Flubba-skip-dubba

About two years ago, my neurologist added propranolol (a beta blocker for lowering blood pressure) to my cocktail for my migraine attacks. It was also added because the original medication I was on (nortriptyline) was causing my heart rate to go up a bit at rest. The propranolol has brought down my heart rate, regulated my blood pressure (which wasn’t terribly high, but was on the top end of normal), and helped my migraine attacks…and it does give me some feeling of calm for my anxiety, since it lowers my heart rate. I used to be in the 80s at rest, I’m now in the low 60s at rest.

An incidental result of being on the propranolol? My PVCs (premature ventricular contractions) all but disappeared. For almost the full two years, I would maybe get a PVC here or there, in times of stress or anxiety. Prior to the propranolol, they would be kind of regular…I had forgotten what it felt like to have them happen multiple times in a day. Multiple times in an hour. Multiple times within a few minutes. It’s irritating, anxiety-inducing, and it makes me lose my breath and cough so my throat is always irritated.

Saturday Hub and I went to do some trail hiking so we could go back to the rapids we visited over our anniversary. It was overcast, barely 60 degrees, and very comfortable. We did our hike, we hung out, walked a bit to some areas we hadn’t seen before, then made our way back to our car. Then we ran some errands and went home. I knew I was a bit dehydrated, but otherwise I actually felt fine. Even my legs were okay, which was surprising considering the hills we were taking on the trail. Sunday I also felt okay, although now I could feel the muscles in my calves kind of complaining. We ran a few more errands in the morning, but then we were hanging out and resting most of the day.

Later in the evening, after dinner, I was crocheting a blanket I’m making for a family member. I was in bed with the blanket spread out (it’s huge, y’all), concentrating on a piece of the pattern, and …flubba-pause-dubba.

Hunh.

Back to the pattern, counting to make sure I’m doing the right stitch in the right order. More PVCs come on, like every 30 seconds or so. I’m irritated at the interruption, but not yet anxious about it. It’s just a couple…only been a few minutes. It’ll probably go away.

Nope. There they are again. Multiple times in a minute, but not technically one right after another. Feels like my heart is skipping every other beat or so. Ugh. Not anxious yet, but starting to wonder why this popped up out of the blue. It’s been so long, why is it happening now? Am I dehydrated from the hike the previous day? They continue and I get nervous. It’s Sunday night, there’s no one to call, and really no reason as I KNOW that my PVCs are benign. I lived with them for many many years, but I had become accustomed to NOT having them. I’d forgotten what it really felt like to live with them. I start wondering if I can get my propranolol increased to make them go away again.

I warn my husband what’s happening, then tell him I’m going to take a klonopin so that I can try to sleep. I’m hoping it knocks me out enough to not feel the PVCs. Fortunately, it actually works.

Monday morning, the PVCs are going as soon as I wake up. Same as the night before…multiple in a minute. I cough and get up to start my day. Within an hour I’m mildly anxious and very irritated, so I call my cardiologist’s office to make an appointment. I am hoping to talk him into increasing my propranolol. I have enjoyed living my life without the PVCs. I’m expecting to wait a week or two to get an appointment, but they can see me the next day. I ask Hub to change his work schedule so he can drive me and he readily agrees. He’s a good man.

Monday I have the PVCs all morning. I take my propranolol with lunch and…the PVCs go away. I am drinking water as much as possible, in case it’s dehydration causing the PVCs. I hate drinking a lot of water, it makes my stomach hurt, but if it makes the flubba-dubba’s go away, I’ll take the stomach discomfort. But shortly before dinner the PVCs come back. The propranolol didn’t really help and neither did the extra water. Nuts.

My appointment was first thing this morning, and in the end I didn’t even get to see the cardiologist. I really like him, but apparently he was overbooked. His Physician’s Assistant came in to see me after the nurse did my routine EKG. She explained he was still in with another patient and if she could just get started, we could move the appointment along. I agreed and we talked about what was happening. She kept calling the PVCs “palpitations”, as if they might be something OTHER than PVCs. I told her I’d had them for years, the cardiologist knew about it (and saw them on a holter monitor I’d worn for 24 hours a few years ago), and they’d gone away with my propranolol. She did her exam, then told my EKG was the same “kind of off” waves that I’d had in previous EKGs. No change, good news, did I really need to see the cardiologist? I said no, but I was hoping to figure out how to make these PVCs go away again, as they really interrupt my daily living. Of course, I hadn’t had a PVC yet that morning, but…

So she set me up with another heart monitor, but these new fangled devices are small, adhere right to your chest, and don’t have any wires. After the first 24 hours you can even shower with them. The old ones connected with multiple wires and you had to haul a big pack around with you. The monitor is on as we speak, for three days, and she ordered blood work and an echocardiogram. I did the blood work before I left the building (the labcorp we use regularly is right down the hall), scheduled my echo for the end of MAY (first opening–YEESH), and headed home with my fancy contraption.

So far today (it’s nearing dinner time IRL), not one single solitary damn PVC. I’m supposed to push a button on the machine when I get a PVC and then record it in an app. NOT ONE PVC ALL DAY. I mean, yeah, that’s good news. But the doctor’s going to think I’m a hypochondriac. sigh

You can barely see the monitor sticking up out of my shirt. It’s hardly noticeable. Although I changed shirts later in the day and you can actually see the little plastic compartment holding all the electronics, but I’m fine with it.

Here’s the old style:

So here I am, all bionic and stuff, just waiting for the PVCs. Hanging out here, not flubba-skip-dubba’ing. Hopefully I can sleep okay with it…and it doesn’t try to come off. The PA wanted to do a week and I had made a noise (cuz I was picturing the old unit), but she settled with three days. When I’m done, I just put the whole thing into a pre-paid box and ship it off to the manufacturer. They print out reports and send them back to my doctor for review.

Bing-bang-boom. Flubba-dubba.

