, is incredibly subjective. In my fifteen years dealing with panic disorder, I’ve long since left the clinical definition of a panic attack, not that this stops any new healthcare practitioner from writing anything I describe off as “anxiety”. I saw a wonderful naturopath at Bastyr a few days ago, who asked me what my panic attacks felt like. I had to admit that she’d need to be more specific, I have a range of what I call “panic attacks”, each with its own constellation of symptoms and sensations. I was grateful when her response was, “Really? Tell me more.” I have to admit that naturopaths seem to have great people skills, which is why it’s especially frustrating that I’ve never found one who could help me with anything. Years ago, I came to this very center to be treated for fatigue (what would later be diagnosed as Fibromyalgia). They put me in a peat moss bath, and when that left me weaker and considerably anxious, threw up their hands. But, knowledge of CFS and Fibro has come a long way (not nearly far enough, but farther than seven years ago). I’m really hoping that this new start at Bastyr is the beginning of getting some real help.
Which brings me to my lemon balm tea. After two hours of discussion, my naturopathic doc and her student team came back with their recommendations, which (among other things) included lemon balm tea. I thought, “Tea? Really?” But then I remembered how into herbs I used to be, when my kids were little. I had taken a beginner’s online course through ACHS, and read a lot of books on theory, but hadn’t practiced very much beyond – haha – a few teas, an herbal vinegar or two, and I may have gone so far as a tincture. My interest in alternative healthcare modalities remained, but my interest in herbs kinda slid away. But when my doc prescribed the tea, I remembered learning about how powerful herbs could be, and it got me curious about the field again.
A day later, I bought a book about adaptogens, herbs that are particularly good at improving a body’s resilience to stress. I’ve thought for a very long time that what’s wrong with me, in part, is a very abnormally functioning stress response, so the idea of hebs that could help this, intrigued me a great deal.
Here I will stop and say, please keep in mind I’m not giving medical advice, to people with CFS or to anyone else. I’m relating my experience and my thought processes about my own symptoms, that’s it. It’s important to me that we (people with chronic illness) are able to talk about what’s happening with our health and the setbacks or progress we’re making, but it’s also important to me that even as we suffer from these frustrating conditions that don’t have any answers, that we don’t lose track of the usefulness of western medicine. It’s a hammer, to be sure, and not everything is a nail. But it’s worth noting that I’m approaching this whole thing from the perspective of someone who has checked for nails. My PCP (primary care physician) is very good at her job, and takes me very seriously, and has checked me out for many, many things that could explain the problems I have living in this body. She’s found very little to go on. It’s because I’ve checked for the big obvious things with a doctor I trust, that I’m moving toward the more subtle things.
So, back to adaptogens. One herb discussed with a lot of affection is holy basil. Traditional Medicinals makes a tea I really like called “Tulsi”, which I didn’t know until reading this book is the Hindi name for holy basil, and it’s considered a very powerful herb in India. Under the heading “Modern Uses”, the book talks about many interesting effects, but what caught my eye was its considerable anti-stress properties. It helps regulate blood sugar and cortisol. It reduced the stress of mice “exposed to acute and chronic noise stress” – which is not nice to think about. I’m not a fan of animal research. (It looks as though animal studies are unfortunately pretty common in herbal research if the descriptions in this book are any indication.) One of the authors writes that he uses holy basil to enhance cerebral circulation and memory. He has some synergistic uses (combinations with other herbs) for brain fog due to various things, including perimenopausal symptoms and ADHD. This is only a small part of what the herb is used for, please read the book if you’re interested, I’m really enjoying it.
We’re really fortunate to live near the Dandelion Botanical Company, an herb store right here in Ballard. There I bought some Holy Basic tincture from Herb Pharm. For half a day, I drank lemon balm iced tea, with a dropper full of the tincture. I think I had two tall glasses, and two dropper-fulls of herb that day. The next day, yesterday, I started my morning with that same glass of tea and tincture, and by the second glass in the afternoon, I had gone from feeling my usual new level of awful to feeling….pretty good. It was startling. I didn’t know what to do about it, at first. I had been writing my progress for the morning in my journal, and it’s kind of hilarious how it stops almost mid-paragraph to record that…waitaminute….things are…improving? Shut the front door!
At first I didn’t want to tell anyone, but then Greg texted his usual daily inquiry into how things are going, and I had to say it: “Uhhh…..good!” I said I wasn’t sure why the change, but I think it might be the herbs? Lemon balm is supposed to be great for stress and anxiety, that’s why my naturopath advised it, and then combined with the holy basil, maybe I’d finally stumbled into a modality that had something to offer my exhausted, ravaged system?
Today, I can feel that things are shifting. I slept better. This morning I woke up in less pain. Today has had a similar trajectory to yesterday: feeling not so great in the morning, but then improving considerably an hour or two after my tea. I can’t yet know anything for sure, it’s too soon. Confounding variables abound, and yet, this is the first supplement or medicine of any kind that I’ve tried that has had an effect other than “neutral” or “made it worse”. As the joke goes, “I’m intrigued, and I’d like to subscribe to your newsletter.”
I more than subscribed, I decided to take an online class. It’s perfect because I’m about to be done with yoga teacher training, and if I’m not actively learning something I feel stagnant and go a little mad. So I spent the whole afternoon searching reviews of herbal programs and finally decided to take the Introductory Herbal Course at The Herbal Academy. I’ve bought a few books, but I like having the structure of a course as well.
I don’t know where I’ll end up, but god, it feels so good to actually be excited to explore something having to do with my health. I’m so weary of this whole journey. It’s just a long slog through appointments, people with no answers, test results that lead nowhere, and lately therapy appointments centered on just coping with the damn stress of it all. Learning skills to deal emotionally with exhaustion, fatigue, and the reality that you have a disorder keeping you from fantastic things, that no one can cure or make sense of, and will likely haunt you your entire life. Maybe herbal medicine can help? I don’t know, but (almost) anything is worth a shot.