Resucing My Brain, And Drugwatch.com

I've had a terrible time lately with memory and concentration problems.  These have been typical for me over the course of the years with lupus cognitive impairment.  However, all of my autoimmune-related blood work is actually really really good at the moment...good enough to have me wondering if my lab report got switched with someone else's!  Not that I believe the tests we currently have available are always accurate monitors of lupus activity.  Big NO there! :)


But this current problem with cognition just kind of "feels different" from what I have unfortunately had to become used to with SLE.  It is actually a different sensation that I seem to feel inside my head.  I don't go around describing this sort of thing much because I don't want to get locked up in a psych ward.  I have this horrific fear of going to a psych ward and having to explain my problem with fluorescent lighting, and then being assigned to a floor where at least one person thinks he the Antichrist, Hitler, Napoleon, George III.  Or Rush Limbaugh.


Slowly and inefficiently, due to the fact that the researcher here is also the one having the brain problem (I smell irony there; does anyone else?) I've been trying to find out what could be going on in my head besides lupus.  I had the cancer surgery in January, and am aware that there has been discussion in the past about possible long-term effects of anesthesia upon cognitive function, although the focus has been mainly on the elderly.

I'm also in the process of learning about the effects of surgical menopause, which include possible cognitive dysfunction related to the loss of estrogen.


Lastly, I want to mention that although I am a long-term migraineur, I have been avoiding taking the drug Topamax due to its reputation regarding possible effects upon memory and cognition.  Quote of the day:  "If you don't have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you're at the wrong dosage, it will make you dumber than a box of rocks."

After all that I have been through with lupus brain involvement, I just didn't want to potentially add to that particular set of problems in any way, and risk becoming more rocklike.  So I've been sort of skirting around Topamax, trying a lot of other medications for migraine control and treatment, even though Topamax helped a close family member and therefore might be a drug which would reduce my migraine frequency.


And lo and behold, I learned tonight that a medication I recently started, a mood stabilizer, has some things in common with Topamax.  Aha! Eureka!  But it turns out that it is not recommended suddenly stop this med, so now what do I do?  "MAKE AN APPT WITH NEURO" may need to be printed out on a sheet of paper and stuck on my door (I have to leave this room sometime, and then I will see it!)  Because now the differential diagnosis for my half-dead brain is very very complicated.


Usually when I write, words just pour out.  Whether they are interesting or make any sense I can't always say :) but at least the process is pretty effortless.  But no longer.  It is hard to get through a paragraph without going blank at some point while writing it.  And so writing is no longer one of my greatest pleasures and also, since I now find proofreading almost impossible (formerly probably one of my few stellar skills) I have no clue whether what I have written is readable.  I'm actually lucky that I caught myself when I was about to post this on the wrong blog!

For the problems with writing, speaking, concentrating, remembering, making sense, and many other reasons...finding out what the heck is going on upstairs, you know, that place under my hair--is really really REALLY important to me.


So I want to thank this website: http://www.drugwatch.com  *.  This is where I learned more about my new medication.  The site has a wealth of information which could be crucial knowledge for anyone taking medication.  Although I certainly am grateful to be living in an era where "better living through chemistry" has even saved some of our lives -- pharmaceuticals are still complex things. And those of us taking a lot of medications which have never been studied in our particular combination, and who see multiple specialists, often end up needing to be doing some of our own research.  Websites are certainly the cornerstone of this often homebound, impecunious chronic disease patient's ability to do research.

The more people we have looking out for those of us who have little choice but to be guinea pigs, the better, IMHO.


Speaking of looking out for anyone, please volunteer to proofread this and tell me where I screwed up by emailng me at smlupus at gmail dot com :)



* FYI, Drugwatch.com is a comprehensive website featuring information about prescription medications that are available or were previously available worldwide.  Currently, Drugwatch is campaigning to spread awareness about Accutane Side Effects, which can include Crohn’s Disease, Ulcerative Colitis, birth defects and severe liver damage.

And Now, For The Nuclear Option...

(Psst...photo is just clouds...no nukes.)

I'm sorry, but I'm going to be randomizing instead of writing...I'm down-to-the-bone exhausted and barely know what year it is. Surprise, surprise, I've had a few more rough weeks in Lupus Land!  My way of celebrating Lupus Awareness Month, woo-hoo!  Let's all join in, and SING!!!  (no. not really. definitely not. please stop singing.)