 

The body electric…

Thursday night I started feeling unwell around bedtime. As we all know, I’m not keen on medication and I use it sparingly. But I really wasn’t feeling right so I took some Tylenol and tried to go to sleep. It’s also not unusual to have trouble sleeping, and I suffered with that until about 2am. I finally fell asleep, but through the night I woke up feeling headachy and feverish. It’s pretty rare for me to have a fever, but common for me to feel flushed and hot without any fever registering. I did my best to go back to sleep. Increasingly I was waking up every 30 minutes feeling hot and achy…muscle aches, body aches. No longer just a headache, my whole body felt icky.

When I woke up that morning, I didn’t want to move from my bed. I felt exhausted and yet I literally had just woken up. I pushed myself to get out of bed, to go to the bathroom and wash my face. I got dressed and went downstairs even though everything in me wanted to crawl back into bed. I still felt hot, flushed, achy, and as I moved around I realized I was nauseated. After about an hour of sitting upright in my recliner, I took a zofran pill which is a prescribed anti-emetic (which reduces nausea). I couldn’t concentrate on anything, I didn’t open my iPad or turn on the tv. I sat in my recliner, wrapped in my blanket, and rocked in the recliner. Hub brought me our touchless thermometer thingie and I checked my temperature on my forehead. It was normal but I felt feverish. I checked the temperature on my cheek–which felt like it was on fire–and it read 100.1. Everywhere else registered normal except my cheek. I was becoming increasingly concerned that I was starting to show symptoms of Covid-19.

Over the past month or so, since I’d been feeling better migraine-wise, I had been trying to get out more often. I was joining Hub on grocery trips–as well as the farmer’s market on Sundays–even though I wasn’t always going into the stores with him. On some errand trips I would wait in the car while he ran in to the stores. It was getting me out of the house a bit and giving Hub some relief from doing all the shopping alone. We were still careful, we wore our masks and using antibacterial hand wipes when we got back into the car. We didn’t stand or linger near other people in the stores, and we still shopped quickly. I knew I was putting myself at a slightly higher risk, but Hub had been doing the same for almost all of the pandemic and he’d been spared any infection. He actually has more risk factors than I do, but he’s also always recovered faster from things than I do.

Anyway, I sat in my recliner all Friday, feeling like crap, fatigued, exhausted, feverish, chills, and achy. I ate crackers and drank water but the thought of any food at all made me feel gross. When I went upstairs after Hub ate dinner, I took my temperature with an oral thermometer and found I did have a fever. It was 99.5, but for me that’s pretty high. I usually log in at 97.1, so although I wasn’t over 100, it was a pretty big increase for me. More and more I was becoming concerned that it was Covid-19. And I got a really bad feeling when Hub admitted he, too, was experiencing a rather unusual headache. He said he wasn’t feverish, but still… He took ibuprofen and said it cleared up the headache for him. We spent about an hour trying to figure out how I could get tested on a Saturday, and after a phone call with my doctor cousin we had a tentative plan. I checked my temperature again before bed and found it was 99.8. I took two Tylenol and crawled into bed. I was anxious about potentially having Covid-19, and even moreso that Hub and I might have it at the same time.

Saturday morning I had a telehealth with a new neurologist–so I could move to the new organization where my neuro nurse practitioner moved to–so Hub and I spent about an hour trying to set an appointment for Covid testing. No luck, really, as most places don’t do appointments or drive-throughs on the weekend. I had my telehealth appointment–10 minutes–having waited longer for the appointment than it actually took to have the appointment. I checked my temperature twice that morning–both normal for me–and we took care of the dogs and headed for a walk-in testing site. When we got there they said they weren’t sure if they were accepting more patients as they’d already seen and tested 100 people (it was 11am). So we waited for them to make a decision, and when the decision was YES they would be testing more people, I filled out paperwork and the tech said to come back at 2pm. So we turned around and headed home to take care of the dogs and try to eat something. We had just finished lunch at 12:30pm when Hub got a text from the clinic that they were ready for us…and the text was about 8 minutes old (Hub missed the buzz). So we rushed back out the door and back to the clinic. I checked in and was ushered into the waiting room, which had about 12-15 chairs, but was only seating four people at a time. I didn’t have to wait long and was moved into a room where I sat for another 15 minutes or so. The doctor came in–masked of course–looking overworked and underslept. He asked me a few question, said someone would be in to do both the rapid test and the more intensive PCR test. He was gone and replaced by a nurse shortly thereafter. She shoved one Q-tip up in my nose, then followed that by shoving another Q-tip up in my nose immediately after. It was fast and not painful, just weird. She said the doctor would call me in about an hour for the rapid test, and that I needed to sign up for their portal for the PCR test that would take 2-3 days to turn around.

Within an hour the tired doctor called and said my rapid test was negative. He told me to continue to quarantine until after I’d gotten the results from the PCR test. That was Saturday afternoon…today is Monday. I got the results from the more accurate PCR test that also came back negative. It’s wholly possible that I went too early for testing and the results were a false negative. It’s also possible they are correct (my symptoms have not worsened and the fever and headaches are gone, but the chills and achiness and incredible fatigue linger) and I had/have something else going on. Or I went too early for the virus to show up, also a possibility. Nothing I can do now except go forward. I’ll try to stay away from the stores again and keep my risk as low as possible. I’m not upset for myself about that, I just hate that everything always falls to Hub. He doesn’t complain but it’s a lot of constant ongoing responsibility for him.

This Covid-19 shit is the pits. Today the vaccines hit the public and I watched the frontline workers get the first shots. I hope it works for them and keeps them safe. When it trickles down to our “group” I will take it. I’ve never had a flu shot until this year as my health anxiety has kept me from trusting the universe. I took it this year, I had no issues (except long-term bruising), and I will take the Covid-19 vaccine when it’s offered. I’m grateful to have had a negative test, and grateful to be as well as I am.

