Got through

Got through yesterday.  I felt pretty bad, physically but did great emotionally.  My stomach was better too (so some support for the idea that the mirtazipine was a no go on account of unexpected stomach side effects), until I decided to slurp down too much soup all at once for dinner.  Yesterday was hot, hottest day we’ve had so far this season.  And my head was swimmy.  Dizzy, headachy, and the occasional blast of blue flickering flashes.  I think I spent the day with a mild migraine.

Well, I’ll take a mild migraine over a king sized freakout/meltdown.

Today, it’s therapy and primary care.

Tomorrow, my husband’s going out after work, so I’ll be alone all day and most of the evening.  That’ll be interesting.  If I’m feeling ok, I’ll try to go out.  Hard to plan to drive somewhere when you don’t know if you’re going to be too dizzy/migrainey though.  Once I have on migraine, the next is often right around the corner, especially in the summertime.  I have a friend who says he can come over for coffee Tuesday, so that’ll be a short interlude in an otherwise lonely day if I can’t get out.

This being physically sick was shitty enough.  Having the mental health stuff on top of it is just too much.

Dr. Potato head, or Tater Tot

Photoshopped pic of doctor made out of tater tots

My neurologist.

Ah, well that is one neurologist I will not be seeing again.  He has the bedside manner of a potato.

I saw my primary care later that day.  He mentioned something about autism.  “Oh speaking of autism, saw a new neurologist today…definitely on the spectrum.”  He could not interact WITH me at all.  Could talk TO, but not WITH.  At one point, when talking about visual symptoms, he said “those blue flashes aren’t migraine.  what does your eye doctor say about it?”  I say “well, I had an eye doctor who I saw when I started seeing star bursts around light points last summer, and I was going to follow up with him but he died.”  Tater Tot shook his head.  I said “What’s the head shake for?  He was really old!”  Oh yes, I did.

At least he didn’t come across like someone who is looking for a fight.  And he came across as so globally socially non-normal, that while I left there saying over and over to my husband “my GOD!  I mean, just….my GOD!”, I did not take it personally.

Primary care:  “Did he have anything to say about the migraine meds?” “Oh yeah.  He could talk to me just fine then, when he was delivering what was basically a lecture after he took my history. He even was able to call up his ‘smile subroutine’ at that point.”

So, Zomig for abortive med, he wanted to do verapamil for prophylaxis but that has bowel implications and my primary care was like “no!”  and he wants me to switch back to amitriptyline from nortriptyline.  I was to ask the GI doc about that, but she was like “hi/bye” during our phone check in this week.

Primary care is at the end of his rope here.  “Is there anyone you can see who knows about this shit?  I’ll take directions, I really will.”  Since I am showing a good number more and more severe autonomic dysfunction symptoms, primary care is sending me to the Best Itty-B.A.T.H. (i.e. “BI-BATH”) in Big Northeastern City.  BI-BATH is not in the mega-hospital network up here, but it is affiliated with Ye Olde Ivy League University Across the River and they have a “Center for Autonomic and Peripheral Nerve Disorders”.  I think it’s just one neurologist and a handful of post-docs, med students, and RAs, but hey whatever.  I’ll take it.  They did my tilt table test in 2010.  Primary care really wants me to go to Baltimore too, for the EDS.  “Ok but what is that going to do, I mean, I’m not saying no but if it’s just ‘yep, you have EDS’ (again), then what?  Do these people actually talk to each other, talk to you?”

new neuro

My old neurologist left his practice in a huff (he couldn’t even wait a minute and a huff) last Fall (post “run away“).  He sent a kind of rambly letter which left me very little time to get in there and get my record (they weren’t mailing because that would be expensive).  It was a very busy time of year for me at work, so while each day or two I’d remember after getting home from work “crap, I need to call that guy tomorrow and get my record!”, by the next morning I’d forget….or I’d get so blisteringly busy at work that by the time I called (4:30) they were gone for the day.

