Migraines, redux

Don't they suck?  I know my fellow migraineurs agree...and many lupies are prone to them.  Right now I've got the blinding pain and some nausea threatening to become severe nausea.  I took a Frova and hope it kicks in.  Right now I've got to do the dark silent room thing.  So much for my plans for today...unless Frova does the job.

Dear Stubborn Five-day Migraine,

I will enjoy the Christmas season despite you.  I've certainly ignored far worse health stuff at Christmas.  You are just amateur misery.  Suck it up.

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.

Want to do a blog update, but...yukky MIGRAINE. Again!

I've missed a lot of doc appts. recently due to the long recovery period for my surgery.  A total hysterectomy with bilateral salpingo-oophorectomy, to be precise!  I'm working on week 5 now of the recovery period.


But now I am going to have to contact my neurologist.  I've been having some horrific migraines which concern me, since it looks like the Lyrica I'm taking every day isn't working as well as it once did to reduce migraine frequency/intensity.  For example, I remember I had a horrific migraine starting the day before my birthday, in October, which lasted many days.  

Now I'm having more of these high-intensity migraines.  I've only had a few days migraine-free since the day I had my surgery, on Jan 22.  And I have no idea why this is happening. I do know that frequent migraines may be actually a serious problem.


Often if I take Maxalt (as long as my insurance is paying for it; I can't afford it on my own of course!) I get some immediate relief. I do better on Maxalt than the other migraine early-response medications. I can often knock out the headache if I take one Maxalt, then another a half hour later, and if necessary one more if symptoms reappear.  But I certainly don't obtain enough of the pills to be doing this daily.  Also, this new round of migraines respond to the Maxalt for awhile... but then return.  Boomerang.


NSAIDS do nothing for my migraine pain and most of them are contraindicated for me anyway due to severe GERD.  GERD complicated by a large hiatal hernia (inherited maybe?  my slender mom has one as well), and GERD nasty enough to have given me pneumonia before. The  only NSAID I can tolerate,  Celebrex, I am already taking for lupus arthritis.  I was taking Vicodin for migraine pain, but now that I know I have a liver problem I am concerned about taking too much Vicodin because of the acetominophen in it.  This means I'm actually better off with hydromorphone, even though I have several of the "discuss with your doctor" list of conditions for the drug.


My neurologist kindly takes the trouble to get hydromorphone for me.  However, the migraines I'm having now seem to need more of this medicine than what I was taking in the autumn.  I need more medicine in order to get the pain down to a level where I can at least minimally function.


I'm lucky that my mom happens to be staying with us right now because she has been helping out with my recovery from surgery.  For example, she is now the official taxi driver!  Usually I play that role since Dburr's vision prevents him from driving.  But I can't drive while taking hydromorphone, which means that usually I have to tough it out when I have migraines at times when we need to do important errands, or when we have doctor appointments (most of which are in other cities!)  

However,  I could never have driven anywhere with these particular migraines, even while, of course, going without pain medicine. The migraines have been accompanied by vision abnormalities, photophobia, sound and smell sensitivity, and sometimes dizziness and nausea.  

But one really odd thing is that the bizzare "half-vision" mystery thing I often get in my left eye with my migraines is not showing up at all in the current batch of headaches from hell.  A symptom I can't say I miss at all!


Sadness. I'm so frustrated.  I'm finally able to be up and around a little bit. I could have started to catch up on email...and blogging...and special projects--at last. Even though I'm stuck in bed a lot.  I do have this computer, thanks to Dburr, and I would be crushed without one! It is my lifeline when I am sick, which is too often, IMHO.  But the headaches I'm having incarcerate me.  In fact, looking at the screen just for this blog entry has made the pain worse, so I now need to spend some time yet again in total boredom.  Prison. A dark, silent, lonely  room with an ice pack on my head for company. Sigh.  


My life, right or wrong!  Actually, though, I'm  very grateful to HAVE life.  I'm just acting a bit weird  right now because it feels like someone took an ice pick to my head without me even seeing them do it.  If I ever find the one who did it...well...I guess there's nothing I can do to them! Rats! But it's Lent, after all.

Migraine. From. Hell.

OMFG.  This is a Big One.

Waiting for Godot, I mean surgery date

I've got one of those migraines of major doom.  It started yesterday.  It responded to Maxalt for some time but then returned.  After three Maxalts I realized it would just keep boomeranging.  I then took hydromorphone for the pain, as I am instructed to do.  With my liver pain and liver enzymes elevated I didn't want to try Vicodin first as I usually do, since the liver doesn't care for the acetaminophen in Vicodin.  People forget how hepatotoxic Tylenol can be...

I'm trying very hard not to take anything narcotic today because I really need to go to the post office to pay for my support group's PO box before year-end, pay a bill at the bank, and get some food that I can eat without totally spitting on one of my medical diets.  But I haven't had a break in the migraine action long enough to feel safe driving even sans pain meds.  I've been getting vertigo along with the nightmare pain.  This thing basically has got to go.

Anyway.  When asking about my preop appt. I found out my surgery is going to have to be pushed back due to a change in the doctor's schedule.  So I no longer know my surgery date.  I will still have tests in LA on the 2nd.  I know the surgery will be at the very least a total hysterectomy with ovaries et. al. removed.  I'm hoping it can be done laparoscopically due to my poor wound healing from immunosuppressive treatment for lupus as well as the diabetes.  The tests on the 2nd will have some bearing on whether this is possible.

I really want to be held and kissed and comforted.  But I've always been really stoic, at least on the outside, and I don't know if people really know that inside I'm an emotional vulnerable lonely gullible soft thing.

On the outside I can joke about adversity (having become somewhat used to it) and kick ass when I have to (an outer personality change that was painful and took a very long time but was totally necessary for survival starting with fighting for the diagnosis of my mystery disease, not hypochondria but: lupus.)

I didn't realize I had quite so many of the risk factors for this endometrial cancer of the uterus.  I knew I was high-risk but not, I guess, megahigh risk!  It all has to do with how much exposure to estrogen one has.

My collection of the risk factors include:  starting my periods before age 12, never having been pregnant, irregular or possibly even no ovulation after starting Cell Cept for lupus treatment in 1997, diabetes, obesity (thank you so much, prednisone.  Oh yes, you are life-saving in lupus, but you come with quite a price in side effects), possible PCOS .

I'm really glad my new gynecologist did a biopsy of the uterus instead of relying on my normal PAP smear.  PAP is for cancer of the cervix, not the endometrium of the uterus.

Why won't this migraine GO AWAY?  I need to do laundry and answer a backlog of email.  This is so frustrating.  Vamoose, migraine!  Abracadabra!

Things I Hate, #1038485

Migraines.

Oh how I hate you, migraine.

People say I never complain about them. That is not really true. I don't complain often, but I do complain...to the poor guy who lives with me, and sometimes to doctors. But since I know that I have to endure them, no point in complaining, really.

But that doesn't mean I LIKE them.

I hate the pain.

I hate the "down time" enforced upon me.

I hate the nausea.

I hate the interference with my vision.

I hate the vertigo.

I hate the sensitivity to light, sound, smell.

I know they can show up with lupus. I don't exactly like lupus, either. But again, no point in complaining. Just an occasional vent once in awhile to let the emotions out.

Reminder to Self

Put today in the Headache Diary for my neuro.

At least he cares when I get these nauseating, blinding migraines.

I had so much I was looking forward to doing today and it is just. not. fair.

Sigh!