I hope you are all healthy. Sending out good health vibes to you all.

 

Farm fun

Yeah, I know, don’t be weird about it. (Trigger warning, omg so much food talk and pictures…)

A few weeks ago, when Hub took off a week for our anniversary, one of the things we wanted to do was go to a local farm to buy fresh “groceries”. It was about 30 minutes from our house and we went smack in the middle of the day so there would be fewer people there. Also, it was cold and sort of raining, so we had hopes there wouldn’t be a lot of people.

I didn’t take pictures, but I should have. We were too excited (nerd alert!) to be checking out what fresh fruits and vegetables they would have. Okay, Hub was excited about fresh bread (from a local baker) and I was hyped to get fresh dairy items (from a local dairy farm). Bad news, the dairy refrigerators were empty. We were there on a Tuesday, and learned that their dairy is re-stocked on Thursdays and were usually sold out over the weekend. Booo! Even their bread selection wasn’t great. On the upside, we bought some nice fresh fruits and veggies–including some beautiful lettuces–and we bought my father a jar of beet balls. Pickled beet balls.

That’s a giant picture of beet balls.

We also bought a jar of local honey for me. Cuz I love me some local honey. It was a fun trip, even though we had some disappointment.

The same week, we decided to check out a local farmer’s market about 20 minutes away. It was a Sunday, it was cold, I bundled up and we went prepared with our reusable bags. Although there were less vendors than we expected, we were kind of overwhelmed with the fresh fruits and veggie options. At the very first vendor, we loaded up with squashes (yellow, zucchini, spaghetti), lettuces, spinach, tomatoes, broccoli, and cauliflower. The next vender had more than 15 different types of apples (!) and multiple varieties of pears. Clearly they knew what they were doing because each apple and pear had a little sign with how they tasted/what their characteristics were. Hub picked out random apples to try, while I bought some small bosc pears (my fave), and some ginormous Shenandoah pears. I’d never heard of them before, but the description said “sweet and spicy” so I was sold. I found out later they are a variety of Bartlett pears, but they taste like a cross between a pear and a granny smith apple (it’s lumpier and bumpier than a regular Bartlett). Needless to say, I enjoyed the hell out of those (and also made Hub take me the next weekend again to get MORE). We ran across a vendor selling fresh chicken eggs and fresh duck eggs, so we bought one container of both. I’ve never had fresh chicken eggs before, and I’d never even seen duck eggs in real life before. We bought a few treats for our pups (there was a canine food/treat bakery there), and Hub bought himself a fresh, hot waffle smothered in nutella and bacon. He said it was yummers, as he was smashing it into his waffle-hole.

• 

• 

We had no plans for the chicken or duck eggs. When we got home, I decided to make homemade mayonnaise with the chicken eggs to see if it tasted any better than homemade mayo that I make with store-bought eggs. Sad spoiler, I don’t think it tasted any different. We also had no expectations for the duck eggs, we just couldn’t pass up the opportunity. I pinged an experienced baker friend and asked her what to do with the duck eggs; she suggested custard or a pudding (because of the extra richness of duck eggs), although she confessed she’d never used them before. So pudding we did (the following weekend).

Technically, Hub fried one of the six duck eggs (over hard) to see if it tasted any differently than a chicken egg. He said the differences were subtle. Meanwhile, we made a last minute run to the first farm the following Thursday, where we ogled all the delicious options in the stocked dairy refrigerators (so much fresh cheese, but I couldn’t east most of it because it would not be migraine friendly). We ended up buying a bunch of small containers of heavy cream, a couple of whole milk containers (for me and for my father), and two pounds of fresh butter (plus half a pound for Dad). Hub bought fresh cheese bread, we found more tomatoes for my father, and we headed home. Upon arriving home, yours truly pulled out some crackers (they were easily available) and slathered them in butter just so I could try the butter. OMG that butter. The farm closes for the season soon (closed by the time this posts) and I’m considering making a final run to buy more butter. Like ten pounds. OMG so good. I roasted spaghetti squash with the butter for dinner. I also roasted my other squashes (Hub doesn’t eat those) with the butter for myself for the week and YUM. I have also continued to snack on crackers with butter…obviously the crackers are just butter delivery systems. I mean eating butter straight out of the container would be weird. Delicious, but weird.

On Sunday following the dairy acquisition, we made a MAPLE PUDDING WITH THE FRESH HEAVY CREAM AND REMAINING DUCK EGGS THAT WAS SO AMAZING THAT I ALMOST COULDN’T STAND NOT EATING ALL OF IT AT ONCE. Ahem. We had doubled the recipe, it was a lot of pudding and I would have been delightfully ill if I had eaten all the pudding. We also made fresh whipped cream with some of the heavy cream leftover from the pudding recipe. I’ve never had maple pudding before, nor the duck eggs. I believe the duck eggs and the fresh heavy cream (and butter) made an amazingly smooth, creamy, riiiiich pudding. We used real dark amber maple syrup, which didn’t hurt one bit. Please, drool over it…

• 

• 

• 

• 

Also, I didn’t mention that during our anniversary week, Hub and I made gluten free funnel cake. I’ve been asking about doing this for years and we just never got around to it. It was well worth getting around to…

So much yum. And incredibly easy once you get the concept.

Not pictured, the ricotta donuts rolled in cinnamon and sugar that we decided to make since we were already heating up oil for frying. They, too, were yummalicous.

You would think all I do is eat. Jeezum wheezum. Truthfully, I have been on a very restrictive diet for my migraines and I’ve been afraid to eat anything new. Over these months of COVID times, since I’ve been able to identify some triggers that really screwed me up, I’ve been adding some items back into my diet. And since I’ve been able to get my weight under pretty good control, I wanted to splurge over our anniversary stay-cation. The funnel cake, the ricotta donuts, the maple puuuuudding…those have been my gifts to myself. To enjoy food when I want to enjoy it. And so I enjoyed, and I took the opportunity to learn to relax a little bit. I’m grateful to have had the opportunity to enjoy food again. A lot of time I eat to fuel and to watch my weight (migraine medication has helped me so much that I’m willing to take the extra effort to watch my weight while taking the meds…almost all of the options have weight gain as a side effect), so I’m learning that there is a time to enjoy foods as well.

