Sad today

I didn’t wake up with racing thoughts today, but I woke up sad.  I cried in bed several times before finally getting up, asking my husband to hold me to comfort me some through it.

It’s been a really tough couple of months, and the return of the anxiety has been hard to take.

I got through yesterday ok though, I managed to not take any ativan even though I woke up with nausea.  It resolved as the morning went on.

Today, I’m sort of on the edge of anxiety, I can feel it tugging at me in the background.  I know if I had something to do today, something I could do and that was more engaging than some solitary pursuit, I would feel better (emotionally) about the day and have some sort of hope that I won’t be spend the day alone fighting bleak thoughts and fear.  My stomach’s not too upset this AM, but I feel weak, dizzy, and my vision is spotty even just sitting up.  I’m sure my BP is way down.  I don’t even want to check it.  Too depressing.

My GI doctor called back yesterday after a third call.  She wants to do a Ph study and an esophageal manometry test. I explained how the last esophageal manometry test went when I was a teen…i.e. the doctor couldn’t get the probe down my nose because it’s too narrow up in there, so he ended up putting it down my mouth.  I got the distinct impression from my current GI doctor that dropping the probe down my mouth would not be an option.  “We’ll try it…” down the nose, was her comment.  Oh that and take a (whole) ativan before I come in for the procedure.  Um….okayyyyy.  Obviously she doesn’t get that it’s not just a matter of upset, it’s a matter of anatomy (which leads to pain, which leads to upset).

Still beating my head against the wall with trying to get in to a new GI doctor.  Still calling every morning and getting the news that there are no cancellations.  I wonder if I should call later in the day?

A friend is supposed to come over later in the AM for coffee/cards.  I hope that goes ok, I hope I stay well enough to do it.  I really could use the company and distraction.

I was planning on starting/trying the evening primrose oil and flaxseed oil today. I got them Monday to try to help supplement my way out of the essential fatty acid deficiency my labs showed back in June (and that was only one week into the starvation diet I’ve largely been on since then).  I worry about trying them…side effects include upset stomach, abdominal pain, nausea, and diarrhea.  So basically, more of what I already have.  Errrrg.

Stopping Lyrica

Last night, I did not take the Lyrica.  I had been planning on doing that anyhow, but my GI doctor finally called me back late yesterday afternoon.  We discussed it.  I think the most convincing thing for her was the constipation the lyrica was causing.  Yeah, never mind the headaches, and daytime fatigue, nausea, and pre-syncope.

So I’m off that.  She asked me if I was adhering to a gastroparesis friendly diet.  Um, I had been.  Now I’m on a (low fat, low residue) liquid only diet, and I can barely tolerate that.  I sometimes wonder if she has a bit of early onset dementia, or maybe if she’s an alcoholic.  Or just can’t be bothered to chart, so that when she calls me back and has my record open in front of her (she always mentions it so I know she does), she could see things like what I said to her the last time we talked.

I re-explained that pain is not my most limiting GP symptom.  I explained that nausea is one but that the nausea comes only if I push past the other earlier (severe, limiting) symptoms of early satiety, bloating, reflux/regurgitation, and wicked heartburn.  She latched onto the heartburn.  “Have we done a Ph study on you?”

Uh, no.  No you haven’t.  And you haven’t done an endoscopy in over two years despite my symptoms getting worse even on 40 mg of Reglan a day, and despite the fact that I have new (as of last Fall) difficulties swallowing, which I reported and which you ignored.

Honestly though, if I’m going to change GI doctors soon, and I really hope I am, I’m not sure having my current GI do these studies is the best plan.  I’d rather have them done by someone better.

I woke up with no nausea today, which I am attributing to having not taken the Lyrica last night.  My bp is still a little low, and I still don’t know if that’s the lyrica or something else.  It’s confounded by all the fucking meds I’ve been put on (and subsequently, rapidly discontinued) in the last few weeks to deal with the side effects of the Reglan and the worsening GP symptoms after stopping the Reglan.  There was a little window last week where it was better, sometime between the mirtazipine/iberogast/beta blocker clearing my system and day two of the Lyrica.  Now, it’s dropping back into the low 70s in the evening, and I do very much feel like shit when it gets that low.  I know, I have a low BP at baseline anyhow, but not that low.  Here’s how my BP works.