The recent gastroparesis symptoms have made it clear that I need a different migraine med.  The symptoms get markedly worse after I’ve had a migraine and after I’ve taken the tizanidine this guy prescribed for my (supposedly migraine related) neck pain.  I am not sure how much of the GP- exacerbation is due to the migraine and how much is due to the fioricet I take for them, I think a sizable amount.  Time to look into something else, especially since the fioricet really doesn’t help a ton anyhow.  I do not love the idea of seeing a new doc right now, and filling out the questionnaire for things like “how many days in the last 3 months did you limit your (work, housework, leisure) activities because of a headache?” makes me want to, well scream kind of.  Because for someone like me (and like most of you reading this), (a) I have no fricking social life right now and migraine is only one part of that (b) I get up and going with a BP of 80s over 40s.  Unless I can’t see and am literally so dizzy I can’t walk, I get up and I do things if things need doing.  So unless I am having a massive aura-filled migraine, I do not limit any further than I already do.  But I have a lot of limits.  So how the hell do I fill out this survey, which is not made for someone like this?

Eh.  I guess I’ll leave it blank and ask him.  I kept a headache journal by iPhone app for about a week.  6 days of headaches, several per day on some days.  But how much of that is from low blood pressure, dehydration, over-exertion?

I suspect I am overthinking this.  One thing my former neurologist said to me was “you’re a minimizer.  you minimize your symptoms”.  I’d never have classified myself as that but I thought about how I probably come across in my day to day and I think that this is correct, sort of.  I don’t present to a doc’s office saying “oh my god my migraines are destroying my life!” partly because well so many other things are at this point, and partly because I don’t know which symptom is a migraine symptom and which headache is a migraine headache.  So I’m not a minimizer as much as I am a contextualizer.  If people aren’t willing to consider my context (how many times did you visit the ER in the last three months because of a headache?”  none, because I’ve been in a lot of ERs, they tend to be unhelpful, expensive, and sometimes downright horrible), then yes, I will come across as under-reporting or minimizing.  The same thing happens with pain.  Pain scale, one to 10.  I have stopped contextualizing on this, because I find that it is not how they expect you to report.  If I report pain on MY pain scale, it’d hardly ever get over 4.  But, after being around people who are reporting pain at a 9 and are not fainting, sweating, speaking through gritted teeth, and are able to breath normally, I realized that MY pain scale is perhaps a bit skewed.  Mine is like “ok, if 10 is passing out…” and I don’t think that this is what most people report on, because most of them do not have intimate, recent, recurring knowledge of lots of pain.

In other news, I spoke to my boss yesterday about not being happy about how my accommodation request is being handled, and about communication with her.  That was NOT an easy conversation to have and I am really proud of myself for managing to have it.  Also went for an appointment for a referral for mental health/therapy, which went pretty well.  And later today, I see my primary care, who is going to freak the hell out since I’ve lost another three pounds since I saw him last week.

Blending in

Got a new blender, a Vitamix.  And just in time since on Thursday, the bad GP symptoms came raging back and have plagued me since then.  What prompted that?  I really don’t know.  Here’s a list of things that were different this week:

  • Massive migraine Monday.
  • Meds for massive migraine.
  • Disrupted routine:  Wednesday through Friday I had to attend a local conference.  Those were three days of not being able to eat more than a little thing of lactose free pudding during the day, not getting enough fluids, and having to take meds for the pain I incurred from hauling the departmental laptop around (oh and walking a mile for a lunch that never happened on Wednesday, a mile in the warm, humid sun – thank you coworkers who could not make up your damned minds and then after we’d gotten so far afield from the conference site, decided to just go to a packed Panera)  
  • Rice milk, which I drank on Wednesday after running out of Lactaid.  Haven’t had the rice milk in while since it’s nutritionally crap and I’m trying to make the most out of what I eat right now.
  • Getting really upset (Monday from day derailed by Migraine; Wednesday from…well, all of that.
  • All of the above.
  • None of the above.

Because it could be something else. I’m tracking this stuff, trying to figure it out.

In the meantime, I have an awesome blender, courtesy of my husband, who loves little more than researching and buying gadgets, kitchen included.  I think this thing could pulp mahogany.  This weekend, I finally made carrot soup that doesn’t have carrot chunks and threads in it, veggie chunks and threads = not good for the slow of stomach/ gut.  I made blended sweet potato (oh sweet potato, how I’ve missed you!)  And I made blended (lean) meats, looks gross, tastes yummy.