ETA: Meanwhile, tonight I roasted more yellow squash and zucchini tonight (spaghetti squash again this past Sunday) from the farmer’s market Sunday morning. And tonight we roasted sweet potatoes from the market, and something called Honeynut squash. It’s related to butternut squash but is smaller and sweeter, and all around more flavorful. Pictures? Why yes…

• 

• 

• 

I’ve already instructed Hub that we are going back to the farmer’s market this weekend. He was agreeable. I don’t think we’re going to make the farm (with the delish dairy) tomorrow, and then they are closed for the season. Question of the day? Where will I find my fresh butttttter???

 

Monday Musings

Ever since I started taking daily preventative medicine for my migraine disease, my nightmares have been coo-coo off-the-charts weird. And vivid. At one point I was literally screaming out in my sleep, or at least so my husband says. At the time I said it was payback for his lifetime of snoring (omg the snoring), but at some point the nightmares were so vivid that I couldn’t deal with it anymore. I was seeing people looming over me in my bed (and it was like I was awake and being attacked), I was having bloody and gory nightmares of like killing and dismembering, and I was actually waking myself from my not-restful sleep.

I have been able to manage the nightmare issue by changing the time when I take one of my medications, although I do still occasionally have nightmares. I didn’t used to have nightmares, but I very often have dreams where I feel like my subconscious is trying to work things out. Or tell me something. Some of the recurring ones involve snakes (I’m terrified of snakes), sometimes biting me, sometimes not but just freaking me out. Another one is that I’m lost and looking for something or someone…a lot of times I’m in a car and trying to get home but I get lost on like a highway and can’t get back to where my exit was. Sometimes I’m in a parking lot and trying to drive out of it but I can’t find the exit, or I’m walking in the parking lot but can’t find my car. Quite often I’m alone in my dreams or nightmares, though a couple of times a sibling, parent, or Hub shows up. There are nightmares about my dogs, them dying or running away and getting killed.

The thing about this particular prompt is, I don’t usually wake up to someone comforting me. Generally Hub is out like a light, snoring to his heart’s content, and I’m lying there in the dark trying to orient myself. I don’t like to wake Hub unless it’s an emergency because he gets up early to take care of the dogs and go to work (even when he’s working at home). I’m 100% sure he would comfort me if I asked him to do so, but I don’t. I do tell him that I’ve had nightmares–which was how I found out I was scaring the crap out of him by screaming in my sleep–and sometimes we talk about them. Most often we do not, I don’t know why.

I do occasionally share the dreams or nightmares with my therapist, T, because she says there is valuable information coming from my subconscious mind.

Do you have nightmares? Are they horrible and bloody and vivid? Is there someone there to soothe you when you wake up?

 

Two years, many tears, lots of fears

I think it’s been almost two years since I posted a blog? I know I posted briefly about my migraine disease, but I’ll talk a little about it here, as well as update (in short) what has been happening.

I’m coming to you from a new little laptop that my husband helped me pick out. I had a bigger, heavier laptop that I used when I was still working on our publishing company. The laptop is still good, it works fantastic and has a terrific screen, but it weighs almost 10 pounds. I spend the majority of my time on my phone, my iPad, or the iPad Pro I inherited from my husband. I’ve become accustomed to using APPS for everything, so much so that when I needed to set up this new laptop I kept asking my husband “where’s the app for this/that?” Guys, I used to be a tech person as a career before my first illness in the early 2000s. I’m so far out of it, and so ingrained in the tablets, that I was lost with the new (windows 10) laptop. But I can’t type on the iPad or iPad pro. Not even with the little keyboards you can attach, because…little and flat. So I told hub I would forgo a phone upgrade (I hate all the new phones and my old phone works fine) if I could buy a mid-size, lighter weight laptop. He’s a sucker for me, so of course he said go for it.

So far I’m enjoying the laptop, but I haven’t used it too much as it’s just a few days old. I spent most of yesterday migrating files from my old laptop to the new one, so really I’ve only had it a day. This is my first time typing anything of any length, and not hunt-and-pecking. 🙂

On to the updates. You can read some background here and here. I’m FINALLY at a place where my medication, diet, and other bits have been helping me more consistently. I’m certainly nowhere near 100%, but I’m in a better position than I’ve been over the last three years. I’ve had to give up a lot–food and activities–even prior to COVID, and add a ton of medications and supplements (and diet and exercise and more therapy and attempts at meditation), and I’m still grieving the loss of who I was and how I was able to live.

My migraine attacks can be classic, with head pain and light/sound sensitivity, nausea, and the like. But lucky me, I also have what is called vestibular migraine, where the attacks come with vertigo, nystagmus, oscillopsia, imbalance, dizziness (different from vertigo!), and more. I can even have both sets of symptoms at the same time. Yay. I’m on two different prescription preventatives (that come with their own side effects, of course), several abortives to try to stop the break through attacks before they happen, and a benzo as a rescue, mostly for the vestibular migraine symptoms (like dizziness and imbalance, vertigo and nystagmus).

Part of my new life includes a diet change. As I was doing the Whole30, the recurrence of migraine disease happened, so I went from eating Whole30 to eating what is called Heal Your Headache diet. This diet was crafted specifically for migraneurs, helping you keep away from foods that trigger migraine attacks. Of course, as with any diet, every person is an individual. And of course, as it would happen, Whole30 is basically LOADED with common migraine trigger foods. Like nuts. And of course I was eating chocolate, and prior to W30 I was eating lots of cheese and beans. Basically, all those had to go. In the early stages of HYH diet, I ate basically the same thing every day that I knew was safe. If I ate something that triggered me, I usually had a vertigo attack, or nystagmus. Both of those symptoms SUUUUCK, so I quickly became fearful of trying different foods.