  • Feeling good or stressed:  95-115/55-70
  • Feeling fatigued or easily fatigued:  85-95/48-55
  • Feeling ill, dizzy/lightheaded:  78-85/45-48
  • Feeling presyncopal:  <78/<45

This morning’s BP (several hour, a half liter of water, and one cup of coffee after waking) is 77/55 (hr 67).  Blurg.  I’m hoping this is a lingering effect of the Lyrica.  Tried researching hypotension as a possible side effect and all I got was the vaguely worded side effect of “blood pressure changes”.

getting by

I’m back on the ativan, for the nausea and vomitting.  I think I caused the nausea myself, trying to hydrate up my super low BP, I drank fruit juice and took electrolyte tablets.  I am thinking the electrolyte tablets were too much for my stomach.  If this is what it is, and if it holds to the pattern (I think this happened before, it feels very similar to the cycling nausea from January to March), it’ll take about a week for my stomach to heal.  In the meantime, I’ve lost more weight and I need to be able to eat (and hydrate) so I don’t end up back in the ER.  So I am taking low doses of my ativan.  I was prescribed 1 mg three times a day.  The most I’ve taken is 2 mg, divided doses, i.e. one mg in the AM, then a half in the late afternoon when the nausea comes back and another half before bed.

Yesterday was tough.  I was feeling better BP-wise, and had the nausea under some control, so I went out to do an errand and visit a friend (I have a friend visiting while my husband is away, she drove us out and around yesterday, I’m still not up for driving).  Healthfood store for vitamin K supplement and licorice supplements (I figure it’s supposed to help your stomach and I could, quite frankly, use the blood pressure elevating side effects).  Then over to my other friend’s house for a short visit.  Very short.  I got dizzy, headachey, super fatigued, and nauseous and had to leave.  Unfortunately, as short as it was, I waited too long and forgot we needed to stop somewhere to get my visiting friend dinner.  That was a bad ride home.

Some retching that evening.

And less food that I’d like.  I’m down over 10 lbs now.  About 15 total since this shit all started in early June.

And my GI doctor still hasn’t called me back.  Not that she’s much use, but I figured I should update her and let her know (she told me to call).  Jeez she really sucks.

Husband’s coming home early from his conference tonight.  I’m deeply grateful, since my visiting friend can’t stay as long as she’d initially thought, which was going to leave me all on my lonesome tomorrow and I’m still feeling crappy enough on and off throughout the day that being alone really sucks.  I know there are people who have no other option, but if you did have the option, you’d take it.  So I’m taking it.

It’s probably going to be a long medical week next week.

Wish my good luck and some extra spoons.

holding on, holding out

I’m increasingly thinking I need to be inpatient, and I don’t say that lightly.  I spent yesterday, day two of the massive hypotension, sucking down juice all day and trying to lay with my feet up to keep my resting BP up.  Nope.  The only things that reliably bring it up are stress/anxiety and being up and moving around, both are temporary and the up and moving also jacks up my heart rate to my high POTSy levels.  So that’s no good.  Plus, I’m dizzy while I’m up.

The two days of juice have taken their toll on my stomach I think.  Well, that’s what my theory is for why I woke up this AM with stomach pain which quickly progressed to nausea.  Took a zofran.  An hour later, I was vomiting.  I swear, all zofran does for me is constipate.

The juice, white grape juice, is less acidic than gatorade, but it still is sharp on my stomach.  I am hoping two days of high acid in my stomach is what it was that set things off today…I’m pretty unhappy that I’m puking now too, on top of all this blood pressure crap.

My husband leaves tomorrow for his conference, which he is already planning to cut short since I’m so sick.  A good friend (out of state) is coming up to hang out with me while he’s gone.  I’m not accustomed to having company while I’m so sick, basically she’s going to have to minimally baby sit me (and possibly take me to the ER and watch my cats until my husband gets home) and I am not looking forward to that.  I had been hoping this would be more of a visit, but the last few days are not looking good.

So my husband’s coming back Sunday night, cutting his conference attendance short, which sucks.  But I’m glad.  Because this sucks too, and it’s scary, and the only reason I’m not pushing the doctors to admit me is that I don’t want to be in the hospital while he’s out of town.

I was supposed to check in with Neuro today, about the mirtazipine.  I’m sure they’re going to be unhappy that I discontinued it, but I really feel I had good reason to do so.  Of course, today’s nausea and vomiting doesn’t help my  case that without mirtazipine, I can at least tolerate a liquid diet.  😦  But up until today, I was doing much better OFF the mirtazipine than on, stomach-wise.

crash

My blood pressure has crashed.  I had noticed that it was tanking in the evenings, down in the mid 70s a few times.  I mentioned it to the neurologists.  Not even a raised eyebrow.

Well, yesterday my systolic got down to 69.  And for the record, no I did not feel at all well.  But I didn’t go to the hospital or call my primary care (who would have just said “go to the hospital”) because I know how you get treated in the ER, i.e. like shit, if you’re a woman with a psych history.  And I now am.  And if I’m stressed and anxious, which I am just thinking of going to the ER, my blood pressure goes up.  So it’s a catch 22.  If I go for my super low blood pressure, I’m going to be so keyed up about going that my blood pressure will look low/normal (like, 101/55) and not crazy hypotensive (69/45).

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.

“is it your back?”

