Ascending through the second level of HELL and other thoughts on winning the lottery….

Dante said there were nine levels of hell.  I think he missed a few….


Have you ever had a bad reaction to a medicine?  I’m not talking a quick,-but-scary-allergic,-in-and-out-of-the-ER reaction, but a slow-something-is-seriously-wrong-build-up to a doozy of a prolonged reaction.  A month ago, I had a physical.  My migraine medicine, my precious migraine medicine that has made my life bearable for the last 12 years was messed with in an attempt to get my blood pressure more reasonable.  My doctor didn’t think 88/56 was reasonable.  It seemed fine to me.  What’s a blond without a little dizziness?


In addition, my blood work or perhaps it was the yellow snow, I have no idea, showed that my vitamin D level was low, and my thyroid was a bit low, so I’m on vitamins and meds for those too…   You see where I’m going with this, don’t you?  Multiple meds…  hard to tell what is causing what….  Throw a little more into the soup pot.  


My doctor put me on Topamax for the migraines, which is a drug that has to be ramped up slowly, so I had 25mg week 1, 50mg week 2, 75 mg week 3, and Hell-in-a-tablet week 4.  I kid you not, I thought I was going to die, not anything quick and merciful, but a long slow, drawn out, let your toddler torture you while you’re miserable and alone death.  Yes, most of week 4 occurred while Mr.Tot was in @#%&* CHINA!!  Have I cursed at China enough lately??  Let me curse a little more then….


She had warned me that I might have some pins and needles sensations in my hands and feet, which I did from almost day 1 and even in my mouth – that was weird!  No big deal.  She didn’t warn me that I would be confused,… okay, more confused than normal, and that I would be searching for my words… Oh great, like I don’t do this enough already?  Made conversations with neighbors… umm, what’s that word? All of that though, was still peanuts.  Prior to taking migraine meds, I had always had some body temp regulation issues — could not adjust to large changes quickly (so going in and out of air conditioning really sucks) and have never, NEVER liked the heat.  My last medicine seemed to temper this enough to be manageable, so when I went on the new meds, and suddenly felt like I was melting every time I stepped out the door, I figured my dosage was just too low, and my normal ice-princess nature was kicking back in.  


Week 4, also coincides with my Synthroid (Thyroid med) probably finally kicking in… just to complicate matters.  As I was saying, Week 4, however, things went to hell, all the way to level 9.  Okay, maybe only level 7, but only because I stayed indoors as much as possible.  I started feeling hot any time the temperature went over 78.6° or if I moved a skosh more than necessary pushing my body into any gear at all, and generating my own unbearable heat.  I would walk the dogs in the morning when it was 74° and come home ready to drop.  A week of 95° weather just taunted me.  I would go to the pool with Tot, and just about dive into the foot of water where she likes to play, and lay there immersed to the neck the entire time, thinking, “Bathwater, but better than the inferno…”  Meanwhile other kids are complaining that the water is too cold.  What???!!!!  It was 80°.


And someone sucked all the moisture out of my mouth, about every 60 seconds.  I was so thirsty, I was drinking 6 qts of water per day.  We have 20 oz bottles, and being home alone, I would fill them up every night and every day line up the empties on the counter – 10 of them.  SIX qts or more….  Now back when Mr.Tot and I first got into working out we tried and tried and tried to drink a gallon of water a day.  The ONE day we got close, it was such a struggle, and we spent most of our time in the smallest room in the house.  Separately of course.  That recommendation to drink 8 glasses of water a day?  This week, I was done by lunchtime, and an early one at that.  So, here I am, drinking 24 8-oz cups of water per day or MORE without even trying, or rather just trying to assuage my thirst and my dry mouth.  If I left the house, I’d have to gauge how long I’d be gone and bring at least enough water for 2 cups/hr with me.   And I got to tour the smallest rooms of all my favorite shopping haunts… What goes in every 20 minutes, must …


On top of this, OHHH yes, there’s more, I had headaches – not the full blown, light-sensitive migraines, but painful and annoying nonetheless non-stop.  And my ear hurt.  So I figured, you know, water toxicity kicks in at about 8 qts per day, and if I keep ramping up, I may be there sooner rather than later, drowning myself outside the pool. Maybe it’s time to see a doctor, especially since we have a 9-day driving vacation starting next week….  I really don’t want to tour every ER along the way.  Seen plenty in the last year or so thanks to, hmm, everyone in our family – my upwards family (M&D & the bros & even the inlaws!) and my downwards family (Mr.Tot, Tot, etc), thank you very much.