Three years later, I’m still trying to get my diet and fear of foods/attacks under control. I’m eating more variety, but still limited. I’ve been having longer periods of feeling well, then relapses again for what seemed like no reason. I’ve upped my preventative medications, added in a second (propranolol, which is a blood pressure medication that supposedly works well with the tricyclic antidepressant I’m already on), gotten the two new migraine-specific abortives, and I’m on a shit-ton of supplements. I have no idea if any of the supplements are working, but I’m kind of afraid to stop them. My previous phobia about taking any kind of medications (RX or OTC) has changed dramatically. I don’t love taking new meds, but I also don’t cry and worry and require Hub to sit with me when I take them. I guess that’s a positive? I also am more likely to take a medication to stop a forthcoming attack, because taking your meds early often makes the difference in the meds working well.

Unfortunately, it seems like some of the setbacks I’ve been having were due to eating foods that weren’t necessarily common migraine triggers, but COULD BE migraine triggers. One is gelatin (technically, fish gelatin–which I thought would be safe but was wrong about) that acts like MSG in your body (MSG is a huge migraine trigger, one of the most common). I was using vegetarian marshmallows as a snack, having one or two big ones a day, or a small handful of small ones. I wasn’t tracking this originally on my food tracker, so I couldn’t go back and look to see where and when I’d eaten them and if they corresponded with the setbacks. So when I had a big setback recently, I took the new abortives multiple days in a row and stopped eating the marshmallows, and I’ve been doing okay. Prior to this setback, I think the previous one was from brown sugar, which is made with molasses, which is fermented. Ferment foods CAN BE a migraine trigger…it was either that or oats, but fermented foods are more common. I stopped both the brown sugar and oats at the same time, but I’ll try oats again soon. Prior to that, I was eating some “safe” caramel candies in the evening as a treat. I had a setback so I stopped the caramels, but it took a long time to feel better, so I wasn’t sure it was the caramels. But recently I looked at the ingredients and saw…brown sugar. So I am avoiding those for now, too. It’s like a weird and horrible puzzle that you can’t figure out. Trigger foods can set you off the same day you eat it, or not for two weeks (as you build up less and less of a tolerance), so it’s near to impossible to figure them out.

Meanwhile, the setbacks I’ve been having the last year plus have been weeks-long episodes of oscillopsia. Oscillopsia is the sensation that the surrounding environment is constantly in motion when it is, in fact, stationary. Oscillopsia is usually a symptom of conditions that affect eye movement or the eye’s ability to stabilize images, especially during movement.

That shit is no joke. I can’t see when I move my head, and walking makes your head move. For me, the environment swings left to right in a wobbly fashion, and more recently also swings up and down in a wobbly fashion. And not one of the medications I have would touch it. Only this last relapse, where I stopped eating the marshmallows right away and took the migraine abortives three days in a row, did I get some relief after a few days. Normally I can be stuck with the oscillopsia for 10-21 days, 24/7.

Also, I don’t leave the house for anything. In the last six months, I’ve gone to my oncology appointment and gotten my mammogram. Hub goes grocery shopping every week, and runs any other errands needed. He’s been working from home every day since COVID, so neither of us is in contact with others for any length of time. Considering my health, Hub’s health, and my father’s health (who is part of our “bubble”), we are staying out of circulation as much as possible. Between COVID and my migraine disease, I haven’t eaten outside my house in over 3 years. And I haven’t eaten hardly anything that isn’t whole foods, or made ourselves at home from whole foods (with the exception of marshmallows, caramels, and popcorn…which are my snacks). We cook and bake a lot now.

It’s been really difficult, and an experience I wouldn’t wish on anyone (except maybe the asshole in the white house, but I won’t digress). Most people don’t really understand because they’ve never dealt with vertigo or the other visual issues. All of it is exhausting, physically and mentally. I’m still trying hard to find things to be grateful for every day, because I know that can make a difference. I’m also still seeing my therapist (telehealth) on a regular basis, which is helpful.

Another time we’ll talk about my father, my #2 brother (B2), my #3 brother, and various other bits and bytes.

 

Where am I

Well, mostly house-bound due to the migraines and related symptoms and episodes. I go to see my therapist and to doctor’s appointments (too many), but otherwise I go nowhere right now. I missed all the winter holidays with my family (who are almost next door) because noise and light and visual stimulation would just make the migraines worse. I also did not go to mother’s day at Hub’s mom’s house, but for more reasons than the migraine shit.

I completely changed my diet for 5 months, eating no grains, no sugar, no dairy, no gluten (well, I’ve been that way), no nightshades. I’ve lost 45 pounds (that I could afford to lose, but I lost it over 3 months which is too fast) and my food anxiety is still here. I eat the same basic foods over and over again, and I don’t eat any snacks or drink anything other than water. At the moment, I continue on this very restricted diet because I’m afraid to add anything back in because it might trigger an episode of vertigo or nystagmus.

I thought I was doing better (see my last post) but then I had multiple episodes of vertigo and nystagmus again, even when I didn’t change a thing I was doing or eating. Horribly depressed, we squeezed onto the specialist’s schedule again and made the trip to see him. One of the things he had given me initially was a prescription for klonopin and zofran. He told me to take both for the drive to his office about 40 minutes away in the city. I did, and had a very disassociated conversation with myself while we were driving and waiting for the doctor. Needless to say, if I have to use the klonopin again (it’s a vestibular suppressant), I will only take half a pill.