For some reason, my blood work is really good now. That should be wonderful news, but a lot of us autoimmune types go through icky times when our tests come out great, but yet we still feel like some evil spirit comes to visit us in the night, sucks out all our energy, tears up our muscles, and smashes our bones.  Somehow.  With perfect blood work.  Truly.  As to why, don't know what to tell you.

Lately I've been feeling like I did pre-diagnosis, many years ago: migraines, some problems with memory and concentration, and every time the barometric pressure dips I'm totally disabled by the kind of fatigue that is just on the sharp edge of I-HAVE-TO-SLEEP-NOW...and, also, wicked arthritis.

This week, we had some rain, which I actually love.  Why do I love rain...? Maybe I enjoy having moist conditions to offset the tyranny of Sjogren's Syndrome , and cloudy conditions to keep me from getting sicker from lupus.  My lupus brain involvement gets worse with UV exposure.  It's really peachy, to not have my brain fried. So rain, sure!  Bring it on!

It's just that lately the pre-rain, or even just pre-clouds, have been so horrible for me that I  haven't been able to write all that much...because my painful, swollen hands "Just. Say. No."

I'm trying to plan out our upcoming move. And I don't have $ for movers, and this is really worrying me because I have had to face reality: I cannot pack anything up.  Even with my great blood work.  My hands won't do it.   They are on strike.  They don't care about the blood work.

So, so. Another non-fun thing that happened recently was yet another change in my psychiatric meds.  I've suffered from depression for decades, a condition which often goes with lupus.  More on this here: http://beepbeep.livejournal.com/1128077.html .

A while ago, I was on a high dose of a medication that has a short half-life and a nasty withdrawal syndrome (a syndrome to which I turned out to be very susceptible.)  So every time I had to take a dose of this med late, or miss a dose (like with insurance delays in working things out with the pharmacy--and I KNOW I'm not alone in having stuff like that happen!),  I became violently depressed, like to where I was afraid I might kill myself.  And, I'm told, I was very hard to be around.  So when my doc told me he thought I needed to go off of this med entirely, I agreed.

But as I've been decreasing this antidepressant, I've become more...depressed.  Kind of makes sense?  Added to this is the withdrawal syndrome, where every time I have to make my 37.5 mg "jump" downward, I have dangerous misery for up to a week--sometimes longer.  (Speaking of misery, when I originally was taken down an entire 150 mg at once...it was a living nightmare.)  The 37.5 jump is worlds better than faster reductions but still is a very harsh experience. I've very glad I'm only on 37.5 mg /day total, now.  There will be an end to this withdrawal syndrome, when there is nothing left to withdraw!

However, since I'm slowly getting more and more depressed, another med I take was increased.  This med is described as having some effect on depression.  I'm crossing fingers that it helps.  And crossing my toes.

I was also put on a second med to stabilize mood.  This one can cause weight gain...and what with having had estrogen-responsive cancer, and fatty liver, and left ventricular hypertrophy in the heart, and smaller lung capacity than I should have, and diabetes, and probably some other things I left out, I can't have any more weight gain.  (This is all aside from what obesity for so many years has done to my social life and my self-esteem.)  I haven't fought my way out of prednisone obesity by any means, but was actually starting to lose a little weight, finally, and that made me feel like possibly I might not die in five years from obesity-related problems after all.

Ok. I started the brand-new med on Friday.  It's Tuesday.  And I've gained six pounds.  I'm also swollen, have miserable nausea and queasiness as well as severe stomach pain, and am exhausted from waking up at night choking on whatever I had for dinner.

My long-standing reflux esophagitis has been a difficult case, complicated by good old obesity and also a large hiatal hernia, and I've had to take four omneprazole/day and elevate the head of my bed so my bed as treatments.  I hate doing this; my bed  is so unstable I feel a bit nervous. Oh, I also can't eat too close to bedtime, and...blah blah blah, more stuff.  All so I don't get reflux in my lungs, like I did once and had resulting pneumonia.  All of this means it could be a bad thing for me to keep taking a med that is giving me such GI problems.

