October is finally over. It’s been a whirlwind of activity and unexpected challenges, and I’m glad to have it behind us.
The move is done except for unpacking boxes, and we’re determined to not let that linger too long. We’re taking our time to carefully choose the furniture and decor items we want in our space and so far we’re very happy with our choices in feathering our nest. Our new adjustable bed is fantastic, and while I’m still in the adjustment period for it, I think it will be very good for my chronic conditions.
The Bell’s Palsy has mostly resolved, thank goodness. My doctor can still detect some very slight droop in the eye and mouth, I still have to be careful when applying makeup or moisturizer to that eye because it doesn’t close all the way unless the other eye is also closed. But my speech is normal again, and my vision is almost back to normal. The eye gets twitchy sometimes, but that’s normal due to the nerve regenerating.
I had said I was going to start doing NaNoWriMo (National Novel Writing Month) once I was done with grad school. Last year I was having flares of my conditions too bad to manage to keep up with the writing. This year I am coming off a really stressful period and just feel like it’s too much to put myself under the pressure of a deadline right now. I think it’s the better part of valor to decline yet again. I will have opportunities for NaNoWriMo camps in the spring and again next November.
Besides, it’s not like I’m going to stop being creative. I am going to work to start putting more content here on my blog on a more regular schedule. Now that I can speak normally again, I also want to start work on a project I’ve had in mind for several months which is a YouTube channel/vlog focusing on awareness of chronic illness and disability. I don’t expect to get rich, but I hope to get enough of a following to raise awareness of chronic illness, and the challenges we Spoonies face. Especially we Spoonies who are “well enough” to work, but there are trade-offs in other parts of our lives to carry it off. If I can manage to get enough followers and supporters to justify upgrading my equipment beyond my new iPhone (there’s another story in that) and my iPad, that’ll be cool too. So I’m working on several initial scripts for that endeavor, not sure when I’ll have enough material to feel comfortable starting that off, but I’m hoping by Thanksgiving and definitely before Christmas.
So… yeah. I woke up yesterday morning with an odd numbness on the right side of my tongue and my right upper lip. But had waaayyy too much to do, being in the middle of packing to move (movers come tomorrow, and we’re way behind on packing) so I went about my errands after thinking “hmm, that’s odd”.
By noon, the numbness had spread to most of the right side of my mouth, my right cheek had started twitching, and my right eye had started burning like it was dry. Really dry, like Sahara dry.
I mentally said several VERY vulgar words and took myself off to the bathroom mirror with my phone camera to do some stroke assessments. Effects limited to the face. Ok, that’s good. No problems speaking, and the fact that I remember all of the stroke assessment means my cognition is probably fine. Probably no need for 911. Did the rest of the detailed assessment and I was 99.9% certain I was dealing with Bell’s Palsy and not a stroke or anything else, really.
I’m going to interject some nurse education stuff here. What I did was damned stupid and you, Gentle Reader, should NEVER, EVER, EVER, do what I did. If you or anyone you love develops facial weakness or numbness on one side, you should hasten to an emergency department and let them determine what’s going on. I’m not a doctor, I am not trained or equipped to diagnose anyone, including myself. That we nurses and other medical professionals do it with ourselves and our families is well known, but it doesn’t make it smart. I’m not just saying this to cover my legal butt here. I’d feel horrible if anyone who read this decided they were having similar symptoms and postponed care only to find out they were having a stroke instead. When it is a stroke, time is brain. Let the professionals figure out what’s going on, don’t waste any time.
Anyway, I didn’t delay care for long, because even though I was pretty certain it wasn’t a stroke, it’s imperative with Bell’s Palsy to get steroids started as soon as possible, so I got into my doctor’s office quickly, got my diagnosis confirmed by the doc taking walk-ins (love my doctor’s office), and got a shot of steroids in my butt. I’ll be on a high dose of steroids for a week, tapering off — hello, jitters from hell — and with any luck the facial paralysis (which is MUCH WORSE this morning) will start reversing soon and be over in a few weeks.
I *so* didn’t need this right now. Which of course, is why it hit right now. The medical literature insists that Bell’s is not caused by stress. However, the main culprit in Bell’s is a virus called herpes simplex virus 1 (HSV1). This is the virus that causes fever blisters on the mouth (typically), and yes, its close sibling HSV2 is the dreaded genital herpes. You can get HSV2 on the mouth and HSV1 genitally as well, but they tend to prefer their normal sites of infection. I have horrible fever blister outbreaks, my primary doc has never seen anything like mine. It’s been confirmed to be HSV1, so it’s most likely the cause of my Bell’s.
