. . . so I decided to write a post in response to a post by Michelle at Living With Bob. What would I write to a person newly diagnosed with dysautonomia?
First I’d say, oh hey HI! Then I’d say I’m so sorry you have to go through this, especially the frustration of dealing with a medical establishment that doesn’t know what to do with you. But if it makes you feel any better, there are a LOT of people with nerve disorders on the internet, mostly ‘cuz there’s nowhere else to go.
Not that we all call it Dysautonomia, because many of us never heard of that particular term. Only one doctor, an endocrinologist, has used the word with me, right before he said “but that’s not my specialty” and pushed me out of his office.
Sometimes I call myself Randomly Autoimmune, because at least most people understand that. Whatever it is though, you and I have got it, “it” being a syndrome of annoying, frustrating, painful and sometimes life-threatening nerve symptoms that go by many names because there are so many ways the disorder can express itself within the body.
Fainting Goats . . . although they don’t really faint.
Sometimes I pass out. My mother and sister have the same thing; my sister is on a pacemaker now. Vasovagal syncope appears to run in some families. At least my mother and I are no longer misdiagnosed as having seizure disorders, because it’s a bitch to get insurance and obtain a drivers lisense when the world thinks you’re epileptic.
Then there are the other symptoms. Sometimes I can’t stay dehydrated no matter how hard I try to drink plenty of water. I also eat plenty of salt, but there are days when the fainting and peeing are so bad, the only thing I can do is head to the ER with chest pains so that I can get an IV hookup. It’s expensive, but it is what it is, and no, there is not other option for me at this particular point in time: All my diagnostics have come out normal. I’m “fine.” There is nothing wrong with me. Officially.
Our symptoms, our “episodes,” may SEEM random, but there is a trigger, I’m sure of it. We just don’t know what it is yet. I’m still experimenting, and keeping an eye out on the horizon and my ear to the ground for a cure. In the mean time, the following approaches, achieved by trial and error over a decade, have made the difference between my having a public life, and being stuck in bed. As always, Your Mileage May/WILL Vary (YMWV), but if I can save you 10 years of trial and error, perhaps my Lost Decade will have been worth the while.
But do my self-treatment strategies WORK?
It’s hard to say, when n=1. My experimentation is not scientific. However, I can say this for sure: Once life brought me to #7 I had things pretty well under control, and I was feeling pretty good. Last August 2012, I decided to take a break from all of my restrictions, supplements and coping mechanisms, and “see what happened.” I ate what I wanted. I quit taking all my dietary supplements. And I ended up in the emergency room three times in four months!
I had just one ambulance ride, fortunately. Then my eyebrows fell out.
By December I resolved to have just about every test on the planet to figure out what was wrong with me. It was all very, very expensive. I probably could have saved myself a lot of grief, and a ton of money, had I just stuck with the program. In the four months since I’ve been vigilant with my diet and hormones, I’ve had a few wobbly mornings, but nothing serious. I have not passed out since November 2012.
And with THAT, here it is!
1. Some of this WILL be funny . . . someday.
My great grandmother had a crocheted poodle toilet paper cover. I’ve been looking for one ever since.
Take Irritable Bowel Syndrome, for instance: It’s basically neuropathy of the gut. Even with a blog I can’t post anything about it because it’s too embarrassing. But now that a few years have passed I’ve realized some of my public episodes were HILARIOUS! I know I need to write them down, because they are stand-up-comedy material. I figure someday, while drinking wine with friends, or rocking at the old folks’ home, we’re going to get into a Top This! competition, and I am TOTALLY GOING TO WIN.
2. (2004) Gluten Free Living = WORTH IT
(the above is a link to an old blog post)
Let me be clear on this: I do not have coeliac disease. I have been tested. I had a blood test and a biopsy, both negative. Today it seems everyone is trying* gluten-free because it’s sort of a fad, but ten years ago you couldn’t even find a loaf of bread that didn’t taste like sawdust.
But was 2004 and my hair was falling out. I’d just suffered a miscarriage and the loss of a committed relationship and was feeling pretty devastated. I was willing to commit to a gluten free diet to try to grow my hair back.
It didn’t work. However, within about three weeks of giving up baked goods my osteo-arthritis in my neck cleared up completely. I no longer had muscle spasms or joint pain. I was able to quit my medications. My brain fog lifted considerably.
