“Brain on Fire”

The past couple weeks have been a mess.

I’ve been in the hospital (ER and admitted) twice now in a week.  This inexplicable hypertension coupled with untameable vomiting and nausea is getting worse.

Recently I picked up the book “Brain on Fire” by Susannah Cahalan.  It’s a non-fiction account of a woman’s strange experiences trying to get her unusual medical condition diagnosed.

Brain on Fire

I’m about halfway through it and it’s causing me some concern.  Now, I don’t think I have what Ms. Cahalan has.  I’m not that crazy.  But if her inexplicable seizures were replaced with my random hypertension spikes, we would have a similar illness.  Her mental-health related symptoms are slightly different, but only in how they manifest.

I wish I had access to such doctors as she did.

The most I can be thankful for is having a mother that is just as much of a warrior for me as Ms. Cahalan’s mother was for her.  I am most thankful for that.

I am however, enraged with doctors, depressed by the hopelessness of my condition seeming to be un-prognosis-able (I made a word- deal with it), and just tired.  So very tired.  The additional meds they’ve put me on just have awful side effects on top of the actual effects of my body trying to fight this mysterious condition.

So far I have the following:
-hypertension (scary-high blood pressure) that does not always respond to meds (it seems to fluctuate at random and not really in relation to what I am taking/prescribed)
-crippling migraines (they usually happen during the BP spikes)
-random bouts of nausea/vomiting that is so bad I spend hours in the bathroom
-bursts of tingling/numbness in varying extremities or somewhere on head/scalp that lasts for hours
-dizziness and lightheadness frequently throughout the day (and not necessary when the BP is at it’s highest)
-extreme insomnia
-low to nonexistence appetite (this may technically be a mental-health symptom due to my ED, but I’m not sure)
-verrrrrry slow healing and bad scarring from the simplest cuts or scratches (my mother insists this is part of my symptoms)
-constantly low potassium (even if I try to take supplements, arrange my diet to try and get extra)

And that’s not even counting any of the mental-health symptoms; which if I read into the interesting case in this book, can be coupled with physical symptoms to form a diagnosis.

I haven’t gotten far enough in the book to read about Ms. Cahalan’s actual diagnosis, but I have read articles on this case in the past.  It ends up being some lesser known autoimmune disorder.  My mother still thinks this is what I have.  I did have some blood tests show my ANA as positive (which I’m led to believe is some sort of indicator of an autoimmune problem).  But further tests were all inconclusive.

Anyway, I’m struggling.  I’m struggling a lot.  I’m feeling very lost and hopeless with these walls that keep getting thrown up regarding my health.  Even when I try to work with a plan or a doctor, it doesn’t help or another roadblock is placed in my way.

I’m wondering if perhaps it isn’t really all worth.   I wouldn’t say I’m suicidal, per se, just…tired and hopeless.  I wouldn’t say no to an “off” switch, but I don’t have the energy to create that switch on my own.

Obviously with the constant pressures of 200/150, my body is doing it for me anyway.

21 thoughts on ““Brain on Fire”

  1. Wanderer

    Dearest Pen,

    I’ve been wondering about your silence and I am so sorry that you’re going through all this. I know first hand how frustrating it is to have a chronic health issue that is undiagnosable. Mine is nothing like yours—so I can’t begin to understand the pain. I, too, am thankful that your mother is such a warrior, such a support. Please hang in there–I know you can do it. I can feel your strength through this post even though I know you are feeling the opposite.

    lots of *hugs*

    Reply
    1. Pen Post author

      Thank you. Sorry for the long absence. Work and health stress combined into this ball of misery that kept me from the internet mostly.

      I’m sorry you have a chronic unsolvable issue as well; no matter how dissimilar. It’s incredible how much we still don’t know about the human body and health and all those things. A lot has happened in mere decades though, so I’m hoping something amazing will be managed soon.
      Or just better meds to manage it. Whatever.

      Thanks for the hugs ❤

      Reply
      1. Wanderer

        Hey, I can understand staying away from the internet—I wouldn’t want to deal with that on top of everything else. I’m just glad that you popped in again.

        It’s okay—I think I’ve finally found a good balance of diet/meds and it just takes time. But you’re right that it’s so frustrating we can know so much and there are still so many things we can’t figure out. I hope they figure it out and get you on the right medications or whatever it takes. ❤

  2. vwoopvwoop

    PEN! *hugs forever* hi babydoll! it’s great to hear from you. even though this update is not great. 😦 man, i hope they figure out what’s going on, and soon. i’m so sorry you’ve been in the ER, that place is the opposite of fun. i’m so sorry you’re suffering, love, i want you to thrive! much, much love to youuuuuuuuuuu, a million hugs and cuddles. i’m thinking of you and hoping everything gets sorted out as soon as possible. *healing thoughts to you!*

    Reply
    1. Pen Post author

      HIIIIIIII!!!