My fever blister outbreaks have specific triggers, and while stress doesn’t usually cause it all on its own, like so many other chronic conditions like my autoimmune ones, stress primes the pump and makes flares or outbreaks that much more likely. So the stress of the move very likely primed the pump and my lovely reservoir of HSV1 virii decided to jump from one nerve bundle to another and play havoc with my life this week. I developed an allergy to the medication they treat HSV with, so all we can do is hit it with the steroids to take out the inflammation.
Oh, and having migraine disorder also puts one at higher risk of Bell’s Palsy as well. Joy.
Once one has had an episode of Bell’s, they are also more likely to have repeat episodes. So I have that to look forward to.
Life as a Spoonie is often one surprise like this after another. All I can do is roll with it and try to keep a positive attitude. After all, Bell’s Palsy is a temporary and treatable condition. It’s annoying as all hell, but it’s not debilitating.
So for all my Spoonies out there, I hope you’re able to find at least one positive in your life to focus on today.
Fair warning: tonight’s blog post is going to be long, mainly because it’s going to be educational. It’s also going to include more than a bit of ranting about what I consider to be improper and completely negligent medical care.
Legal disclaimer: the information I share is in no way intended to be used to diagnose or advise treatment for anyone. I am not a physician and am not offering any kind of individual medical advice. If you have any medical questions, you need to direct them to your personal physician, and if you believe you are having a medical emergency, you should seek immediate treatment via your respective Emergency Services.
Tonight’s blog is inspired by a friend of mine who is in her 30s and is suffering from chronic, frequent migraine attacks. She hasn’t shared with me her exact age when she started getting them, but she indicated childhood and we can assume at the very least since puberty (since that’s when they typically go nuts for most of us biological females). For her entire life, her medical providers have blown her off, telling her that her headaches are nothing major, something women have to get out of doing things, they probably aren’t migraines, and/or she’s over-blowing them. She’s been offered Excedrin for treatment and advised to change her diet, try yoga or meditation. Her mother has received the same treatment. As such, she has been denied education about her SERIOUS NEUROLOGICAL CONDITION, treatment of same, and in my mind this care has been completely improper and negligent.
This makes me want to scream and bash things. I have migraine disorder, it runs in my family. I’m also a nurse who got an in-depth education about the disorder after my daughter was hospitalized for a week with a rare form of migraine. The nurse educator and patient advocate in me was in shock hearing my friend’s story about all the doctors who have deprived her of not only relief but also of any level of knowledge and understanding about her disorder for all these years.
So for everyone out there who has faced the same thing, know that at least one medical professional hears you, and gives a damn. While your experience may not reflect this yet, trust me that there ARE physicians and other providers who also give a damn, and they WILL listen to you, they WILL work with you to get your condition under the best control possible. THERE IS HOPE.
My primary physician manages my migraine disorder. A few years ago my symptoms changed and I started having blurred vision in one eye with the migraine attacks. She sent me to a neurologist to make sure it was just the migraine disorder as I’d never been evaluated by a neurologist, and there are a few other things (all are pretty bad) that it could have been. Once he reported back that yes, my brain looks just like a migraineur’s brain, this is just a new migraine symptom for me, she took back over. She has been determined to help me get my migraine attacks under control. At their worst, I’d have 2 or 3 a week. A few months ago when I had a follow-up with her, I was down to pretty much one a month with my menstrual cycle, and another one a month with weather fronts. She wanted to try tweaking the meds it had taken us about 8 months to get to this point, to try and knock out the PMS attack. I laughed at her and told her I’m fine with where I’m at. I have meds and other therapy that knocks out the attack within an hour, that this is completely workable for me. I tell this story to demonstrate that there ARE physicians out there who will work to beat the migraine monster into submission.
One other thing I can offer is some basic education about migraine disorder and some resources that I have found to have good solid information and tools. The resources I cite are not the only ones out there, the internet is vast. These may not even be the best ones, they’re just ones I’ve found to be helpful and trustworthy. Please feel free to comment and share ones you like.