All things need to be well cooked prior to blending (meat obviously, but also the veg) since raw or undercooked veggies are not good with the slowness.  There’s a real danger than the vegetable fibers will stick around, accumulate, and form a plug of sorts.  Sounds awful, right?  So thank god for a blender that can turn the vegetables into a liquid so smooth it runs through my finest sieve!  Boy, what it does to a smoothie is amazing.  It’s a pricey blender.  but you know what else is pricey?  Missing work, ER trips, doctors’ visits….and then there’s the incalculable value of just not feeling like total hell.  So we found it at a (relatively) decent price and we sprung for it.  Given that I can’t eat much more than pudding consistency, I think it’s worth it.

Here’s hoping that keeping up the calories will help.  I know not having enough hurts.

keeping cool

It’s hot here in the suburbs of Big Old Historic Northeastern City.  Bug sightings are common now and I’m reacting to every stray hair or unexpected touch on my skin with alarm….it only takes seeing one of those nasty centipedes to put me into a heightened bug paranoid state….I’ve seen three in the last week and a half, including one doing the backstroke in the bathroom sink!  The cat has taken to spending her evenings in the kitchen, parking her furry butt in front of the kitchen sink (properly, in front of the cabinet below the sink). It gives her a view of the back door, bathroom, and light colored kitchen floor, where she can chase down and gobble up any of these little nasties that try to scramble across the floor.  I watched her track and nail a mosquito a few nights ago.  She got much praise.

The warm weather brings not just bugs but migraines and a return to the super low blood pressures.  Yesterday morning my BP was 80/56.  Evening wasn’t much better, managed to get it up to 85/59.  The brain does not work well with such low blood pressure, so yesterday was a series of backtracking to retrieve things, redoings, and all around thwartiness.

I bought some more popsicle molds.  I had another set that I got a few years ago but they got used for coffee (mmmmmm) popsicles and they aren’t going to be much use for anything but that now.  These are for fruity creamy popsicles.  Very excited.  Especially since it is impossible to cook in this heat, so it’ll be nice to have some snacks.  Speaking of smoothies, managed to grab a few pictures.

Both super delicious and nice warm weather food. I’m still considering trying the coconut milk ice cream again.  I have pause for two reasons.  One:  high fat content, and that’s not good for gastric emptying.  Two:  I did try coconut milk ice cream treats last summer, they were these chocolate and nut coated things.  I think I was allergic to something in them, so I didn’t eat any more after the first try.  I’m not sure if what I reacted to was in the ice cream or in the coating.  For now, I’m doing ok with my blended low fat lactaid milk and ice.

photo of glass with a shake.

Strawberry banana

photo of glass with shake and straw.

Ginger peach

rescue me

When I was a kid, one of our cats got stuck in a tree.  Several cats had climbed this particular tree but had found their ways back down promptly.  Not this one.  She went up it and then stayed.  The tree had a strange placement, really my whole back yard was strange.  Our yard backed up onto a massive rock formation.  It wasn’t too wide behind our house.  From east to west, it created a relatively flat shelf full of thorny bushes and small trees that went back probably 50 yards or so.  But it was high and long…it ran about a mile to the south, expanding in width as it got further from my house to fill the area between houses and highway.  As the rock bordered our yard, it eased from a steeply dropping rough mound, which rose to the third floor of our house, to a more gradual set of slopes at the north west corner of our house.  The tree grew where those slopes met the ground in piles of large rocks covered in moss and brambles.

The tree wasn’t far from the side of my house where my bedroom was, so at night we could hear the cat crying.  And in the daytime my siblings and I, and the neighborhood kids, would all try to climb up the nearest highest rocks and reach up to coax the cat down.  I distinctly recall smearing most of a can of nine lives cat food onto the rough bark of the tree…no use.  The cat stayed stuck for days.   Why did she go up?  We asked ourselves, each other, my parents.  No good answer.  Why did any cat go up?  It’s what cats do.  Go up trees.  Run around like fools.  Chase squirrels, birds, and other small wildlife that flourished in the woods that grew on and around the rocks.

