Tag Archives: chronic illness

Andrographis caused dangerously high blood pressure spikes, and I had to discontinue

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 headache
  • Severe nausea
  • Severe brain fog
  • Dizziness
  • Double vision
  • 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!”

Continue reading

Rediscovering herbalism

Credit to Quinn Dombrowski for this photo of holy basil!

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.

This is a great book. (And it’s not an affiliate link. I go back and forth on my feelings about Amazon, but for now I’m choosing not to use their affiliate program.)

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.

 

I rented a scooter at the zoo

An overweight woman on a scooter, with a $7 bag of kettle corn in my basket. The whole thing reminded me of an episode about obesity on some evening news program. But it didn’t bother me. I’m too tired to care what anyone else thinks. In the first half hour at the zoo yesterday, hell, in the first fifteen minutes, I felt demolished. My back hurt, my feet hurt, and the weakness was so much fiercer than my old normal (my new, more profound weakness, is my new normal). I had to keep grabbing Greg’s arm when the unsteadiness would hit. The kids were pointing and yelling about something up ahead, but all I saw was a wooden bench under a tree about twenty yards away. A few people were standing near the bench, and I silently willed them to stay standing. Reaching that bench was taking forever. Why did I do this? I looked out at the trees – our Seattle zoo is beautifully wooded – and remembered how much I’ve missed being out, lately. Going places. Just being somewhere else but my own living room. I wanted to be here, I wanted to hang out with kids in an environment that wasn’t home. But was it a mistake? Was I going to drag everyone down? Were there enough empty spots to sit, at the right intervals, to make this work?

We finally reached that beautiful wooden bench, and I sat down. Greg said, “Here, let me carry that,” and took my purse and began stuffing it into his backpack. I tried to be cheerful for the kids, but I couldn’t concentrate when they showed me things. I was so distracted by the pain, by the fear that I might have to leave early and ruin it for everyone. We went on like that, bench to rock to bench to railing, resting every few minutes, the kids traveling on up ahead and coming back to give reports, until I noticed someone rolling by on a scooter. I looked at it carefully, and realized it was a rental. The zoo had rental scooters?! I looked at Greg. “That’s a rental! We could get one! Would it be nuts for me to ride one of those?”

“Huh! Actually, that might be a great idea. Where do we get one?”

We both whipped out our iPhones (our zoo has an app) and looked at the map to see where the nearest guest services station was located. Thankfully not too far. And there was one scooter left! It was $25 to rent, with a $200 damage deposit. For the deposit they just took a rubbing of our credit card, they didn’t actually charge it. The guy said they’d never had to charge anyone the deposit. I got a little well-rehearsed speech about how to use the controls (very easy), and sat down in the scooter seat.

The relief I felt was immediate, and I was overwhelmed with gratefulness. Sitting down, the pain was over half better! This meant I could concentrate! Oh, sweet relief. I can keep up! I pushed the little plastic bar on the handlebar and the machine cheerfully scooted forward. A smooth, even ride. The guy said the battery would last all day. I started smiling! Greg and the kids started walking, and I just kept up! I wasn’t holding anyone back, I wasn’t looking for a place to sit, I was looking where they were looking. “Let’s do the bears next!” I didn’t have to get out my map and strategize how I’d make it there. I was able to take it for granted that I could get to the bears. I could get anywhere. And I could chat with my family the entire way there, instead of spending 90% of my energy just COPING. It was glorious!

 

As glorious as this gorgeous flower, which I posted to Instagram and described as a hydrangea who had changed her mind. Someone commented back and said it actually is a hydrangea, a variety called “lace cap”. I saw these flowers all over the zoo. I took a picture nearly every time. I credit the scooter with giving me the energy to spend the entire afternoon zipping over to flowers and appreciating their charm. One of the best parts of the scooter was how it conserved my energy, so that when I wanted to get up and walk around an exhibit, I could do so with far less pain and zero anxiety.

In the car on the way home. The number in the middle, the 3,543, is my number of steps. I use an app called Pedometer++. I’m estimating that the scooter saved me around 3k steps. While it’s incredibly hard to “pace yourself” with CFS (don’t ever tell a person with a chronic illness to pace themselves, if you want to avoid bodily harm), but in general, I know that I can usually to 3k-4k steps in a day without crashing, assuming other factors (sleep, digestion, etc.) are going well. So I was elated when I looked at my watch and realized I was in a great spot for the rest of the day. I could go home and rest, and probably still have a little left this evening to play a game or hang out with people. That scooter really saved my ass. I’m so glad I made the decision to use it!

 

Here’s a few more photos for family and friends:

 

We loved the penguins the best, I think. We gave them names and told stories about them.

 

This penguin is a baby. Beth named her Barbara.

 

It was a warm day, and this orangutan was high up in a hammock, with a bucket over their head to get some shade! Aww!

There is a butterfly garden now, a permanent installation!

 

Flamingos are simply fantastic. And remind me a lot of the mid-80’s. My favorite eye shadow in 6th grade was this color.

 

Miles got a blue ICEE, it stained his lips and teeth. When I told him he was adorable, he said, “Yeah, I get that a lot.”

 

 

If you don’t have a chronic illness, don’t talk about your spoons

EDIT May 18th, 2017: Several people have written to ask if they “count” as a spoonie because they have a mental illness like anxiety or depression. Yes, yes! It’s right now 6am in Seattle, and I’m about to leave on a trip with my husband to California to visit the Stanford Infectious Disease Clinic, where Jose Montoya is doing research into what causes Chronic Fatigue Syndrome. I’m going to be a new patient, and see if they have any treatments that might help me. I’ll be back on Saturday, and I want to write more about this, but in the meantime, I want to apologize for failing to clarify what I mean by “chronic illness”. ANY chronic condition that causes fatigue, is a chronic illness. I’ve lived with panic disorder for over a decade, I’m painfully aware of the fatigue that it can cause. Depression, cancer, anything that is chronic and causes fatigue, is what I mean when I say “chronic illness”. In my case, the people using “spoonie” around me in a way that made me feel invisible are normal, healthy, without any chronic issues other than the usual aches and pains of being human. They have no illnesses, physical or otherwise. That was the group I was referring to in talking about my frustration about their co-opting of “spoons” when they just mean “low energy”. 

 

The terms “spoon” and “spoonie” have shot into popularity among people living with chronic illness, as ways to describe their experience and themselves. Talking about “spoons” is a reference to energy levels. It comes from a personal story that Christine Miserandino shared on the internet around a decade ago, where she compared the daily allotment of energy that her illness allowed her, to a handful of spoons. Sitting in a cafe that day, her purpose was to explain to a friend what it was like living with a chronic illness, and holding out a handful of spoons was her spontaneous idea to illustrate how much energy her healthy friend woke up with every day. She began pulling spoons out of her friend’s hand to demonstrate what we all know, how normal activities of daily life will lower energy and make the average person progressively more tired.

Then she started the process over from her perspective. She took most of those spoons away and showed her friend what was left. This was her way of saying, “And here’s how much energy I wake up with.”

Continue reading