Thus Spake Zuska

Warning: this is an intensely personal piece and I’m not sure why I’m posting it at all, except that some people I know have been encouraging me for awhile to write more about my illness or disability in general. So blame them.

(By the way, you aren’t supposed to read this and feel pity for me. Just understand better what it’s like to be chronically ill – and maybe experience your own health a little more sweetly, or take comfort if you are ill, too.)

I got up much earlier than usual this morning, so that I could be at the hospital imaging center by 7:45 a.m. I was scheduled to have an MRI with contrast of my pituitary gland. They do pituitary studies early in the morning, I was told when I called to schedule the MRI.

I was having the MRI because my endocrinologist ordered it. I have an endocrinologist because my prolactin levels are elevated. My hyperprolactinemia is the result of either (A) a prolactinoma, an adenoma of the pituitary gland, or (B) a side effect of metoclopramide, which I take to treat migraine pain. I take metoclopramide, because OTC pain relievers like aspirin and Tylenol and Aleve and Excedrin bring no relief, and because I can’t take narcotic pain relievers anymore. Over the past four years I’ve taken, at one time or another, relafen, promethazine, seroquel, vioxx, naproxen, vicodin, tramadol, vicoprofen, darvocet, percoset, demerol, dilaudid, fentanyl, and thorazine to treat migraine pain. I can’t take the narcotics anymore because I’ve developed a high tolerance (which was a scary issue when I had two abdominal surgeries in 2005, and the morphine was barely cutting the pain) and because my neurologist thought the narcotics were causing rebound headaches.

So, the MRI is supposed to help decide between options A or B. Prolactinomas are benign tumors and relatively easily treated, but still, I’m hoping for B. But then I don’t know what I’ll do. Metoclopramide is my first line of defense against migraine pain; it’s somewhat sedating, but not terribly so. My neurologist had me try switching to Aleve, but that was like eating candy pills. Seroquel works well, but is very sedating, and thorazine just turns me into a zombie for a day and a half. It’s reserved only for the very worst migraines. If I can’t take the metoclopramide, I fear I’m just stuck with seroquel, and every migraine, even the minor ones, means hours and hours of sleep, and a foggy feeling afterward. With metoclopramide, I could often be down for just one or two or three hours and be almost like normal afterwards. I see the neurologist tomorrow for my three-month check-up and another botox treatment. I hope he’s in the mood to be creative about pain management.

And speaking of pain management…when it came time to inject the contrast agent for the MRI, the technician was either not experienced or was having a bad day. I know I have small veins, but on the first try she dug into my right arm at a spot that wasn’t even near the vein. It was so painful it made me cry, and after four years of constant doctoring and hospitalizations, I am used to getting stuck. It hurt after she withdrew the needle, for a good five minutes. It wasn’t till her third try that she got a needle in, using a pediatric needle. By then she’d stuck my right arm, left arm, and left hand. I felt shaky and upset, and yet was trying to hold my head still and in place for the next scan. I was mad at myself for feeling so distressed over the injection. Lying there listening to the loud gradients knocking, it was all I could do to keep still and calm till the scan was over. This happens to me now and then – I will think I am perfectly fine, and then some small thing will disturb my careful equilibrium, and all the grief of what I’ve lost and the turmoil of the past four years comes boiling right to the surface, pounding against my chest, welling up and spilling out, and all some poor technician trying to do her job sees is that the patient is crying over a needle stick.

I still had to go to the lab to get blood drawn for further tests after the MRI. Since I take plavix, I bruise easily, so you can imagine how my arms look now.

I wish this week was over already, but even when it is, I still have the return visit to the endocrinologist on the horizon, and finding out the results of the MRI, and who knows what else after that. I am so tired of going to the doctor. Believe me, I am aware that I am not as ill as some of the people I see in the waiting rooms. I accompany my mother to the doctor a lot, and I know old age can have much worse in store for all of us. My mother is sick of being sick, too. I’m lucky that my doctors are very good doctors, and good people, and I’m lucky I have health insurance, and I’m grateful for those things. I just want to say to you: if your life only includes a yearly check-up and maybe a visit once in a while for some minor illness that’s easily cured, count your blessings. I miss that life. What I’m tired of is having an illness that never gets cured, only managed. I suppose that’s better than one that kills you. But I’d rather have none at all.