Another one of our cats decided to come along with us one day during an exploration of the woods.  We were a little older then and ventured quite a bit further.  We packed food and punch.  It was hot out.  We had moved through the wooded areas and broken into what was known as “the crushes”, a sort of gravelly expanse with not a tree in sight.  It was summer, the sun was out, and it was hot.  The cat kept up for a while, but after an hour or so, she started panting.  Shit.  Who’s gonna take the cat back?  No one wanted to be the one but no one wanted to leave her there so near the highway.

Both stories resolved.  Both cats were saved.  The one who got stuck in the tree continued to do not terribly bright things and eventually got lost because she had taken a nap in my dad’s car one summer day (the window was open) then dashed out as soon as he stopped several miles from our house.  The other was a hell of a lot smarter.  She lived a long, happy life of chasing and catching snakes and doing adorable things for nibbles of people food.  She eventually died of natural causes when I was living out in The Great Midwest as a young adult.

You don’t think of cats as needing rescuing.  They’re very independent. They’re little predators even.  But sometimes they do things that get them stuck.

And so it is with 41 year olds with chronic illnesses, it seems.  I hate having to be rescued.  I can honestly say, with the exception of the time I dropped out of college and my parents had to come help me move back home, I have not had to be rescued since I was a little kid.  Actually, now that I think about it, even the times when I properly needed it, like passing out, not one person has done a good job of taking charge.

  • Felt bad at lunch and told the teacher.  She left me alone in the classroom rather than sending me down for lunch.  I started feeling really bad and chose to walk myself to the nurse’s office.  I passed out and came to alone in the hallway.  I was 8.  

    illustration of placing person in recovery position

    Notice how no one is dragging the afflicted person around by his arms…

  • Felt bad on a field trip into Big Historic City in 6th grade.  Told a teacher.  Was told, basically, to just suck it up.  I passed out and came to alone on a bed in the recreated house of a famous US patriot.  
  • Felt bad on a flight to Europe in 11th grade.  Told my brother, who was embarrassed and whose single gesture of “assistance” was to throw the barf bag into my lap.  Passed out.  Came to.  No help.
  • Felt bad at lunch in 11th grade.  Told a friend, who took me to a lunch monitor, my guidance counselor.  Was told to suck it up again, lunch was almost over and I could go to the nurse then.  Passed out and was dragged through the entire lunch room by the guidance counselor and the friend.  
  • Passed out numerous times in numerous bathrooms throughout adolescence and early 20.  Alone, came to alone.  Took care of myself.  
  • Got horribly sick at college, retching and cramping, feeling really faint.  Campus emergency response came and I had to explain that the strange blood pressure readings they were getting were symptomatic of shock and insist that they call a real EMS.  Then had to convince real EMS that my insurance would pay to transport me to the less horrible local hospital, this convincing included calling my dad while in bed, drenched in sweat, not able to see because the graying of my vision had reached such a severe point and I could barely hear for the roaring in my ears.  Got it straightened out, onto the stretcher and started down the stairs, then passed out.
  • Passed out while out for drinks with a friend from work. A nurse.  She left me at the table alone while she went to call 911.  Came to still in a chair with a law student trying to check my pulse with his thumb.  Made my way to the bathroom where I refused to come out of the stall.  
  • Passed out at home on the toilet when I was married to my ex the doctor.  “Oh you go stiff when you pass out” he told me.  “I practically had to break your legs to get you out of there.”  I don’t count this as particularly helpful, although I was grateful that he at least knew an unconscious, upright person is a bad thing.  My legs god damned hurt for weeks.  
  • Passed out on my ex the diabetic.  Started feeling faint, called for help – was ignored.  Staggered into the bedroom then promptly fell, hit my head, and lost consciousness.  I had to insist he take me to the ER after I came around, and I kept asking why my arms hurt so much.  It wasn’t until much later that the idiot admitted he had yanked me up and onto the bed by my arms.  
  • Got a sudden onset migraine at my old job that reached monster proportions.  I felt shaky and like I was going to pass out, I couldn’t see much at all, and I was sooooo nauseous.  I couldn’t hide how sick I was when I told my boss I had to go, and so she decided to “help”.  While my boss and other staff stood around me in the lobby trying to decide if someone would drive me to the ER or just give me the damned taxi number like I had asked for, the vomiting began.  So I dropped to my knees, grabbed the nearest trash can, took out the bag inside and reached in for the extra empty bags I knew the custodial staff put at the bottom of the can, then rocked back up into the chair I had been hunched over in, bag in hand.  Everyone was just staring like “d’uh?”  Yeah, thanks guys.  The staring and doing nothing to assist is really super helpful.