Insert here – Welcome home Mr.Tot!  So what if you have 13 hours of jet lag and a 20 hour flight to recover from, I’m losing my mind.    Sleep in???  HA!  You get Tot, while I go figure out what’s wrong with me….  Oh, and while I am completely overjoyed to see you, don’t expect me to be in any way, shape or form, functional, happy, or even the slightest bit sane for the foreseeable future.


Descend to level 8.  Idiot doctor. Excuse me…. Doctor with whom I could not seem to communicate my rapid spiral through the many levels of hell.  My regular doctor was on vacation.  Dr.Smile-while-I-tell-him-I’m-dying told me to ramp down the Topamax, and suggested I immediately try a new medicine for the migraines.   I told him, You’re flipping crazy!  Oh wait, that’s just what I screamed in my head.  I refused to start anything new while I was on vacation, so he conceded and wrote a Rx for my previous meds at 1/3 strength – no good rotten commie bas…  what’s that word again?  Then I tried to ascertain whether going off the Topamax cold turkey would cause health problems or if it was done just to avoid some nuisance side effects.  Obviously since he was more concerned with a few electrical shock side effects than my impending drowning or melting, he didn’t have a firm understanding of the depths of my affliction.  I suspect he thought I was exaggerating and just another hysterical female….  


He did, however, confirm that I had an ear infection, oh make that TWO ear infections, and gave me antibiotics and drops.  The one side that actually hurt got worse before it got better and forced me on the mush diet, since [have you had an ear infection?] it affects your whole jaw, and every time you chew, you feel like someone is applying some sort of unknown torture device to you.  No, not waterboarding, I seemed to be doing that to myself.  Then there are the random shooting pains like someone’s snuck up beside you and stuck a skewer through your head from ear to ear as quick as a bunny.  Sorry, the bunny descriptions sneak in there when you have a toddler.


So I went home frustrated and thoroughly convinced that Mr.Tot would have an excellent legal case against the doctor when I croaked, but how in Hades, which felt like my current address by the way, would I get some real help before it was too late?  It was time to find a new doctor.  After getting as many new doctor recommendations as I could, only to have them ALL shot down, because a) they weren’t on our insurer’s list b) they weren’t taking new patients, c) they didn’t have any openings before we leave on vacation, I crumpled.   Maybe I would be fine…  but I sure as heck wasn’t convinced of it.  


So, of course, I turned to the internet to arm myself with knowledge and give whatever doctor I ended up seeing, all the umpteen possibilities of what might be contributing to my demise, I mean, my misery.  I would be happy to do all the work and give them all the glory – just HELP!!!  And I found a whole bunch of hints and glimmers: Topamax is linked to things like Oligohidrosis (decreased sweating) which can lead a person to be hot, Hyperchloremia, which is an electrolyte disturbance and causes intense thirst, and can cause temporary hyperglycemia, which can in turn lead to….  anyone???  EAR INFECTIONS!!   Oh, but Synthroid can also cause heat intolerance, so who’s to say what is responsible for what?   Even with all this knowledge, I still didn’t know if these meds had jolted my system out of kilter enough that I needed help getting it back in kilter (meaning: Good condition; proper form, in working order for those of you like me who have only ever used that word in the negative, I had to look it up to be sure…) or if just stopping the meds would suffice.  And I was still on the Synthroid… I couldn’t just go off of that… could I?   Or maybe the ear infections had gone and met in the middle for a great big party – infecting the inner depths of my brain, and a few important glands along the way and were just generally making me crazy.  How was I to KNOW?  Sure felt like a party was going on in there…  and I wasn’t invited.


Mr.Tot saved the day, though I bucked the suggestion at first, I had no choice if I wanted to get help.  I called back my doctor’s office and told them I wanted to see someone OTHER than Dr.Smiley.  See, as much as I rant and rave HERE,  I  am highly conflict avoidant.  Hate, hate hate arguing.  Start shaking.  Can’t come up with a logical thought…. I’m pretty much reduced to a quivering pile of mush.  So this was a huge deal for me to risk seeing Dr. Smiley while trying to get some real help.  Which is why I came up with all the euphemisms about miscommunicating, and misunderstanding…. to remove the poisoned arrows…  OH, enough of that. 