Comments

#1 Brian
June 28, 2007

That’s really interesting (not to be dismissive of what a pain all this must be for you) – that a pituitary adenoma could have an effect as specific as elevation of prolactin levels. Is there elevation of any other hormones?

And the phlebotomist’s skill level makes an enormous difference. A few years ago, I was having blood drawn by a nurse who was terrible at it – which happens. But she dropped the tube and broke it, then had to come back for more blood, and then dropped the tube again! At that point I was ready to scream “Get away from me!”

I hope everything works out.
#2 T. Bruce McNeely
June 28, 2007

To answer Brian’s question: pituitary adenomas are specific in their secretions, since different cell types secrete different hormones. The most common hypersecretory tumors are prolactinomas, which secrete (surprise surprise) prolactin. Tumors that secrete growth hormone are responsible for cases of gigantism and acromegaly. No, there isn’t secretion of other hormones. However, if the tumor grows big enough, it can wipe out the rest of the pituitary and result in deficits of other hormones (GH, TSH, ACTH etc.).
It’s a bummer that you have to suffer this way with your chronic health issues. I have some ongoing health issues, but they are nothing compared to what you describe. I hope some relief comes soon.
#3 absinthe
June 28, 2007

Being sick of being sick sucks. I hope at least something good for you comes out of the MRI.

My doctor prescribed seroquel to help my speech, reading, etc (before it, I couldn’t read much more than a couple of sentences strung together). I don’t know what dose your doctor put you on, but I am on half the lowest dose and it still leaves me groggy the next day. Plus I have “awake dreams” (if that makes sense) if I get up too early the next day. I can’t get off the damn stuff though…not because it is addictive, but because my cognitive abilities and my ability to concentrate on a task are terrible without it.

My doctor put me on seroquel as an “off label” use to improve my cognition…the therapeutic dosages for “on label” uses are up to (and over) 100X the dose I’m on (!). It makes me wonder how the “on label” people function at all during the day.

WRT being poked too many times; it’s happened to me quite a few times because I have small veins and the blood pressure of a cadaver (I don’t even bother trying to give blood anymore after a total of 5 failed attempts). But it’s even worse when you have to watch your kid go through an experience like that. My youngest daughter had double pneumonia last Xmas, and it was complicated by the fact that she is allergic to pretty much every antibiotic known to man. After a couple of days of her getting drastically sicker by the day, I took her into the ER, and they promptly checked her into the hospital to stay for a few days. The ER nurses tried 4 times to get the frickin IV needle in her, *not* using a pediatric needle (I didn’t know while they were trying that they were using a non-pediatric needle on the arm of a three year old). They were very apologetic about their repeated failures, but when they told me they were going to call up to the pediatric ward to get a pediatric nurse with a pediatric needle to put in the IV, I literally felt like striking them. Luckily the pediatric nurse got it in on the first go.

Anyway, I don’t have much helpful to say wrt your illness. I do sympathize and empathize, and you know I’m always available offline if you ever want to chat. About anything.

Luv,

Absinthe
#4 Rebecca
June 29, 2007

Zuska, I have a small inkling of understanding what you are going through, because I have a chronic pain condition too. It’s nowhere near debilitating as yours, and it’s also a lot more straightforward to treat, because it’s “only” a really bad case of golfer’s elbow and accompanying pain up and down my dominant arm.

But like you, I am so jealous of people who have good health and they don’t seem to realize what a gift they have. Most people just use their arms in whatever way they see fit. I have to decide how I can best do every activity while limiting the use of my dominant arm. Is it better to hold the bowl in my dominant arm, and beat the eggs with the other, or vice versa? How can I learn from this technical paper without writing notes? I have trained myself to write with my other hand, but it is arduous and my handwriting, which was gorgeous when I still had the use of my dominant arm, is now nearly illegible except to me.

I don’t like to complain about it or admit that I have a disability but I’m starting to think I should probably seek some accommodations at work.
#5 Mathew
June 29, 2007

Zuska ::

I stumbled upon your blog when Google Alerts emailed me about it finding content based on ‘Prolactinoma’. If you don’t use Google Alerts already I would recommend it. Anywho….

I can’t say that I have met all the complications that you have with your migraines and such but I have been diagnosed with a Prolactinoma. I guess it was found about two years ago by my endocrinologist at Hershey Medical Center in Hershey, PA. They were very quick to find the issue, which wasn’t the case with my family doctor (but in their defense they knew that they were out of their league when my first hormone test came back). Before I began treatment my hormones were about as out of whack as they can be for a 23 year old male. High Estrogen, High Prolactin, Low to almost no testosterone.