I don’t consider any of those times to be situations where I was rescued, like really rescued.  Like taken care of without stupid arguments, and stupid (sometimes dangerous) behavior.  Or taken care of with cool cloths and even minimal first aid including appropriate body positioning.

Since getting sick(er) in my 30s though, I’ve needed rescuing.  Like the cat, I get places then find I cannot get myself out of them.  So mostly, I’ve just stopped climbing the trees.

Sometimes I do though.  Last night, I did. I thought, I’m feeling  a bit better. And it’s not too cold out, it’s not raining.  My husband’s done so much for me the last month, I want to do something nice for him.  I’ll pick up food at the excellent middle eastern place that’s only four blocks from work.

We made plans, tentative based on how I was feeling.  But I was feeling ok.  So I went.  As I was ordering, I noticed that I couldn’t see the server’s face.  Shit.  Shit shit shit.  Surreptitiously, I covered first one eye, then the next.  Is it?  Yes, a little faceted sparkle in my lower right visual field of my right eye.  As I moved down the Subway-like food ordering line – giving instructions and answering questions “yes, tahini.  no hot sauce.  no tomato,” – it grew.  By the time I got to the register, the lateral border of the entire right visual field of my right eye was throbbing in a shimmering warning of the pain to come.  Thank god at least there is this count down.  It does help, well, sort of.  It’s hard to walk when your vision’s doing this.  And there’s the nausea.  And the talking.  I drop word endings or put the wrong ones on.  So my verbs come out all foreign caveman-like, “he drive now..then we walks later!”

I began texting my husband, which in case you haven’t guessed, is not easy when your vision is set on scramble. I guess it’s time to put in some short cut text for “I have a migraine and will be waiting inside.  Please call when you pull up”.  I don’t know how he figured out that what I typed was meant to be “washington street”.  I looked at it later and while it did start with “w”, it all went to shit after that.  My knight in deisel hybrid sped down the roads of Big Ass (historic) City, nearly knocking pedestrians out of cross walks and probably pissing off more than a few taxis, and called me to let me know he was there.  I was testy.  He seemed to want to talk me to him over the phone but I cut him off.  “Ok, so I have to hang up now,” I said in a tone that I hate “because I don’t actually have much vision in my right eye and I have to stand up, put on my coat, pick up my bag, and get the food and I can’t do all that and talk on the phone like this”.  I’m no good at being rescued.  So no more trees for a while for this cat.

EBS

Enraged bowel syndrome.  Because mine is more than “irritable”.  It’s psychotic.

I spent most of yesterday hunched over and in pain with chills, nausea, and a massive inability to go.  Yes, a big change for me.  But not being able to “go” does not mean my gut didn’t want to go.  Oh it wanted to, but it just couldn’t get it together.  Times like this, I feel very much like what is happening is a lack of coordination.  It would fit with the rest of me, my overt and external motor skills leave a lot to be desired.  I walk into things, I have days where I can’t pick something up without knocking it about like a deranged, drunk juggler first.  So why should my gut be any different?  Why shouldn’t it sometimes just be like “whup, ooops, woah!”

I am exhausted from this.  Exhausted short term, I feel like I was in battle yesterday, I am so tired and achy from the muscle tension that comes with all that pain (I did try to relax, I’m not bad at putting the pain somewhere else for short periods, but only short periods, and colicky pain always does me in because you ride a wave, get past it, then lose your focus and when the next one comes you’re not ready for it).  Exhausted long term, as in so fed up with the evil nasty ways of my gut.

I believe today will be a low food day.  I’m having a lot of those.