Relieved, and convinced I had coeliac disease, I sent a stool sample to Enterolab. At the time I considered myself a progressive liberal, and was suffering from Bush Derangement Syndrome, so I felt a certain sort of satisfaction about mailing a bunch of steaming crap to Texas. Anyway, the lab report came back with a diagnosis of gluten sensitivity: Their cutoff score for celiac disease was 300 and mine was 298. Close enough, you think? The lab report also told me I had the gene that predisposes me to autoimmune disease, such as diabetes and arthritis so I needed to be extra careful.
I decided that it does not matter that I do not have celiac disease, because I get horrible nerve pain, diarrhea, muscle spasms, brain fog and joint pain after a few weeks of eating conventional baked goods. When I stop eating them my symptoms eventually clear up, again, usually within two or three weeks.
So there you have it. Being gluten free is worth the inconvenience, because I had not given up on gluten I might be dignosed with fibromyalgia today.
I can honestly say that despite all my auto-immune complaints, I DON’T get migraines or joint pain anymore. Knock on wood.
The nerve pain and brain fog, however, made their ugly reappearance during my late 30’s, with perimenopause. More on that in a moment. In the mean time here are a few good links:
Glutenology Twitter feed
How Gluten can disrupt your hormones (YouTube video)
3. (2005) You can still be FABULOUS . . . it just takes a sense of humor, and the occasional good day.
I’d lose the cigarrette, though.
Dysautonomia will make you feel like crap some days, but okay on other days. Then there are days when you feel as though you beat the rap, found the cure, only to be flatted a day later by another episode. It’s times like these where you take your pleasures whenever and wherever you can, such as a bubble bath, for instance, supervised if necessary. Some doctors might tell you to avoid alchohol but you know what? It doesn’t matter. Have a glass of wine if you want. If you’re stuck at home and it’s a beautiful day, don’t be sick indoors; be sick outdoors! Bring sunglasses and a blanket, and just bask in the sun or under a tree if you’re sensitive.
I could devote my whole blog to being fabulous while struggling with a chronic illness. For now though I’ll provide just one example of how I dealt with this one thing: Alopecia (link to national website)
This is the wig I’m wearing now
Alopecia will probably never happen to you. However, if you have autoimmune problems and you are genetically susceptible, it’s possible your hair follicles may lose their immune privilege someday. It’s okay if your hair falls out. Really. It’s OKAY. I can even laugh about it now. I even think I look better now than I did ten years ago, because now I have FABULOUS HAIR! That nobody can tell is totally fake. Underneath, I’m bald, because in 2005 I shaved what was left of my not-so-fabulous hair and moved on.
Shaving my head was NOT “giving up.” On the contrary, it was my way of saying “Hair, you are being an asshole and I refuse to deal with you until you learn to behave.” It might grow back. Or, maybe not. It doesn’t really matter.
3. (2005-2012) Get Cultured
Coconut kefir smoothies . . . mmmmm.
The 411 on IBS and Kefir (from National Kefir Association)
Because my nerve symptoms include tummy trouble (which I’ve had since age 13) I usually avoid cow’s milk, unless it’s cultured, or unless I’m traveling or have company or . . . or it’s CHEESE . . . well sometime it’s just hard to avoid. Then I can’t go to the bathroom, which is also hard. Then my body tries to reject it all at once and, well, that’s when things get REALLY difficult.
Anyway, sheep and goat’s milk seems to bother me less than cow’s milk does, but that may just be because sheep and goat milk cheeses are expensive, so I don’t get to eat much of them. Coconut milk makes a decent substitute in recipes, and I eat a lot of leafy greens to get my calcium.
One kind of dairy that really does seem to help me, however, is kefir. Yogurt not so much. I think it’s because kefir has bifidobacteria and most commercial yogurts do not. More on probiotics in a minute.
4. (2006, 2010) For the Ladies: Watch your monthly cycle, but think twice before trying The Pill
Bottom line here is hormonal flucturations can coincide with the worsening of your dysautonomia symptoms. I wouldn’t be surprised to discover that most women with dysautonomia also have trouble with their hormones. Both the nervous and endocrine systems are controlled by the hypothalamus!
Birth control pills, however, are probably not the answer. They might ease symptoms at first. However over time, at least in my experience it takes about 6 months, they only cause more trouble. I blame the synthetic progestins that the body doesn’t quite know what to do with. The body needs real progesterone, but if you’re on the pill you’re not ovulating so you’re not getting it, and that’s a big problem. Estrogen, progesterone and thyroid are meant to play nice together, but when estrogen is unopposed by progesterone it interferes with proper thyroid function, and that can make your dysautonomia symptoms that much worse. More on that in a minute.