      I missed you! Your email came right smack in the middle of my feeling super blue and anti-social, but it meant so very much. I really appreciate you reaching out and making sure I’m still hanging around in some way or form.

      Yeah, the hospital sucks. Super triggery and weird.

      Thank you for the cuddles and hugs. I hope you are well. I shall peek in on your blog here momentarily so I can get back in the swing of things.

      Lots of hugs and cuddles and Zoe snuggles back ❤

      Reply
  3. Mental Mama

    I really do hope someone figures this mess out for you, and soon. I’m sure this has just got to be frustrating as hell. You know I’m here for you if you feel up to a chat. *hugs* sweetie

    Reply
  4. tinyfroggs

    We’ve had lots of serious physical health problems over the last 3 years. One thing I know is that low potassium can cause high blood pressure. It may sound counter-intuitive but low potassium makes your heart have to work harder to pump enough blood. Also when a person is vomiting a lot its almost impossible to raise potassium. Sounds like the Drs need to treat some symptoms to eliminate others and then figure out the underlying cause.

    Reply
    1. Pen Post author

      Yes, I know that’s mainly why the potassium is low. However, even with supplements and not vomiting for days, it stays pretty low. I’m on three anti-nausea meds already. They rarely help. The nausea is almost directly tied with either the spiking the blood pressure, or the side effects of the numerous blood pressure medications. Either way, it’s been near-impossible to control.

      It comes back to the hypertension. Why do I have it? Why doesn’t it respond to meds or any changes in my diet/weight?

      Excuse my dumping. I’m aware my ramblings are silly for most people.

      I appreciate your thoughts though. Take care.

      Reply
  5. Bourbon

    I just want to throw a thought out there that I had whilst reading this. I think it was when you said “low potassium”. Isn’t low potassium (therefore high blood pressure/bad healing) a consequence of ED’s? I’m sorry I don’t want to say something wrong but… I guess I’m worried for you xx

    Reply
    1. Pen Post author

      Hm. I suppose. My BMI has never been in that zone where I’m considered to have “dangerous health problems” with ED. And I always thought restricting-type ED persons had lower BP, while binging/purging type could have higher, but due mostly to weight from binging.
      Honestly, my ED is something I hoard to myself desperately, so I haven’t said something like that to my doctors or parents.
      But you’d think some test would come back saying “malnourished” or some sort of organ damage or blood results. My doctors tend to say I have the kidneys and veins/arteries of a god because they’re still perfect despite constant BP of at least 140/100 or higher.
      I mean, even when I’m in recovery and very good about my diet, my BP is still out in no-man’s land. It doesn’t seem directly related, but you are probably right on that it is an influence.
      It still doesn’t explain why the hypertension doesn’t respond to any meds though 😦

      Reply
  6. Grainne

    Been worried about you. Sorry to hear you’re having such a rotten time 😦 Wish I had something to help…you know I’ve been on that diagnosis path for years too…unknown causes and mediation trials (currently tossing cookies every time I eat…yay new med). I’ll send any healing thoughts I can. xx

    Reply
    1. Pen Post author

      Ick. I saw that. We’re apparently throwing up buddies right now (EWWW, but sort of funny).

      I’m sad to hear you’re having a rotten time with docs/meds too! We both just need to have a freakin workable prognosis!

      Lots of healing thoughts back atcha ❤

      Reply
  7. kat

    i know how impossible it is to go thru having an undiagnosible illness. luckily, mine was asthma, which is not (usually) serious. still, it took me 3 yrs of feeling like i was dying if i sat up, if i did anything like getting dressed or walking to the bathroom. i was sure i was having a heart attack or some other thing that was suffocating me. doctors couldn’t find what was wrong for 3 yrs. boy was i happy to have a diagnosis and a treatment.

    i really hope you get this solved much sooner rather than later, and hopefully it will turn out to be something less serious and easy to treat and/or manage. all my good thoughts sent your way. hang in there!

    Reply
    1. Pen Post author

      Seems we all need some more Dr. House around here!

      I’m glad yours got figured out. I’m going on my 2nd year of no real diagnosis and no prognosis. Hoping it’ll get figured out soon.

      Thanks for the thoughts ❤

      Reply
    1. Pen Post author

      I do recommend the book. It’s great for anyone who struggles with mental-health and any sort of chronic physical condition. Or just anyone who finds that combination interesting.

      Reply
  8. Pingback: Brainitis | pen, paper, and crazy

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