So what set this off?  My money’s on migraine.  Migraines, and/or migraine meds, tend to give me stasis symptoms in my GI track.  The whole thing.  Nausea and indigestion up top, bloating and constipation down below.  Migraines and stress are the only things that will lock up my usually far too quick gut in a gridlock of pain.  So migraines last week from the whacky weather, hence migraine meds most days last week, plus some gut-meds since I had to be up and at meetings early a few days.  Then some stress because a young co-worker got bent out of shape by my manner (someone who’s very, er, sensitive…I’m not insensitive but I’m finding that I just don’t mix well with people who are femmy and insecure in a work situation – I’d like to work on that but truly, I have no idea where to start.  I think it would require a complete personality overhaul….).  And that’s that.  I tried drinking lots of water – all the meds I take are super drying – but I know there were a few days when I fell short.  So add that to the list of precipitating causes.  I don’t know how I didn’t break my teeth off from all the jaw clenching and tooth grinding I know I know I was doing, which is only going to add to the muscle tension in my face, head, and neck, which puts me in line for more migraines.

What a rotten cycle.

Husband was, as usual, amazing.  He does have the unfortunately tendency to get very very quiet when I feel that bad.  It’s not a terrible thing, I mean, it’s not like I’m up for conversations.  Grunting is about the most vocalization I can muster in those situations.  However, I wouldn’t mind an occasional word of encouragement.  Boy, I don’t ask for much, do I?  The word of encouragement is more so I know he’s not freaking out inside.  He’s a black box when I get acutely ill and when I have the clarity of mind to do so, I worry that the silence is fear.  And I don’t like unaddressed fear, I’ve lost partners to that before.  But, last night was not the time to talk about that.  We will later, when I’m more than a day past the bad and it’s not as acute a memory.

migrainous? they don’t even know us!

Ba-dum-dum.

Migraines are like a bad joke.  Have five days off of work?  How about a migraine?  Feeling better and  thinking you’ve turned a corner on the health stuff?  Boom, have a migraine!

I blame the massive weather shift that brought a 30 degree temperature drop, high winds, and (the all important) pressure shifts.  Sitting in my living room with the lights dimmed, sunglasses on, and my phone’s display set to the lowest brightness I can get, I found myself looking up weather and migraine.  I found the most absurd “article” on it at the Mayo Clinic.  Normally, I like their patient info pages.  They’re better than Web MD, for example.  But they do fall short here and there.  E.g., if you look up “blood pressure” and select the Mayo link that says in the search results “Blood pressure chart: What your reading means – MayoClinic.com – blood pressure chart can help you understand what your blood pressure reading means.” you are taken to a page that gives the following information:

Here’s a look at the four blood pressure categories and what they mean for you. If your readings fall into two different categories, your correct blood pressure category is the higher category. For example, if your blood pressure reading is 125/95 millimeters of mercury (mm Hg), you have stage 1 hypertension.

Top number (systolic) in mm Hg   Bottom number (diastolic) in mm Hg Your category* What to do**
Below 120 and Below 80 Normal blood pressure Maintain or adopt a healthy lifestyle.
120-139 or 80-89 Prehypertension Maintain or adopt a healthy lifestyle.
140-159 or 90-99 Stage 1 hypertension Maintain or adopt a healthy lifestyle. If blood pressure goal isn’t reached in about six months, talk to your doctor about taking one or more medications.
160 or more or 100 or more Stage 2 hypertension Maintain or adopt a healthy lifestyle. Talk to your doctor about taking more than one medication.

Can anyone tell me what’s wrong with this picture?  A blood pressure of 80/46 is apparently normal and you should maintain the healthy lifestyle that you currently have.  Yep.  No need to worry that you might fall down or pass out.  You’re fine!  Because you’re not hypertensive!  Of course, when you look around a little more, you’ll see that although the page is titled “Blood pressure chart: what your reading means”, there is a superordinate heading that reads “High blood pressure (hypertension)”  When you search for “low blood pressure” on the Mayo site, you don’t get a chart with ranges or “what to do”.  Nope.  You get a front page that tells you that “In severe cases, low blood pressure can be life-threatening.” but then goes on to tepidly describe that “blood pressure varies from person to person, a blood pressure reading of 90…or less systolic blood pressure…or 60 mm Hg or less diastolic blood pressure…is generally considered low blood pressure.”

This is a lot like what happens when you look up BMI on the web.  Even reputable sites have a skew towards discussions of obesity and high BMI.  If you’re underweight, well, apparently you can go fuck yourself.  There are two categories above normal but one below.  Apparently there is no difference between being a little underweight and being a walking skeleton with a host of serious health risks.