The specialist told me I had done all I could with diet, so he wanted to put me on a preventative medication. Unfortunately, there’s no targeted migraine medication (yet), so everything is off-label for other issues. After talking about my sleep issues, he offered me a tricyclic anti-depressant at very low doses. I have medication anxiety due to my incredible sensitivity to medications of all kinds. The first two weeks I had to wait until Hub was upstairs with me and he had to literally hand me the pills. After that (and talking to my therapist a lot in therapy), I tried to just consider the pills with indifference rather than with fear or hope. I take them okay now, but…they have side effects of course (including incredibly vivid horror nightmares that I’ve woken Hub up in the middle of the night because I’m screaming in my sleep). Even at low doses, I am sensitive. And in fact, I had started making the rounds of testing and other doctors because my hands and feet started feeling incredibly cold and both fingers, toes, and feet started turning blue-purple. Talk about anxiety! I tried to reduce my dosage of the medication, but my migraine symptoms started coming back the very next morning. So after five days of that I went back up to the higher dose I’d been on for 3 weeks and I went for ultrasounds of my legs and the arteries in my legs (two different tests). I also saw a rheumatologist and then a vascular surgeon because one of the ultrasounds came back showing that I might have an issue with an artery in my ankle or something? In the end (and this is from Monday of this week) both the rheumatologist and the vascular surgeon said this is Raynauds due to the medication. It’s been suggested I wean off the meds and try something else, although Raynauds is generally not dangerous just inconvenient and annoying. At the moment, though, the meds are helping me to some extent so I need to decide which is better, stay on with side effects or go off and feel like absolute shit while trying another med that may or may not work.

So for the moment, I’m holding on the current medication at the current dosage (MAV specialist wanted me at a slightly higher dose than I am now) until after I see the cardiologist tomorrow because the meds I’m taking could have (or be having) heart implications for me. Another reason I might need to consider switching to a different preventative.

I’m tired all the time, more from anxiety and stress than anything else. Hub is still taking care of so much, and I worry about him. We have someone coming in once a month to do a heavy cleaning of the house, but Hub tries to keep up with everything in between. I barely see my family, I don’t go to any gatherings because the noise and visual stimulation is too much. I don’t see or talk to any of the few friends that I have. I don’t crochet, I don’t read, I don’t use the computer. This is the first time I’ve been on the laptop since my last post in January. I mostly use my iPad and phone, and even then not that much and it does bother my eyes and head.

Meanwhile, I need to find a new neurologist because the MAV specialist said if I’m going to change medications he doesn’t want to deal with it. Which was disappointing and frustrating. He said if his first line of medications doesn’t work with a patient, he then suggests they have their primary doctor manage other medication trials…but I don’t want migraines managed by a primary. And plus, I have to find a new primary because during this round of *shit* hitting the fan (blue fingers, blue toes, was it a blood clot or peripheral artery disease or…) she ordered two tests but MIS-ordered one of them. So I had to go to two different testing locations when I could have gone to one, and I had to pay for two tests when it should have been done in one. AND THEN when one of the tests came back she sent me a note in my portal saying everything looked fine, only I pointed out that the radiologist’s note said one of the results noted “diffuse disease.” And she wrote back, “Oh, I must have been looking at the wrong test results, thanks for pointing that out” and then she sent me referrals for the rheumy and vascular doctor. WTF. How do I trust anything she’s done or said over the 12 years I’ve been going to her? She isn’t reading the reports or paying attention to the results or whose test is whose? W.T.F. So yeah now I gotta find a new primary and start all over again with my complicated medical history. Sigh.

I hope the meds continue to make me feel less awful and that I can keep taking them. Meanwhile, I muddle along. Maybe next week I’ll be able to crochet more, or do more with the dogs, or read a few pages in a book. Or maybe I’ll feel better for a day or two. I seriously don’t even know what to hope for at this point.

 

Calgon take me away

Preface: This blog is about me and my experience/feelings with regards to medications. It is not a judgement on or valuation of what anyone else does/feels with regards to their anxiety, depression, pain, insomnia, allergies…etc.

---

Monday morning I went to physical therapy for my shoulder. I’ve been going for close on to six weeks I think, but only once a week because they are so booked they can’t usually fit me in twice a week. This past Monday, I actually cried during the appointment because the pain was a) so bad and b) so frustrating. For the first three weeks or so, I was doing my exercises religiously at home. Then the therapist started adding in more and more exercises–without giving them to me in written or picture form–and I got overwhelmed and lost. I still try to do stuff daily, but it’s not everything I should be doing. Even so, I’m continuing to progress with my flexibility, but the pain continues. And I guess because the therapist is trying to push my range, the pain is…bad.

I am extremely sensitive to medications, and have been for most of my adult life. I don’t even take OTC pain killers like ibuprofin or acetaminophen or tylenol because they either screw up my stomach or they don’t work. I will take anti-biotics when prescribed, but I hate the experience and it’s mentally very challenging for me.

So last night I was in the shower and thinking about how much my shoulder still hurt, how sore it was, and I was under the hot spray of water and thinking…if I only took pain killers this would be a lot easier. And I knew…I KNEW part of the reason I don’t take pain killers or cold medication or antihistamines or sleeping pills or any other medication is that I would cause a bigger issue for myself. It’s NO LIE that I have medication sensitivities…I very much do have them. But maybe if I searched hard enough I could find things that work for me. I don’t do this…and here’s why.

About fifteen years ago I had a bad cold…a sore throat that was horrendously painful. I started using these OTC throat drops that had some kind of liquid medication in the middle. It was probably Haul’s brand, probably cherry flavored. I used them constantly in the beginning and they seemed to help. Then my throat started getting better but I literally got addicted to them and was continuing to suck on them like they were candy. I had to use them. I was addicted and I had to have one in my mouth almost all the time. It was vaguely terrifying when I finally realized what was happening (maybe like 3-4 weeks later). I quit them cold turkey and made Hub take the bag to work with him to throw away. I knew if they were in the trash in my house, I would dig them out and eat them. I don’t buy those kind of lozenges anymore, though in the last two or three years I have started buying honey-drops for sore throats.