Well, my psych doc is out of town.  I had to make an executive decision.  I left him a message.  None of this med tonight. I'm sorry; patient no longer complying.

Maybe the doc can work with my gastro or my endo, or another doc, or a bunch of them and come up with a way I can tolerate this drug.  And that would be fine with me, but for now it is going to have to be a NO.  What this NO will do to the depression, I don't know.

But, I woke up feeling emotionally better today, though exhausted from not getting to sleep thru the night.  I am sure it is that the withdrawal syndrome is starting to fade.  It is a good thing I was more together today than yesterday because I had to drive down to LA and back for my checkup with my gynecologic oncologist.  Because of the rain and slick roads there were some accidents on the freeway and this made the trip longer.  I am so tired I can't get out of bed now.  Dburr will bring a light meal to my bed...bless him.

So, nuclear, at last.  I hadn't forgotten.

I was assured that I don't have a change in the stage of my cancer or anything like that.  But because I had multiple tumors, the recommendation is for me to have some radiation.  This will be internal radiation and I've been referred to radiation specialists in Santa Barbara.

Sometimes I have a problem with showing people how I really feel because I've been through so much in my life that I'm kind of used to unpleasant stuff cropping up.  For example, my psych has trouble believing how severely I get depressed.  He said, "You don't look depressed."

And I know I don't look or act scared right now, either.  My first comment upon hearing the news was actually,  "I hope they (the radiation docs) take Medicare."  And the first worry I expressed out loud to anyone was about the damn copays I don't have the money for.

No, I shouldn't have to worry about every cent with all I go through in life, but I do.  It's like always having to look down a dark tunnel and hope a train isn't coming, and if I think about finances too long I just start to cry.  When I'm alone, that is.  I know that worry like this always makes me sicker but still, to look at me, no one knows that I'm about to collapse from a crushing burden of stress.

So, I don't outwardly show any fear of the nuclear option.  Bring on the nukes.  Take no prisoners.  Big C, you're not welcome here.

But psst...I wouldn't turn down a hug.

SSRI Discontinuation Syndrome

Oh, this topic is so interesting...just felt like blogging about it for no particular reason...riiiiight!

A few people I know have been wondering where the hell I have been the past 2 weeks or so. Let's just say that where I've been, you don't want to go.

I've been trying to function, despite having my brain basically in need of a long vacation at a hotel with padded-wall rooms, but I am certain I didn't fool everybody. At least 4 people let me know I was not acting like myself...which I appreciated, as it was done tactfully and gently.

The frustration was that I was not sure if I was believed, when I assured them I had contacted my doctor and asked for help. I actually did so twice. Now that I am doing somewhat better I intend to follow up and find out just what went wrong--that is, why I didn't receive help, and what system I could set up so that if I ever need help again while perhaps not being able to communicate so well, something would still be done for me...

A lot of you know what withdrawal from prednisone can be like. I personally have a bad history of being miserable from prednisone, in the myriad ways that drug notoriously has for making one wonder why God would put the cure for too much inflammation, along with intolerable, even potentially deadly side effects, together in one place.

Please don't be frightened of short-term courses of steroids, but those of us who have had to deal with them long-term (and remember, many of the medications for autoimmune disease used right now just weren't THERE when some of us where diagnosed somewhere back in the Bronze Age) can probably point to a part of our body and describe how prednisone or an equivalent somehow messed it up! Anyway, for me, the emotional lability and depression triggered by steroids is significant, and withdrawal from them is mixed with both physical and psychiatric symptom exacerbations. Lots of fun, NOT!

I recently had to go up on prednisone for my notorious post-respiratory-infection cough (when I was 7 I had the thing the entire winter which had my mother being told I would simply not live long), a treatment new to me for this miserable cough but which actually works. But then I was coming off of the high-dose prednisone just AT THE SAME TIME as when I had to:

(cue sinister music) withdraw from the drug Effexor.

This was just one of life's little coincidences that help one understand what "perfect storm" and "failure theory" are all about! (cue dark clouds moving in, now.)

Well, two weeks of hell, and not quite over. Just over enough so that I think I might actually sleep tonight. I also think I am speaking English and am doing so without pissing anybody off at the moment...and without babbling nonsense. I think. I think. I hope this is the case.

But my dose of this drug was only cut, albeit too sharply for me, in half. That means I'm still taking it. Oh my freaking God.