I should not have been surprised to see that their page titled “Migraines:  are they triggered by weather changes?” was so bad that it made me laugh.  Here was the part that I just laughed out loud at, emphasis added by me.
If you feel your migraines are triggered by weather, you may be understandably frustrated. After all, you can’t change the weather. However, you can learn which weather changes start a migraine and take steps to lessen their effects:

  • Keep a headache diary, listing each migraine, when it happened, how long it lasted and what could have caused it. This can help you determine if you have specific weather triggers.
  • Monitor weather changes and avoid triggers if at all possible. For example, stay indoors during very cold or windy weather if these factors appear to trigger your migraines.
  • Take your migraine medication at the first sign of a migraine.
  • Make healthy lifestyle choices — eat healthy foods, exercise regularly, get enough sleep and keep your stress under control. These factors can help reduce the number and severity of your migraines.

 

I was indoors all damned day Monday, and hey guess what?  It found me anyhow!  There’s really fuckall you can do about migraines triggered by pressure changes.  Truly, not a damned thing, other than up your prophylactic meds, try like hell to avoid any other triggers that are within your control, and clear your schedule.  If I had to write that, here’s what I’d write.

If your migraines seem to be worse or occur more frequently during certain weather, here are some you can steps to take to make sure you don’t drive off a cliff, get horribly and embarrassingly ill at work or in public, fall over and hurt yourself, or vomit on someone:

  • Keep a headache diary, listing your migraine symptoms and how you felt in the 12 hours preceding it.  This will make you feel like a hypochondriac but it can help.  It will help you to identify “prodromal symptoms” – i.e. early warning signs that a migraine is coming on and which you can then use as a signal to slow down, get someplace safe, dark, and quiet, and medicate if necessary.  It can also help you to figure out if your migraines have any rhyme or reason at all or if they just take you at any old time and fuck up your life.  
  • Monitor weather changes and plan accordingly.  If you find that severe temperature exposure is a trigger, try to stay in a temperature controlled environment as much as possible.  Your friends and associates will think you’re a pussy, but tough shit.  It’s your head and body, not theirs.  If you find that pressure changes trigger migraines, you’re just screwed unless you have access to a hyperbaric chamber.  Stay home and medicate.  
  • Take your migraine medication at the first sign of a migraine, but if you get migraines too often, a smarty pants doctor  will tell you that your medication use is triggering your headaches through rebound.  Ha ha!  Joke’s on you.  
  • Make healthy lifestyle choices.  They may not help if you have chronic daily headache, but at least you’ll look great!  Also, when you see that sanctimonious, smarty pants doctor who thinks that all you need is a can do attitude to overcome your chronic health problems, you will be able to tell him that you eat healthy foods, exercise even when you’re dizzy and pukey, take ambien to fall asleep when your migraine comes with insomnia, and live a pampered life of luxury that includes being unemployed, childless, and surreptitiously medicating your family and friends with mood stabilizers to keep them sane and stress free.  Congratulations.  You may still have headaches and other migraine symptoms but hey, gold star for effort!

Do I sound bitter?  I guess it’s three days of migraine.  Sunday, Monday, and yes, Tuesday at work a big fat migraine.

hijacking brunch

I wrote about my little brother’s invitation to brunch.  As it neared, I checked out the restaurant he had chosen.  After we passed on going last weekend, he wrote to me and my husband saying “Ok, next Sunday” and declared that we’d be going to the one with the “FABULOUS” menu.  Here’s what I discovered as a result of my research, between Yelp and a work friend of my husband who has been to the chosen restaurant because it is near where he and his wife live.

  • This place is a favorite for drunk/morning after university students.  Smart students, given where it is, but studenty nonetheless.  
  • Expect to wait in line for over an hour unless you can manage to be there promptly at 9:00 AM (and I don’t eat at 9:00 AM).
  • Waiting in line means standing in line, there is no space for sitting and waiting.  
  • The waitstaff are hipsters and can be a mixed bag in terms of civility and competence.  
  • The bathroom is in the basement, at the bottom of some sketchy stairs, and is often gross (huge thank you to the Yelp reviewer who mentioned this).