First, let’s get some vocabulary down. Many people refer to the headache itself as “a migraine”, as in “I get migraines.” I have tried to stay away from that usage in this post, though I do fall back on it in casual conversation. It’s not accurate, even if it is easier to say. Migraine is a neurological disorder, and it’s MUCH MUCH more than just a headache. In fact, there are 4 clearly defined phases in the migraine cycle: prodrome, aura, headache, and postdrome (hangover). Not all people with migraine get the aura, so some people only get 3 phases. Here’s a great site that explains the phases of a migraine attack:
Those of us with migraine disorder used to be called migraineurs. In today’s politically correct landscape, we’re advised to use person-first language and say “person with migraine” or “person with migraine disorder”. I’m an analytic person who prefers precise language, so I personally like “migraineur”. But I see the point. I just don’t see it as a hill to die on.
So, to wrap up the language: I have migraine, or I have migraine disorder. I then suffer migraine attacks. One phase of those attacks is the headache, or migraine headache. Fun, right?
Incidentally, there are a BUNCH of different types of migraine. The classic migraine has all 4 phases and is also called migraine with aura. There is also common migraine or migraine without aura, which is just what it sounds like. Silent migraine which is the prodrome/aura/postdrome with no headache – so you get all of the odd neurological symptoms but no headache to clearly tell you what’s going on – fun, right? Some researchers consider cluster headache to be a type of migraine. There are the rare types: basilar, hemiplegic, brainstem aura, abdominal, ocular, vestibular. These more rare types can occur with or without the headache portion, and several of them are often mistaken for strokes. Fun, right? If you get them only every so often, they are episodic. If you get them frequently, or at regular intervals they’re chronic.
Then, there’s the impact. The physicians who are negligent like my friend’s, focus only on the number of headaches. Some who do a little better ask how many days you miss work or school. However, the providers who know what they’re talking about ask how many days your life was impacted – work, school, or leisure activities. Not just missed, but days you weren’t at your best or didn’t do things you wanted to do. And then they look at the days AROUND those days because they know that the prodrome and postdrome affect AT LEAST 1 day before and after.
One of the reasons I get so upset when physicians blow off migraine is that we migraine warriors are at higher risk of some serious stuff. I do not include this section to scare anyone, because I believe knowledge is power. Migraine disorder, especially some of the subtypes, put us at higher risk of stroke. This gets complicated when many of our migraine symptoms are the SAME SYMPTOMS as those of stroke. It’s very important for us to know what our “normal” is, and know when something is definitely NOT “normal” because that’s when we need to go to the ER and get it checked out. Chances are, it’s just a particularly bad migraine, but we have to be careful. There’s also a very rare migraine caused hearing loss. Again, do not be scared about any of this, just learn to be very aware of your body, and listen to it when something is not right.
Ok, let’s move onto something more hopeful, TREATMENT. There’s a lot of options out there these days, and more coming in the near future. There are several meds that can be used to prevent attacks, how well they work varies from person to person so often it’s trial and error but if you have frequent chronic migraine it’s worth the effort. There are also several options for what is termed “abortive” meds. The term means to abort the attack and has nothing to do with Planned Parenthood. 🙂 The most common is a family of drugs called triptans and like every other drug, some work for a given person better than others, again it’s trial and error. Some people find they don’t work at all, some people can’t take triptans. There are some others that tend to be considered less effective, but they work really well for some people.
There’s a bunch of new drugs on the market that are really expensive and are a completely new pharmacological approach to attacking migraine. They work really well (can you see this one coming?) for some people, not so great for others. Because they’re new and expensive, you usually have to have tried and failed all of the standard treatments first. But it’s good to have new options coming on the market. Not so new but still expensive are some other options like botox in the nerves at the back of the head, and some various nerve stimulation implants… people usually try these things after everything else has failed. I use a nerve stimulation device that is not an implant – it’s like a TENS unit for the forehead – and it works great for me, but it’s expensive and insurance doesn’t cover it. I spent an FSA overage on it one year instead of losing it as a known gamble, and I’m happy with it.
You’ll hear a lot about diet changes, triggers, and supplements. Take MOST of this worth a grain of salt. The conventional wisdom for decades has been that a bunch of really yummy food are all migraine triggers and must be eliminated from the diet of all migraineurs: chocolate, beer, wine, cured meats, hard cheese, nuts, MSG, caffeine, alcohol… you get the idea. New research is indicating that rather than being triggers, people with migraine get cravings for these foods during the prodrome phase and then because the headache phase follows them eating the food, it was correlated inappropriately with the headache.