Since the identification of my Prolactinoma I was slowly introduced to Cabergoline (or Dostinex) a drug that blocks the production of Prolactin in the pituitary gland. I must say this has helped tremendously with the management of the physical tumor and its effects on my body. But like you mentioned in the end of your post my emotional balance is never settled…making it very trying on my girlfriend…but she is great and stands by me and is my rock. I don’t know how I would have handled all this with out her.

I don’t know if any of that will make you feel better with what you are facing, but keep your chin up. If the issues are caused by a Prolactinoma they are extremely treatable.

I hope you have a good day.

:: Mathew.
#6 Deb
June 29, 2007

I’m wondering why triptans weren’t in your list of drugs you’ve tried. A lot of narcotics can lead to problems. Did any doctor ever prescribe a triptan?
#7 catswym
June 29, 2007

i also deal with several chronic illness problems which cause regular debilitating pain and just overall exhaustion. i esp know what you mean about getting tired of something that is never going to be cured. only “managed”, more or less well. i suppose it is better than one that kills you, altho i don’t always feel that way.

and, to top it off, i’m in grad school which means bad health insurance and a hellish existence despite any medical problems. only one year left, tho.

to me the worst part is the hopelessness that sometimes springs up of: i’m never going to get out from under this.
#8 InDC
June 29, 2007

Zuska, thanks for writing this. My response is along the lines of Rebecca’s: I have a chronic back problem that I’ve been managing with Naprosyn and Flexeril and lifestyle modifications for the past couple of years, and I’m getting to the point of a)worrying about how my condition is likely to worsen as I age, b) worrying about the side effects of the high doses of meds I’m on, and c) wondering if I’m going to have to just accept the disabled label. (I had to fill out a jury duty form recently and check the box saying I had a disability that wouldn’t allow me to serve – because I have to get up and walk around every 30 minutes or so, and the court can’t accommodate that.) I know that my condition isn’t as bad as yours, but I can sympathize with the constant struggle to weigh different undesirable alternatives and tailor the rest of your life to appointments and other requirements. It’s good for me to hear from other people who experiencing similar things.

And, Rebecca, I know what you mean about having to think about adapting every single activity. I hate that.

I’d be interested to know more about other people’s experiences getting help with a condition or combination of conditions that isn’t straightforward or standard, or a treatment that takes a lot of experimentation or modification.
#9 Zuska
June 29, 2007

It was scary for me to post this, but I’m glad now that I did. I think there are a lot of us living with what I call “hidden disabilities”, things that other people can’t see but that cause us pain or other kinds of problems that affect our lives on a daily basis. If you look at me on a day when I’m not having a migraine, you wouldn’t know I have a problem at all. You can’t see the pain that was there yesterday, or the stroke bed inside my brain.

The stroke is why no one prescribes imitrex or similar triptan drugs for me, Deb. I had a stroke in 2003 that was actually caused by a migraine, and in turn the stroke made the migraines more frequent and more severe, leading to my current state. Things are actually better now than they were in 2004, when I was essentially confined to bed at one point – I basically had migraine 24/7 for about a month.

The thing about being disabled is that it is a state any of us can slip into at any moment, without any warning or notice. One minute I’m baking cookies with friends, the next second boom! the worst headache ever in my life, and I’m nearly completely blind. Eventually I got most (but not all) of my sight back.

Or disability sneaks up on you gradually – over time, from repetitive motion, at the computer or through golfing. Dammit, when your recreation bites your ass, that’s so unfair!

I put this post in the category “Making Disability Visible” both because the disability I talk about is not readily visible to others, and because talking about disability is still not something most of us are comfortable with or used to doing – even (or especially?) those of us with some sort of disability. Just because you have a disability doesn’t mean you are comfortable claiming that status, as others above have noted. I could write a whole post on my struggles around that issue. This comment is turning itself into post length, so I probably should stop now. Thank you all for writing.
#10 Zorah
June 29, 2007

Zuska,

Thank you for posting this. I’ve been where you are, and though my condition is comparatively good right now, I live knowing that could change again any day.