This all added up to a big fat no for me.   A recipe for passing out is prolonged standing and waiting to be seated at a restaurant while smelling and thinking about food for my first meal of the day or arriving so early that eating will set off gut cramps and I will have to hobble down the stairs to the gross basement bathroom where I may end up on the gross floor of said gross bathroom, semi-conscious.  blood orange mimosa

I began trying to contact my brother to discuss changing our plans for brunch.  I tried to text and then eventually call him.  I started out mild, with emojis of pandas and guns (that one did get his prompt reply, quoting Girls, “What does that even MEAN?!”) but after sending me random emojis back for about an hour, he went on cell and email silence.

Nothing out of him after Friday.  Saturday night, my husband and I researched other brunch places in Big City nextdoor and found a nice one in a rather recently gentrified part of town where little brother likes to hang out (brownstones, dog parks, classy barber shops offering “hot lather shaves”, and  if you haven’t guessed yet, gay friendly).  They took reservations for brunch (i.e. no line) and so boom, I reserved.  And sent little brother an email/text invite saying “For various reasons, I have hijacked brunch.  We are going to a grown up restaurant for brunch in [the Gay End] at 1:30 PM.  I hope that works!”

Thankfully, it did.  A little last minute wrangling for plans, and little brother showed up a little late, full of high stressy energy, and immediately ordered the blood orange mimosa (oh yes).  Work’s been tough for him.  I worry when things get like this for him.  His health is tenuously good right now, but can go so bad so fast.  Little brother was happy with the choice, although he did explain that the fabulous menu place was full of grad students more than undergrad.  “They’re still dirty and unmannered” I declared, drinking my second cup of delicious, grown up restaurant coffee and using my cloth napkin.  Oh and the restroom at Gay End grown up restaurant?  Lovely.  Just lovely.  Single unit, clean, not full of overpowering chemical air “fresheners”, nice music.

It turned out this change of venue was extra good for me since the massive weather change we are having this weekend kicked off a migraine.  I was ok through brunch, but took a fioricet with my first coffee there since I had that crinkly feeling to my perception that is one of the more subtle migraine prodrome symptoms.  By the time we got home, I was nauseous, tippy, everything was too bright, too loud, and then the pain started.  I don’t always get an actual headache with my migraines.  Yesterday I did.  Lucky me.

barometric pressure and temp Jan 14 to 21

(change (weather)) + (lack of(sleep)) = migraine

I spent about an hour in bed, then made my way to the couch, where my husband and I sat watching a bad Star Trek-athon.  I recall mentioning to him on the way home as the migraine become unmistakably present that had we gone to the studenty place with the fabulous menu, the migraine would have been cresting just as we were eating, and being really thankful that I took the bull by the horns and hijacked brunch.

Friend time

I had a little time with an old friend yesterday.  She was up for a conference that my office was hosting, came up the night before and left in the evening afterwards.  It was good to see her.  There are so many things that she didn’t know about.  “Why didn’t I know you had a thyroid cancer scare?”  I thought she had, but I guess because I hadn’t thought of it as a “cancer scare” and more as another possible explanation for my symptoms that didn’t pan out.  I don’t tend to share those widely I guess.  I do on here, that’s different.  It’s an anonymous blog.  I feel safer sharing here, even with a low readership.  Maybe because of it.

Her being here threw off my routine a little, and I hadn’t been getting good sleep this week anyhow.  It’s been off as a baseline, then this weekend, we had inlaws who made plans to go to a ridiculously late show in Big City Nextdoor.   I didn’t join them in the ridiculously late plans (and did take a perverse pleasure in seeing inlaw who had made these plans flagging at 8:00 PM and saying “My god, what was I thinking buying tickets to the 10:00 PM show?!”) but I did end up staying up til they got home.  I knew I’d just get woken up when they got in even if I had managed to fall asleep.  So my schedule’s way off.  And it’s been unseasonably warm.  Those two together are enough to provoke migraine, which is what I had yesterday pre-conference.  Oh and the conference room was overheated.  So I was a bit of a mess.

I am thrilled that she was here, but I’m also a little thrilled that my home is now guest free for a while.  I’d like to get back on my schedule, if for no reason other than that it’s my busy time at work now that the semester is starting. I need to be sleeping (or at least trying) at a normal time and getting up and going at a normal time.  I hope my body falls in line.  We’re planning to visit again in April, on a weekend so it’s not in the middle of everything.  Looking forward to it.