I don’t do drugs and I don’t drink any alcohol and I don’t smoke. I never did any of those things. I feel like if I did or if I started using something like pain killers or anti-anxiety medication or sleeping pills, I would be using them constantly and for the wrong reason. I’d be in less pain, I’d probably have less anxiety, I might sleep more, but I’d also be zoned out and not living. I would just figure out the best way to shut myself off from everything and everyone in life by doping myself up on OTC or prescription medication. I would be gone, in every sense of the word. I’m not sure I’ve ever admitted this fear to anyone out loud, but in my heart I know that I’d use the medications to hide away. I’m not sure I’d be doing anything illegal or overdosing on the meds–or even overusing in any significant way–but I’d be using them in a way that would excuse me from life.

I feel like my anxiety over medications keeps me safe from all of this. Yes, I DID use some pain medication after my first surgery, but it was only a day or so (and so regimented!) and then I used tylenol. And then after a day or so I used nothing. The second surgery I didn’t use pain meds because I didn’t like the way they made me feel the first time, so I used tylenol as needed and I suffered through. I suffer through pain on a daily basis because I’m afraid of who I would become if I muted all the pain in my life…physical and mental.

Before I first got sick in 2001 (at 29yo), I’m not sure I ever really needed medications. Sure, I probably took cold meds on and off over the years, and never gave it another thought. Yes I did use Advil every month for cramps (which is how I ended up with stomach issues!) and probably occasionally for headaches. But after I got sick, everything changed, including who I really was. Who I really am.

The physical therapist said that I could go back to my Ortho doctor and ask to get a steroid injection to help with the pain as we continue with rehab, but I declined. I hate the pain I live with daily, and I hate the pain that reduces me to tears during PT, but the pain reminds me that I’m alive. I’m alive and I’m experiencing life.

This all sounds very fucked up. I guess I’m not surprised at that revelation.

 

Viral return (not)

Friday of Father’s day weekend, I was back in bed shortly after lunch. It was reminiscent of that time period starting in February and lasting through to May, when I was then diagnosed with a sinus infection. At the time I was diagnosed with the sinus infection, I began to wonder if the “down” period I’d been having–which was being blamed on a virus by my doctor, and grief by my therapist (and me)–was actually the result of the sinus infection. Shortly after the anti-biotics started kicking in, the fatigue started going away. I was not splayed out on the couch all the hours I was “awake”, and I wasn’t falling asleep in my food. So I came to the conclusion that it was the sinus infection knocking me out, and I went about my life.

But the 16th, it hit me just after lunch and I ended up going back to bed shortly after eating some soup. I had plans to go out with my brother and his new girlfriend (our first meeting with her) Saturday night, but the way I’d been feeling on Friday, I wasn’t sure I could make it. I spent most of Saturday in bed again, feeling exhausted but not sleeping. It was so frustrating. I was nauseated almost all the time, felt off-balance, weak, and just plain worn-out. I hauled myself out of bed to go out to dinner with Hub and my brother and his girlfriend, but basically felt like crap all evening. Sunday was Father’s day and we were supposed to go over to my father’s for a cookout. I stayed in bed most of the day with the hope that I would have enough energy to make it through the evening at Dad’s. I didn’t do much of anything once we were there, I ate very little (which was how I’d been eating since I started feeling shitty, because the nausea is so bad that everything looks and smells gross…), and we stayed only long enough to eat, chat a bit, and that was it.

Monday morning I made an appointment to see the doctor again, but instead of staying in bed, I tried to go back to my normal routine. All the times I’d been in bed, I wasn’t sleeping…I was just lying there thinking of how tired I was. It felt stupid, so I decided to just stay awake in my recliner and try to act as normal as possible. As the day went by, I decided that I needed to get back to my cardiologist. The extreme fatigue and nausea and weakness was enough to spur me to make an appointment with him, even though I doubted it was a heart issue. I didn’t want to wonder, and it’d been a year since I’d last seen him. I decided that there was no reason for me NOT to go see the cardio, so I made the appointment.

As it turned out, I had both appointments on the same day, one in the morning and one in the afternoon. I saw the cardio first, and even though there was a scheduling snaffu, they saw me anyway. The doctor did his regular exam, talked to me for a bit, reviewed my tests from my primary earlier in the year, and did an EKG. He said he saw nothing to suggest there was a heart issue, that my test and exam were both normal. But, he said, since I’d had the stress test last year, he suggested I go ahead and get an echo-cardiogram to round out the cardiac testing. So they set me up with an appointment for this week (tomorrow) at their other office, which had an opening sooner than the local office.

I went in to see my primary that afternoon. We talked about how I was feeling, then she did HER exam. She asked if I was getting the same *smell* as when the sinus infection was diagnosed last time and I said no. I don’t think I am, though sometimes I get the phantom idea of the smell… But since it’s not consistent like it was last time, I think I’m imagining it as the memory of what it was. Without any other options, my primary suggested it might be allergies. Her thought was to try allergy medications to see if it made me feel better, and then to consider seeing an allergist. Last time when she didn’t know what was going on, it was as virus. This time, allergies.

So I said THANKS, gathered myself and left the offices. I did make an appointment with an allergist recommended by my cousin, who is a pediatric allergist and whose husband is allergic to everything and loves his allergist. Sadly, they can’t see me until mid-August. So I have to decide what to do between now and then.

Although I am still tired, it’s not as all-consuming as it was that Fri-Sat-Sun, and I’m using a homeopathic nasal spray (with capsacin and eucalyptis) to try to keep my nasal passages open and draining. So if there is a potential for a sinus infection brewing, I’m at least keeping the sinuses draining instead of stagnant. It’s an interesting spray, with not as much burn as I’d expected. It does seem to keep my sinuses open, so that’s good.