Now, to be clear, you are very likely to find that one or two food items really are a trigger for you. If you suspect this, a food and migraine journal can be helpful. For me, it’s Nutrasweet. For years, I was downing my migraine meds with a Diet Coke, and we couldn’t figure out why the meds weren’t working right. Doh. I also can’t drink beer or red wine. But the rest of the “naughty list”? No problemo.
For supplements, the only one with any real scientific evidence behind it is magnesium and the evidence isn’t overwhelming. Try it (but cautiously – loose stools is a side effect of magnesium supplements) and see if it helps, it can’t really hurt anything except the aforementioned side effect. Incidentally, there are several formulations of magnesium supplements on the market, and amateur nutritionists will argue about which is best absorbed in the body – there isn’t a good answer, but some formulations have less of the side effect for each person than others, so if you think magnesium helps you can try different formulations to avoid the side effect. Others that can be helpful are riboflavin (B2), CoQ10 (no real evidence for migraine but it’s a good supplement to take in general), butterbur (a few small studies show positive effect), and feverfew (again, a few studies show positive effect). Anything else very likely doesn’t have any real evidence. CBD is the new kid on the block, and there’s a lot of anecdotal evidence, but no real scientific evidence, so you’re on your own there.
A note about supplements… if you are on any prescription meds, you really should check with your doctor and/or your pharmacist before adding in supplements. Natural doesn’t mean safe. Interactions with meds can do nasty things like damage your kidneys or liver (every chemical you put in your body has to get processed out through one or the other) or cause other weird side effects. Better safe than sorry. Most doctors don’t really know anything about supplements, but they should be able to look them up. To be really safe, check with the pharmacist, they’re the experts in HOW the meds work and interact.
Your Aunt Mabel or cousin Jane will tell you if you go gluten-free, or Paleo, or Atkins, or keto, or Whole 30, your migraines will go away because it worked for the 3rd nephew twice removed of her neighbor’s co-worker. Seriously. Everyone and their dog will tell you how to fix your chronic condition which by definition DOES NOT HAVE A CURE, DAMMIT. (no, no hard feelings there) If you want to try any of these things, go for it. Some people have a positive response to [choose your adventure] diet and it does positively affect their chronic condition. Atkins almost landed me in the ER, so thankyouIllpass. MY body needs a balance of the macronutrients (protein, carbs, fats) and I’m not messing with that EVER again thankyouverymuch.
Other suggestions you might hear like yoga, meditation, tai chi, or the like are all great ideas. Anything you can do to improve your overall health and reduce stress is great and might reduce your migraine attack frequency. Might not. It is highly unlikely to be anything close to a cure-all.
Whew. Scrivener (the editor I use to write my blog) tells me I’ve written 2,343 words at this point. Da-amn. And I’ve really just scratched the surface. I’ve been a migraineur for about 35 years and have been very lucky with providers that not only treated me without prejudice but also educated me about my condition. Science continues to move forward, and new research is coming out regularly on neurology and migraine. It’s only going to get better from here.
Anyway, I’m going to list some resources here and then sign off. I’ll probably blog more about migraine in the future, especially if people let me know they want more content in this area.
The ultimate source of information, the American Migraine Foundation. Their resource library is extensive, and it’s easy to fall down the rabbit hole of research there. Of course, with so much content, sometimes it’s hard to find something specific I’m looking for quickly, but the site is great. There’s also a provider search.
Another great source of information, the National Headache Foundation. They don’t focus just on migraine, but they have good migraine resources. They also have a YouTube channel with some good panel discussions if you like videos.
For support groups, there’s a ton of them out there. I only participate in one, because I don’t need a lot of support at this point in my journey. I have found that every group has a personality and I recommend checking several out and finding a select few that are a good fit for you.
The one I participate in is Migraine Nation – a closed Facebook group moderated by Lindsay Weitzel Ph.D. who has migraine herself and hosts podcast/videocasts with the National Headache Foundation and features physicians and researchers and other people in the headache/migraine community on great topics.
There’s probably support groups in other media out there, but let’s be real… all media is Facebook. 😀
So, my gentle reader, if you’ve made it this far you deserve a medal of some sort. If you have migraine disorder, I hope this has been of some use to you. If you don’t have it but know someone who does, I hope this has given you some insight into their world. If you don’t have it and don’t know anyone who does, why in the hell did you read all this?!? (Seriously, comment below.)
