Sometimes, I wish I were dead. It's true...I imagine all the sleep I could be getting via Eternal Slumber and I get jealous (if only briefly) of those who have crossed the Heavenly Divide. And, sometimes I wish I weren't in this body (dead or not)...especially when it *acts up*. There's hardly anything worse than the betrayal of one's body...well, other than being DEAD, that is! Hehe...SYMPTOMS:
1) Began a week and a half ago with dizzy *spins* episode...I fell and hit my head rather hard as a result of the first onset of dizziness (see previous post on *goose egg*)
2) Fatigue began to worsen around the same time as the first episodic *spins*, gradually becoming severe and debilitating
3) Dizzy/*spins* returned on Tuesday of this past week, worsening...creating moderate nausea
4) Left eye tic
5) Increased confusion
6) Decreased sleep/insomnia
7) Anxiety...resulting from continuous dizzy sensation
Let me apologize now if this post reads in disjointed fashion...it's just the way my brain is working right now. And it is taking all of my effort to look at my laptop screen without feeling urges to vomit (no, NOT because I am horrified by what I am writing! It's the light/movement of it all, silly).
Yeah, so I've been feeling like cow dung on a hot, summer day at noon...smelly and repulsive...for the past 5 days...and not a medical professional among us/me can unlock the mystery as to WHY. Gawd knows there's been valiant effort to do so...thousands of insurance dollars have been sucked up by the health care system monetary vacuum just this week in an effort to answer the mystery question: Why? And what?
I've mentioned before in this blog that I would sell my own mother for the promise of never having to feel nauseated/vomit again. I ABHOR that feeling with great passion. I have been known to stand barefoot in snow drifts to keep from hurling...for some odd reason suffering near frost bite seems to shut down the part of the brain that controls upchucking...just something I learned along the way of my *NO HURL* rule.
So, you can possibly imagine the utter horror I began to experience when the dizziness returned with a vengeance on Tuesday, causing waves of nausea to set in? I IMMEDIATELY and without delay consulted Dr. She Who Will Not Be Named...she emailed me to say she thought I was experiencing "post concussive syndrome" from hitting my head. I emailed her back a not so pretty reply saying she wasn't listening to me/reading my typing closely...I WAS EFFING DIZZY BEFORE I HIT MY HEAD, WHICH WAS THE CAUSE OF ME HITTING MY HEAD IN THE FIRST PLACE LAST WEEK!!
A long saga could grow longer at this juncture...suffice it to say, I begged a spot on the good doctor's schedule on Thursday and went in to see her kindly associate (Dr. SWWNBN also had to poke her nose in my room/business, probably feeling slighted that I had questioned her not-so-well-thought-out response in email and was choosing to attach myself like disturbing fungi to her more kindly associate).
Dr. SWWNBN's kindly associate did a full neuro exam and was puzzled. I was NOT complaining of vertigo (had that before and never want it again!), but instead dizziness. My blood pressure was elevated, my left eyelids felt like a ticking time bomb but I was not experiencing nystagmus (eyeball tics), and I was beyond fatigued exhaustion...I was also told my pulse was "thready" and K.A. (kindly associate) discovered I've been walking around with a heart murmur probably since birth (I dunno...doncha THINK someone might have found that benign heart defect BEFORE during one of the multitude of tests I've had in the past?!??!). K.A. went and fetched Dr. SWWNBN and they both sat and stared at me for several minutes.
Threats of medical tests flew wildly around the 6 X 8 exam room...a threat of hospital admission was quickly squashed by me...threats to send me to the ER were also *poo-pooed*. I wasn't dying...I just WANTED to.
I had stat labwork drawn...this resulted in finding a low normal TSH level (thyroid stimulating hormone), but it was STILL within normal limits...probably not the culprit behind the symptoms. I passed my neuro exams relatively well...this (whatever THIS is) wasn't feeling completely neurological in nature. The thought my heart could be malfunctioning entered the picture.
I consented to a repeat echocardiogram on Friday (I was on Novantrone at one time, which can cause cardiotoxicity, aka, congestive heart failure) as well as my five hundredth gazillion MRI and something new, called an MRA (magnetic imaging that looks specifically at the vessels in the brain and spine). All in all, this testing process took up about 5 hours on Friday...I was exhausted/sickly/anxious BEFORE I got the testing done and, by the time I returned home (not without entertainment from my local Somali Yellow Cab drivers) I was completely spent. I got carrying copies of my MRI/MRA (I suggest this to every MSer...keep your own dayumed copies of testing...diagnostic facilities can and will release a copy to you) and brought them home to peek. Since I've only seen like five hundred gazillion MRI's done of my brain, I feel pretty comfortable interpreting my own scans...and I saw NOTHING OUT OF THE ORDINARY MS BRAIN. No enhancements, no tumors, no gaping black holes...just my standard brain on MS and no diagnostically active disease process.
Yet, still I feel ill. And by the 5th day of dizziness/nausea/severe fatigue, I can honestly say I have thought, "I hope this ends soon or actually kills me". Food is not my friend...sleep is not my friend (because the dizziness/nausea keeps waking me or won't allow me to fall asleep)...and my FRIENDS are quickly becoming not my friends due to incessant whining on my part. :-) I have settled on the notion this must simply be something viral (although I've had no fever, malaise, body aches to speak of) OR...I have developed Somatoform Disorder or Munchausen's (psych disorders). That would STILL keep this all in my head even WITHOUT blaming the MS that IS in my head!