I have Rheumatoid Arthritis, which isn’t really related to the arthritis people think of. It’s an immune system disorder, and causes havoc all over the place. Migraines, opthalmic migraines, painful swollen joints when my own immune system attacks them mistakenly, frequent minor illnesses my compromised immune system can’t fight off, severe anemia, constant thrombocytosis… it’s a mess in here. But on the outside, I look fine. The RA is currently in remission (which can come and go for currently unknown reasons). I’ve changed my diet to good effect, take my super-high-dose iron pills, and watch out for colds. I practice a very physically challenging martial art which keeps me in top shape and looking great.

Yet… I’m often so sluggish in the mornings I can barely get out of bed. Opthalmic migraines strike without warning, blocking out most of my vision, rendering me helpless until they go away. No medication has yet worked on them, most have only made me sick, as well as half-blind. Sometimes I need to use a cane for a day or two, to take pressure off the worse knee. The iron makes me queasy. I use all of my sick days, every year, and some vacation for illness or appointments. I’m 31 and I have my own neurologist and cardiologist. I’m terrified of the RA flaring up to full life again, going back to where I was at 25: crying on the kitchen floor, trying to open a bottle of painkillers left-handed with a hammer because my right hand was too painfully stiff and swollen to twist the cap off.

I find I still have trouble explaining my condition to a new supervisor. I feel like a fraud, and I know they look at me and think I’m a hypochondriac or a whiner because I look perfectly healthy. How bad can it really be? It’s a frustrating way to live, on top of the pain and illness and inconvenience. It helps to know that someone else out there understands. So thanks for being visible.
#11 Karen W
June 29, 2007

You mentoned, only briefly, the utilization of Botox as a treatment for your migraines. I, too, have suffered with migraines for years, taken a multiplicity of NASTY pharmaceuticals, and it was only after my pain management M.D. commenced the use of Botox in my scalp, neck, and shoulders that the migraines disappeard for six months at a stretch. Has it not been that helpful for you???

Karen
#12 Zuska
June 29, 2007

Karen, yes, botox has been very helpful. I tend to think of it in a different class, as a preventative, rather than as a treatment or pain management med. So it wasn’t really on my mind when I was writing about the other meds above; I was thinking about what I’ve taking to treat migraines after I get them, not what I take to prevent them. Right now, the combination of Botox every three months, and daily topamax and petadolex seems to be working as well as anything ever has. With this combination, I have migraine on only about 40% of days (as opposed to 60-70% without botox and petadolex) and over the past year of botox treatments, the severity of the migraines has decreased slightly. Also – and this is huge – I have been able to eat a little chocolate again lately!!!!! Yay!

Zorah, my heart goes out to you. RA can be incredibly debilitating and painful. I know exactly what you mean about feeling like a fraud. I wish I could tell you how to make that feeling go away. Maybe I need to write a post about that topic, too.
#13 Mr. Chronic Migraine
June 29, 2007

I hope you are trying the full range of migraine prevention drugs. It’s hard to find ones that help, but well worth it when you do.

Oddball pain treatment ideas: ketamine, methadone (which is thought to have non-opioid effects), lidocaine, mexiletine, magnesium, and tizanidine. Opioid agonist/antagonist drugs like buprenorphine might also be worth a whirl. There are more I am probably forgetting.

Oddball metoclopramide alternative: amoxapine. It is an antidepressant in a class often used for headache prevention, but it also weakly blocks dopamine receptors like metoclopramide.
#14 Mary Lou Jepsen
July 1, 2007

Suzanne,
Thank you for posting this. 12 years ago I was finally diagnosed with a pituitary tumor after similar suffering for many years. Your descriptions brought me back – that diagnosis of this condition takes so long is surprising, given that simple blood tests of hormone levels can be a strong indicator.

This weekend I was also brought back watching a movie called “tom and viv” a depiction of the lives of of TS Eliot and his wife Viv who suffered from pituitary disease before the discovery of hormone treatment and become addicted to ether, etc. I’d recommend it for you.

Also – my pituitary gland had to be removed. I don’t make any hormones anymore and pick my combinations every morning and every evening. Sometimes when people are being jerks at work I take more testesterone so I can be equally arrogant back, angry, think I’m the smartest person in the world, and so forth. The good news is – that gall bladder surgery is statistially more dangerous than pituitary surgery. I travel about 70-90% time internationally for work and have for a number of years taking 12 meds a day and can report – it’s managable.

best of luck to you
the worst is most most likely over,
- Mary Lou