5. (2007) PLEASE don’t be insulted if a doctor suggests a brain pill.
Your dysautonomia is real. You are not crazy. However, dysautonomia can make you feel that way. Nerve pain, bewilderment, and lack of social and medical support can also make you feel anxious and depressed, and even cause panic attacks. Panic attacks are no joke: You feel as though you are dying. Any doctor who shrugs them off is an asshole.
But the doctor who suggested anti-anxiety meds? He or she is not an asshole. He or she is really trying to help you, and s/he may be on to something. Let me explain.
Low dose antidepressants MAY help you, and not just your mood! Some anti-depressants are being used “off label” to treat nerve pain, especially those in the “tricyclic” class and drugs that act on serotonin, GABA and dopamine. This is because, surprisingly, the body processes physical pain and emotional pain in the same manner. Pain is pain!
I used to think all brain meds needed to pass the blood/brain barrier to work, so I was amazed lately to discover how many brain neurotransmitter receptors live in the gut. However, antidepressants are side effects and they don’t work for everyone. They saved my life many years ago when I needed them, but I don’t take them anymore.
6. (2010) Learn the Signs.
In February of 2010 my blood platelets lost their immune privelege and I almost died. I wrote about in the above post (link to Red Dawn).
What’s the final takeaway, given it probably will never happen to you? When you are ill, sometimes you don’t have the cognitive wherewithal to do critical self-care. You need to rely on objective measures, and sometimes other people.
If you live with another person, defer to his or her judgment when it comes to whether or not to call the doctor or head to the emergency room. On a good day, come to some kind of an accord, i.e., “When X happens we’ll do Y.” It reduces the drama, which nobody needs.
If you live alone, you have a challenge, because a really bad day can sneak up on you. SO: On a good day, come up with your objective criteria, i.e., “When X happens I’ll do Y and if that doesn’t work I’ll do Z.” When I lived alone, I left notes around the house to myself, just in case. My favorite was a piece of paper I had taped to my bathroom mirror: It said BREATHE. Beneath that note was another piece of paper that said “Laugh at that, because it really is very funny.” My body actually “forgets” to breath sometimes, hahah!
7. (2011) Your hormones might need a boost to get back in balance.
It’s a chicken or egg thing: Can unbalanced hormones give a person dysautonomia? Or can dysautonomia give a person unbalanced hormones? I suspect the two problems feed off each other. I’ve discovered bio-identical hormone replacement (BHRT) in very small doses, done in such a way as to mimic a normal menstrual cycle, has relieved ALL – all! – wow! – all of my annoying hormonal symptoms, and improved my dysautonomia symptoms. It’s nothing short of a miracle.
These are the three hormones I supplement these days: Estradiol, progesterone, and thyroid. Since my thyroid levels are technically “normal” I’m using thyroid supplements from my local health food store. The estrogen and progesterone I get from my gynecologist.
I took DHEA for awhile but the reaction I got (acne) was all I needed to know that I did not really need it.
If you are in your 20’s or 30’s, you are NOT “too young” for progesterone and/or thyroid meds, especially if you’ve been ill. When women are ill or under stress, ovulation can be disrupted, which can cause hormone imbalances. Had I discovered BHRT in my 30’s instead of my mid-40’s my life would have been much more pleasant. It’s worth finding a naturopath willing to work with you to get the hormone support that you need.
8. (REAL) Progesterone is neuro-protective.
Again, I believe bio-identical Hormone replacement therapy (BHRT) has dramatically improved my symptoms. However, HRT is controversial and very political. I agree that conventional HRT can be very bad news for a lot of women. The estrogen doses are too high and the progestins are of limited use to the body. Unfortunately there are powerful pharmaceutical industry interests at stake when it comes to medical consensus on how to manage menopause and its symptoms. It’s confusing enough having to wade through it all without having to deal with the additional confusion of the definition of “bio-identical.” It’s worth doing the homework, however, even if you’re in your 20’s or 30’s, because bio-identical progesterone may help some of your dysautonomia symptoms:
NY Times article: Progesterone May Play a Major Role in the Prevention of Nerve Diseases
Scientific article: Progesterone: Therapeutic Opportunities for Neuroprotection and Meylin Repair
Unfortunately, conventional medical doctors won’t offer HRT as an option until a blood test shows you in near-menopause. If you’re in your thirties or even your forties, your typical gynecologist will offer you birth control pills instead, which are no good because they contain “progestins” or “progestogens,” which are not real progesterone. You need the real deal.