I did start taking Meclizine (anti emetic/motion sickness medication) at the suggestion of Dr. SWWNBN and also added Klonopin today because my anxiety was climbing toward the roof to jump (my anxiety was, not me!). I have let K.A. know if this doesn't pass soon, I will be begging K.A. for steroids to *pretend* this is MS-related just to see if the roids might assist.
And now I ask YOU, dear MS readers (all two of you): Have you ever experienced similar symptoms that were non-vertigo-esk, yet had accompanying dizziness/severe fatigue/nausea? I'd like to get some feedback if anyone ELSE has had anything similar that just won't go away (I actually believe if this were viral in nature, I would be seeing some relief by now...sigh)? I'm pretty sure this isn't my ticker (heart) even though those test results have not returned yet.
I just feel SICK, but not in a flu-like bug/germ-y sort of way...and I kind of DO want to close my eyes and just pretend I'm dead at the moment. Anyone? Am I completely alone here??? Somebody throw me a frickin' bone here and tell me this, too, shall pass...or I will...either way, I'm good with it...LOL
16 years ago, I went through that exact same thing. One solid week of extreme dizziness and running to the bathroom thinking I was going to get rid of whatever was in my system, which after having not eaten for a couple of days, was absolutely nothing. And I didn't know what end to put over the toilet. No fever to indicate an infection, but everything was chalked up to a bad flu bug.
ReplyDeleteWas completely debilitated. And no one could figure out what was going on. Within a couple of months the anxiety level rose high enough for my doc to give me ativan. And I asked to see a psyche professional.
I was having panic attacks, not eating properly of course, simply afraid I was going to disperse anything I took in. I spent my non-dizzy time sleeping.
Long story short, I got myself over the panic attacks and diagnosed myself with depression. My doc agreed, got me on appropriate meds, and I've been good ever since.
But at the time, I wanted to die. From the time of onset to recovery (at least enough to return to work) was about 6 months. I was off work for 3 months total.
This all occurred 5 years before MS, though I truly believe it was the onset of my MS. There have been studies linking depression up to 3 years before onset of "physical" symptoms of MS, but I am convinced that was the beginning of my brain chemistry changing because of MS.
We all know by now that physical symptoms aren't the only result of MS. Anxiety, depression, and other mood changes are also connected to MS. And the mood changes can result in physical changes and symptoms.
So you're not the only one. Been there, done that, threw up on the t-shirt. With any luck, it is transitory and just another one of those annoying things we MSers suffer through.
Sending good thoughts your way. you have to get better. If only to amuse your minions.
S.
I have never had this but I will hold your hand until this passes.....will that help? :(
ReplyDeleteI am so sorry Linda D.
I don't know what to say.
Oh Brain. So sorry you are ill. If it's not one thing it's another--and ultimately Drs will conclude it has to do with MS. Ah, nice to have the default disease to make the default dx. I'm surprised they did manage to do all those tests instead of just writing it off.
ReplyDeleteYour symptoms sound like me on steroids. A personal hell I hope to avoid.
Hang in there. Looking forward to better days for you and better blogs for us!
I actually expereince something similar a lot. Mine is usually not as severe as your's sounds but I have been feeling nauseated fro about four days now and my head has also been aching a lot. I frequently get dizzy at the end of a long day. It seems my only cure is lots of sleep but when it is most severe I too cannot sleep. I can relate to the feeling of wanting to die after a few days of these symptoms. Mine illnesses often seem related to my period but not always. They are often tied to fatigue, especially to tired eyes.
ReplyDeleteJust a thought: I had frequent vomiting for several years and was on meclizine for dizzyness before I was dx with gastroparesis. The neurologist thought those symptoms were from the betaseron and dc'd that. We went round and round till my Internist suggested I go to a gastroenterologist. I guess gastroparesis happens with MS. Toss it around and think on it.
ReplyDeleteMan o' man, Linda, when you get sick you know how to do it right. You sound completely miserable. I feel so bad for you.
ReplyDeleteIn my 27 1/2 years with MS I've not experienced anything like this. The only time my head spun so bad that I threw up was when I gave myself food poisoning! So I have no suggestions for you. Sorry. Also, no experience with heart murmurs and thready pulses. Sorry.
Nagging thought: could the flu bug be this insidious? It is flu season, after all.
I had the same thing as Shauna. I didn't get diagnosed quick enough to avoid a complete mental breakdown after a week of no sleep or food. Then they FINALLY gave me something to help me get back to life, even though I had called them several times during that week. This was about 5 years before finding out I had MS, so maybe it was the beginning of MS, who knows? I just know it SUCKED!
ReplyDeleteI've had something similar a couple of times. The first time my dr sent me thru lots of tests to find a reason outside of MS to explain what was happening. I'm still confused over what she thought was the culprit, but I ended up taking balance PT which was no fun since I couldn't walk a straight line. And, like you, I was just too tired in addition to being dizzy all the time.
ReplyDeleteThe second time came on very fast -- I felt a little off-balance and then just keeled over with no warning. That time I went on steroids but had such shaky legs in addition to dizziness that I ended up walking with a cane for a couple of months.
Good luck with your steroids. You must be done by now. Give yourself some time to heal.
BTW, I just love your blog. You make me laugh.