I saw a nurse practitioner, a real person, who admitted she didn’t know what was going on with me, and nobody really could, but proceeded to listen to all my crazy ideas, (well, not the party-in-my-brain one, but the rest).  I acknowledged that I had scoured the internet which was a dangerous thing and could indeed be dying from any number of cancers and rare diseases, but probably wasn’t.  She reviewed my lab results and  discussed my situation and ALLELUIA, there’s hope after all.  Turns out that my thyroid measurement was on such a hairy edge of even considering suggesting prescribing Synthroid, that she, my new best friend and savior told me I could stop taking it if I wished…. Um…  YEA, DONE!!!  Clean my system out.  Get back to – what’s that word they use in science class for experiments – the one case they compare all the others to??? baseline, normal… CONTROL (Just the name of my field of engineering – that’s ALL… jeepers)  Will I ever finish this story?  Maybe… possibly.  If you’re lucky…  Where was I?  Oh, and in her experience, she had not had much luck with prescribing Topamax in doses over 50mg/day without all sort of side effect complaints.  She told me to cut back on the water and add in some Gatorade for my electrolytes.  She also took some blood tests and ordered their results STAT.  Loved that!!!  At least I knew right away that I wasn’t dying, at least not in any way that was obvious.  And I am removing all of the offending criminals from my body, eventually.  Topamax has a half-life of 19-23 hours which is fabulous – I’ll be rid of this before traveling.  Gotta LOVE the internet for the information it can provide!!!!  Synthroid’s half life is 6-7 days, which means I have to wait 2 weeks to get down to 25% level, 3 weeks -12.5%, etc….  so it just depends how potent the stuff is and if it actually played a role in my personal hell.  Fortunately antibiotics usually work pretty quick, so my ears should be cleared up before traveling as well.  


At the moment, I’m down to the occasional skewer in the ear, and about 4.5 qts water/day, occasional headaches, and heat irritation rather than intolerance.  MAJOR progress.  But I also took more of my old medicine than the 1/3 dose prescribed – Shhhh don’t tell!!!   So, life should get back to normal soon without intervening deluxe hospital staycation, and for that I am ever more grateful.  I wrote a while back about feeling like I had won the lottery when I started my thyroid meds…   It’s my understanding that most people who win the lottery end up worse off than before.  So now, I KNOW I won the lottery.  I was duped… a guinea pig of sorts…  Perhaps we are all guinea pigs to some extent in the great field of medicine…  It is an art after all, not a science…  And I, for one, do not always appreciate that.  You can be sure that I won’t be using Synthroid or Topamax again, and will probably insist on starting ONE new medicine at a time in the future….  The delicate balance of the human body is something to be guarded and revered and not carelessly messed with… Although drugs have made my life bearable, I have also just had a glimpse into the dark side and have a healthy respect for approaching new ones with care…


Hmmm, seems I’ve gotten pretty good at ranting lately.  Maybe I should go professional!

And I’ll get back to lighter topics like the pickle-puss, and Tot’s aerial aqua-gymnastics later…  Hope to have some video for you of that one!

I really gotta cut back on this ranting – it’s cutting into my getting stuff done time…  

3 comments to Ascending through the second level of HELL and other thoughts on winning the lottery….

  • Sherri

    A friend used to take “Stupomax” and although she is very intelligent as you are, she couldn’t find words or remember much of anything when she was on it. She couldn’t wait to be off it & I noticed a difference when she stopped taking it.

    I’m so sorry that you’ve had a rough go of it & I hope you are closer to normal soon (or what passes for normal!) ;-)

  • [...] When the Tot alarm went off early this morning, I rolled out of bed, and put my clothes on when I realized my forearms were itchy.  Then I noticed they were red and bumpy.  So I took my pants off.  Sure enough – my legs were covered too.   Panic starts to set in…  what the hell?  Last week, I had a toothache which led to a root canal on Monday and now this?  Can I still go to water aerobics?  We don’t even have a regular doctor anymore, as our doctor, who annoyed us greatly by never being available, announced she was leaving her practice, and there is no way in hell, I’m getting stuck with Dr.Smiles-constantly-but-doesn’t-listen-to-a-word-I-say-guy again.  He practically water boarded me. [...]

  • [...] When the Tot alarm went off early this morning, I rolled out of bed, and put my clothes on when I realized my forearms were itchy.  Then I noticed they were red and bumpy.  So I took my pants off.  Sure enough – my legs were covered too.   Panic starts to set in…  what the hell?  Last week, I had a toothache which led to a root canal on Monday and now this?  Can I still go to water aerobics?  We don’t even have a regular doctor anymore, as our doctor, who annoyed us greatly by never being available, announced she was leaving her practice, and there is no way in hell, I’m getting stuck with Dr.Smiles-constantly-but-doesn’t-listen-to-a-word-I-say-guy again.  He practically water boarded me. [...]

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