Prior to all of this, I also saw my orthopedic doctor about my left shoulder. I can’t raise my arm above shoulder height, and moving it in certain directions is incredibly painful. He took an xray, did a physical, and pronounced me with an impingement. I gotta get in to see the physical therapist to start working on it. He said if PT doesn’t work, it’ll be a steroid shot. Ech. I haven’t made an appointment yet because I’ve been run-down with everything else.

July is going to be mobbed. I have my 2 year cancer check, which will include a CT scan after my visit with the gyn onc. I also have a trigger point appointment, I need to get my hair “fixed” for my cousin’s wedding, and…well, I’m going to see a psychic-medium about my Mom. And then my cousin’s wedding. Plus we need to find a dog-sitter for when we’re at the wedding. I’m not sure when I’m going to fit in PT. Ugh. Of course this arm-thing has been going on for several months, so it’s not like I don’t know how to deal with it…

Did I mention the wedding at the end of the month is a FORMAL wedding? At a local Four Seasons fancy-shmancy hotel. I had to find a formal gown (A GOWN), I had to find shoes (I hate shoes), and just tonight we went out so I could get the dress altered because it’s too long and I hate the sleeves. But I liked the rest of the dress and it was on sale so I bought it and just told the seamstress to hack off the sleeves.

AND I’ve been helping my father clean some stuff out of his house for donation. Which means I was also cleaning some stuff out of MY house for donation. Hub and I stopped tonight and dropped off a ton of sheets and blankets (and 2 twenty pound boxes of dog treats) at our local animal control/shelter.

I need a nap.

 

 

Bad bactrim bust

So here’s the history on my sinus infection and the antibiotics I was prescribed.

I’ve taken 8 days of bactrim, 2 pills a day. After the 2nd full day, I have been able to take the pills without having Hub sit with me for an hour. Today I took it after he left for work so I was home alone! I have four little shitty pills left in the container. In addition to all the stuff I’ve previously talked about–including HORRENDOUS heartburn/reflux–I’m now getting itchy. Mild but diffuse. My head, my arms, my back, my legs, my face, my hands, my ears…all little creepy crawly itchy spots. No rash, thank goodness, but itchy.

The heartburn has given me pain in my stomach in addition to chest-heartburn pain, throat burning, inflamed throat-feeling, and it has given me the GERD cough.

I called the doctor’s office twice, and both times I pushed the button to “speak to a staff member” and both times I literally let the phone ring for 3-4 minutes before hanging up. I left a message for my doctor in my online portal, but sometimes they don’t respond to that for a day or two. I ended up calling back and pressing the button for scheduling. The woman who answered said they are really busy (great excuse) but she took the message for me and forwarded it to my doctor’s office. She said either the doctor would call me back or her nurse would.

I do not want to take another pill. I’m concerned this is the beginning of an allergic reaction with hives and the whole schmear. As it is, it’s going to take 3-4 days for the medication to get out of my system…I could possibly still get hives or more itching during that time. The problem is, I don’t want to  have to start over with another antibiotic. Bleh. I’m crossing my fingers that the doctor says 8 days is enough for now and to see how I feel in a week or two.

The smell SEEMS to be abating somewhat, but it’s not GONE. I hope it gets gone because it’s still really irritating. I’m half concerned that I’m getting used to the smell and won’t be able to tell if it’s really gone or not.

SO the doctor’s nurse just called me back. She asked if I had a rash or hives with the itching and I said NO. She said that itching is a side effect of bactrim, and as long as there’s no hives or rash, I can try to finish the last four pills. She said that an actual allergic reaction would include hives or a rash, versus just itching. She recommended benedryl to help with the itching. I don’t take benedryl–or anything if I can help it–so I haven’t decided what to do yet. I haven’t had itching overnight, so I might try to take another AB dose tonight and see how it goes. I mean, I only have FOUR PILLS (two days) left, I don’t want to start all over with a new course of antibiotics if I don’t have to.

But maybe I’m going to ask them to put bactrim on my no-no list from here forward.

 

 

 

 

Bactrim blues

So I’ve taken six pills so far for what my doctor diagnosed as a sinus infection.  I wanted to make note of what has been happening with the bactrim, at least for my future reference. Here’s what my historical experience prepared me for:

Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.

I’m definitely getting a lot of heartburn/acid reflux. My appetite is nil and the nausea is there for sure. My stomach hurts almost all the time, but that could also be from the acid reflux/heartburn. What is also a bit distressing is that last night before dinner (after the 4th pill at 9:30am that morning), I had a really bad hot flush on my face and ear, and I had anxiety. I’m not sure if the anxiety came from the hot flush or from the ABs. So I took another pill this morning at about the same time as yesterday…and tonight the hot flush started again before dinner. I didn’t even wait this time, I just got a cold pack and put it on my face until I was pretty well frozen. I didn’t get the anxiety, but I also stopped the hot flush early on, so maybe I stopped the anxiety before it started.

There’s no discernible change in the smell issue, yet. I’ve been trying to use different essential oils to distract myself from the smell (I just realized I had some good oils downstairs I could use…brown sugar and vanilla!), but it doesn’t last long.

Last night we invited my father over for dinner since my brother (the one that lives with him) is out of town for several days. Then tonight we went out for burgers with him and my other brother. Tomorrow Dad’s going to the grocery store with us in the morning, basically because he’s tired of being stuck in the house alone. He and I talked about how hard it is to be alone in the house all the time (while his house-mate is out of town), and I told him how concerned I am about being alone when Hub goes away. I told him I might end up sleeping there at night and he said if I did then they would be able to help me with the dogs in the early morning hours. I said I’d let him know. I’ve been going out for walks every day and when I get to his house, I call him to tell him to send his dog into the yard with us…sometimes he comes out to chat at that point. It’s hard because I used to do this to go hang out with Mom…and it’s not as easy to find things to talk about with Dad all the time. But I’m trying t keep up with the walking outside, so if he wants to chat with me he’ll have the opportunity.

I’m really tired of feeling so crappy. I want to regain my energy. I want to move forward.