My husband is hurting.  His back, to be precise.  It’s all messed up.  He said that he’d had growing discomfort over about a week, and then by Monday it was acutely painful.  The poor guy.  And of course it happens after we’ve moved to a place with stairs.

So far, all he’s got is “back strain” and “spasm” and orders to rest and take pain meds.  It does not seem to be helping much.  And the pain meds are making him sick.  A little alarmingly, his blood pressure’s been spiking.  Although he’s overweight (and that’s probably what did in the back), his blood pressure’s always been really good.  During these episodes of feeling gross, I’ve had him check his blood pressure, thinking that maybe the pain med was dropping it.  Nope.  One thirty something over 89 is not low.  Diastolic-wise it’s quite firmly hypertensive.  Systolic, I guess there’s some debate as to whether 130s is hypertensive or pre-hypertensive.  My passive exposure to medical stuff leads me to the conclusion that this counts as a high blood pressure, but Dr. Google says “prehypertensive”.  If anyone knows if Vicodin can cause blood pressure spikes, please let me know!

I’m so worried about him.  I did get him in to see our primary care Monday, got x-rays, and he talked to a friend who is a neurologist on Wednesday.  We’re told that unless this continues or gets worse, he wouldn’t be a candidate for further imaging and that docs would recommend treating with pain meds, heat, and rest.  I hope we’re not making a mistake by being conservative about this.  My dad had a bad back and it plagued him his whole adult life.  I still remember a car ride back to Big City from my little brother’s college Way Up North one year in the early 90s, my dad had thrown out his back bending to lift a toilet seat.  The local hospital was just like “holy shit we can’t handle that, eh?” and drugged him up and sent us home to Big City where the BATHs abound and the back specialists can handle a disk that has basically exploded.

I do not want this for my husband.

Today is our anniversary.  😦  I bought him  a heat wrap yesterday as a present.  Happy anniversary, apparently 4 years is hot/cold packs.

 

shine on

Looking for glare guards for a student.  This student has migraines and quite significant photosensitivity.  Oh boy can I relate.

I told my boss I found some that got good reviews and asked if I should forward the info to the student.  Boss says yes and get one for yourself if you want too.

Sweet, because at work I have a nice new computer (an all in one) that has a big shiny monitor.  I have never used a computer with a shiny monitor and I know that this is going to be an issue for me.  I’m also desperate to get some alternative lighting in my office because right now it’s overhead fluorescent lights.  Ugh.  I’m told the couch I asked for was delivered yesterday.  It’s not new, we’ll see if it’s un-moldy enough to stay in my office.  New has drawbacks too – some materials make me sick from the fumes.  I don’t know if it’s glue or dye or fabric treatments or all of the above but I know there are some pieces of furniture I basically have to run away from.  I am hoping the couch is good.  I need a place to get horizontal sometimes when I’m at work, like when my blood pressure or blood sugar drop into the craptastic range, or when a migraine is making me feel like I’m on the deck of a ship.

 

Hot mess?

Yep.

 

Pain has been back twice. Last Friday & today.  Bad today.  And right now, my blood pressure is 77/45.  Blood sugar is 67.  And exploratory lap is scheduled for Monday.

salt

I have always loved and craved salt.  For a while, when I was married to the ER doctor, I avoided salt.  He was a bit on the hypertensive side, so I had gotten in the habit of reducing or eliminating salt in recipes and we didn’t have table salt.   For some time after that relationship ended, I continued the reduced salt habit.  Recently though, I’ve been told by several doctors that I need more salt.  “Ok, well then, more salt it is!” I decided happily.

It is becoming clear though, especially on days when I can’t eat much, that I am not getting enough salt in through food alone.  “You should be taking salt pills” said the genetics guy, in reference to my POTS-like symptoms.  “Why aren’t you on salt pills?” asked the RN at my neurologist’s office when we were talking about my very low blood pressure and habit of passing out.

I’ve tried Florinef, but it made me super nauseous.  I’ve tried Midodrine, but it was recalled shortly after I began taking it.  I don’t know if it’s back out yet, it’s one of those drugs that the FDA recalled because, as I understand it, it’s too old (that’s a loaded statement, I know, but it’s my interpretation of what has happened with this and another drug I take, Levsin/hyoscyamine. In the case of hyoscyamine at least, the reason for pulling approval was that the drug was old enough that it hadn’t been tested under the newer FDA standards for efficacy…let me break that down:  it’s not that this drug which many people with IBS-D type symptoms take is dangerous, it’s that despite us and our doctors finding it to be a helpful and effective drug, the (generic) drug doesn’t make enough money for a drug company to have invested in testing its efficacy and so the FDA has pulled its approval.  I can still get Levsin, but because of the FDA action, I pay for it out of pocket, and ration my pills like they were gold).

And so I think I will try salt pills.  No idea what’s a good one, I should probably ask a doctor.  But I’m asking here too.  If you’ve had any experience with them, let me know.