Finally, some balance
Even after a blood test FINALLY showed me as pre-menopausal, I had to pitch a fuss and switch doctors to get bioidentical progesterone. I’m so glad that I did, so even if you are still in your childbearing years I highly recommend finding a doctor who understands the benefits of natural, bio-identical progesterone. These doctors have books that may help:
Dr. Sarah Gottfried’s blog, AKA the Organic Gynecologist. She’s the author of The Hormone Cure
Uzzi Reiss’s website. He’s the author of Natural Hormone Balance for Women
The Late Dr. John Lee’s classic: What Your Doctor May Not Tell You About Pre-Menopause
9. Don’t get hung up on labels.
Now that you have a dignosis and have found other bloggers, don’t be too attached to labels or seek support only from our small-but-growing dysautonomia community: You may someday encounter a kindred spirit with fibromyalgia, or celiac disease, or orthostatic intolerance (POTS), or alopecia areata, or diabetes, or irritable bowel syndrome. Every symptom has its own internet forum, but the bottom line is that we all have IT, some kind of an autoimmune nerve disorder that SUCKS. We all “get” you. We’ve been from doctor to doctor. We’ve all felt embarrassed, frightened, insulted, misdiagnosed, and written off. Over time and through trial and error we’ve found ways to cope, and we can learn from each other.
10. Gaba Daba DOO! On finding gold at the Vitamin Shoppe.
For nerve management at PMS-time, today I prefer herbal remedies like pharmaceutical grade GABA. (by the way that link is to the only brand I trust – others have not worked for me).
I also find that Liquid magnesium/calcium supplements (more absorbable than pills) and magnesium oil (rubbed on my legs) also have a noticeable effect on my nervous system.
When my scalp and wrists give me nerve pain, I use a homeopathic capcaicin (red pepper) cream. It’s very effective.
You can find more in this Psychology Today article: Eliminate Nerve Pain Naturally
11. Eat like a diabetic, even if you’re not.
There is SO much to learn about blood sugar and auto-immune/nerve disorders that I don’t even know when to begin. I don’t have diabetes, but I have noticed my eyesight gets worse when my blood levels are (presumably) high. I also pee more when I eat sugar, which is a big problem for me since I have a hard enough time remaining hydrated.
I’ve also noticed how my dysautonomia symptoms SEEM too improve when I keep my blood sugar steady. I say “seem” because who knows? I may be rudely jerked out of my assumption someday. But for now I’m paying close attention to my blood sugar levels: Not to high, not too low, but just right, with the appropriate mixes of proteins, fats and carbohydrates. My kidneys, and probably my spleen too, have been thanking me.
12. Eat your water!
If you have trouble remaining hydrated, and pee like you’re on speed, stop with the glasses of water already. It’s clear that drinking those “eight glasses per day” doesn’t work for us.
Take this tip from Dr. Murad’s The Water Secret and start drinking your food and eating your water. Once I started living on soup and smoothies my whole system has functioned SO much better. I was even able to give up the Gatorade!
13. Bugs can be drugs!
I’ve also rekindled my interest in certain probiotics since my discovery of the Microbiome Project. This (Probifia) is what I’m taking now, and afterwards I’m going to add as many beneficial strains of bacteria I can find. When it comes to intestinal flora variety is good.
Specifically, these are the many ways probiotics can help someone with dysautonomia:
I have definitely noticed a difference since I’ve made a concentrated effort to introduce more probiotics to my system. I make sure they are enteric coated and refrigerated so they make it to my intestines still alive.
As I mentioned earlier above, kefir is also helping me a lot, so much that when I stop drinking it for a week or two I notice a difference.
14. The Future is Bright!
Right now, there doesn’t seem to be any rhyme or reason to many of our dysautonomia symptoms. But they only seem random. There is a trigger; we just don’t know what it is yet. Fortunately, researchers may be on to something, and that’s why I still have hope.
I believe that someday ALL auto-immune type nerve disorders will respond positively to the same kinds of treatments, once the researchers figure it out. They may be getting close with the Microbiome Project, although targeted treatments for specific autoimmune disorders may be 10-15 years away. I think I can make it . . . How about you? What’s been helping you?
Economist article: The Human Microbiome