I've now gone from not understanding why a med that was working for my long-term problem with either lupus-induced or steroid-induced or mixed-caused (at this point I'm not sure the origin matters so much) major depression was being changed in dosage...to being grimly and absolutely convinced I should get off of the drug entirely. And I wonder just how that is going to be safely accomplished. And hope my doctor agrees with me! Because I'm going off of it, somehow. I clearly overreact to it or something, or that withdrawal wouldn't have been the hell on earth that is was. And still sort of is. It's not over. I still feel rotten, just more manageably rotten.

Admittedly, reading Wikipedia is not like reading peer-reviewed medical journals (then again who can afford access to those any more) but I found this, at http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome , to be very interesting re Effexor:

"Venlafaxine

Sudden discontinuation of venlafaxine has a high risk of causing potentially severe withdrawal symptoms. Even missing a single dose can cause symptoms of withdrawal.[25][26] The high risk of withdrawal symptoms reflects venlafaxine's short half-life as well as its effect as a dual uptake inhibitor.[20] Discontinuations have a tendency to be significantly stronger than the withdrawal effects of other antidepressants including the tricyclic antidepressants, but are similar in nature to those of SSRIs with a short half-life such as paroxetine.

Symptoms of discontinuation are similar to other antidepressants including irritability, restlessness, headache, nausea, fatigue, excessive sweating, dysphoria, tremor, vertigo, irregularities in blood pressure, dizziness, visual and auditory hallucinations, feelings of abdominal distension, and paresthesia. Other non-specific mental symptoms may include impaired concentration, bizarre dreams, delirium, cataplexy, agitation, hostility and worsening of depressive symptoms. Online help groups consistently mention withdrawal from Effexor as triggering dreams of a particularly distressing and hellish quality.[20][25][26][27][28][29][30]

Electric shock sensations have also been reported[26][29] with many patients describing the symptoms as "brain zaps". It has been suggested the sensations may represent an alteration of neuronal activity in the central nervous system.[31]

Studies by Wyeth-Ayerst, the maker of venlafaxine, and others have reported severe withdrawal cases, including withdrawal as the presentation of a stroke, as well as neonatal withdrawal (neonatal withdrawal has also been reported with paroxetine, fluoxetine, sertraline, and citalopram). In some venlafaxine withdrawal cases, successful discontinuation was eventually achieved by the addition of fluoxetine, which was later discontinued itself without difficulty."

It is easier to say which of the above symptoms I did NOT have, since I suffered most of them and pretty severely.

1.
I do not know about my blood pressure.
My heart rate was noted by a doc as being too fast during this time: 110

2. I did not have auditory hallucinations.

3. No stroke.

4. No neonatal effects; didn't deliver a baby to have them.


--

I've gone off of SSRIs before and did not have anything like this happen, but I believe they were ones with a much longer half-life. I discontinued Prozac (fluoxetine) years ago due to headaches and then later went off of the replacement, Zoloft, due to diarrhea, exacerbation of restless leg syndrome and nervousness. I still take trazodone at bedtime for sleep betterment (although now I'm wondering about getting rid of it as well on general principles!) I discontinued Celexa, which had worked for me for many years, simply because it no longer worked, and replaced it with Effexor.

It took me a long time to find the dose of Effexor which seemed best for me and that turned out to be a bit high at 300 mg. But I had some prior symptoms while on Effexor of going oddly rapidly into depressive states, which led my doc to believe that this was not the best drug for me and that it could even be dangerous.

And I now totally agree with him! because a withdrawal like that means that I would be in big trouble every time Medicare Part D played its usual little game with my med renewals! ("Oh, your insurance isn't covering that on third Tuesdays...you'll have to fight for it...oh you'll be out of it soon? So sorry")

Right now I am completely exhausted, mildly depressed, mildly nauseated, and a bit scared. I also feel very alone. I'm not sure why the latter.

And I feel kind of like I'm drowning...because I don't know as much about psychiatry as I do about rheumatology, and I am somewhat overwhelmed now that it appears I had better start learning.

Honestly, I'd rather be at the movies or something. I kinda sorta remember going to movies, back in the day. I want to see a Disney cartoon or maybe a musical. Something really really retro and safe.