Whatever the case, I wish you the best. (And if you have a physician/provider who dismisses your concerns and issues, FIRE THEM AND FIND A NEW PROVIDER WHO GIVES A DAMN… THEY ARE OUT THERE.)
I’m coming up on a half-century on this planet, and have moved several times as an adult. Each time, I end up pressed for time, and just throw everything into boxes and swear I’m going to sort through everything and de-clutter, reduce my stuff before I move again. It never happens, because the next time I move, the same thing happens.
This time, I have plenty of advance notice and am determined to downsize, de-clutter, “Kondo”, and otherwise reduce my belongings to just what I want to carry with us to the next place. Minimalism, to a degree. It sounds like Heaven to my Spoonie heart – less stuff to manage, organize, clean, maintain. Fewer spoons needed for the maintenance of my space and stuff. Yay, right?
One problem. Getting from here to there takes a lot of spoons. In the pre-chronic illness days, I’d make like Marie Kondo over a long weekend with a few nights short of sleep and be done. Not an option now. I can clean/sort/pack/paint/whatever for about 30-45 minutes at a time. Then I have to rest for about the same amount of time. I can only do this about 5, maybe 6 times a day on the weekend. That’s not nearly enough time to get through all the things we need to get done in preparation to sell our house, de-clutter everything, and pack for the move. Oh, and find a rental property. While working full time and hopefully without triggering a massive flare.
I wasn’t prepared for the emotional work involved in decluttering. I luckily am not dealing with hoarding issues or anything like that, but I’m finding that many of the items I’m having to sort through have a lot of memories associated. Many of those memories are not good ones, and more than once I’ve wished I could just pack up the things I want from the house and walk away from the rest of it. Not really an option, though. So I just take breaks when I need to, and lean on the Mister who is being a fantastic partner in all of this.
So sorting/decluttering is happening, but it’s a slow process. I guess if it were easy and quick, I’d have done it before now. We’re probably looking at the move in about 6 weeks, and I think we can actually be done and ready for the movers in that time.
When I sat down to write my surgiversary update, I realized it had been over six months since my last post. I had planned at the first of the year to start posting updates at least weekly, if not more often. The best laid plans, and all that. Spoonie life makes it hard to juggle all the things you want to do. Energy reserves are limited, and even though sitting down and writing a few paragraphs doesn’t seem like it should take that much energy, even just remembering that you were going to do it, or getting up to get the keyboard for the iPad if you manage to remember, sometimes is too much.
I continue to love my job. I have been working on some exciting technology projects to expand healthcare interactions for patients into the digital space, which is super exciting. I also have an opportunity to move into an area of data governance which is actually a personal area of interest, so that will be exciting for me. Most people find it dull and tedious but I’m not most people. Working full-time means I have very little energy left for the rest of my life, and it’s hard reconciling that with my goals and aspirations. But it’s the reality for so many of us Spoonies. I keep reminding myself how lucky I am to be able to work full time and support my family because many Spoonies struggle with the basic necessities and access to healthcare because they can’t work or can’t work full-time.
As much as I wanted my focus word for the year to be “calm” it doesn’t appear that is to be my fate for 2019. A few months ago, Hubby and I were vacationing with some very good friends and discussing challenges we’re facing, and it became ridiculously obvious that the answer to many of our challenges is to sell our house and move closer to friends, work, and other interests and rent at least for a few years. This means that we now are throwing ourselves into decluttering, packing, and house repairs so that we can get our house on the market and start looking for a rental in our target area. Not “calm” at all! Calm may be on the other side of this, but it sure isn’t here and now.
Health-wise, things seem to be settling down. (Superstitiously knocking on the nearest wood item available.) I have found a new rheumatologist, and I really like her. She’s young and isn’t blowing off my increased pain with the fibromyalgia. She repeated a lot of lab work that had been done several years ago and not repeated since, and has confirmed that the psoriatic arthritis is indeed still in remission. This is good news, because while I’m still in pain, it means that there’s likely no joint damage being done at this time. She’s given me some things to try to reduce the pain levels, and admonished me to stop avoiding the mild opioids I’ve been prescribed if I need them in order to do the mild exercising we both know I need in order to reduce the fibro pain.
So that’s my life right now… working, recovering, working some more, and trying to get the house sorted, packed, and market ready when I can. Hoping to come up for air sometime soon.