4.26.2010

My romance with my migraine medicine has officially come to an end.
I don't regret a minute of it, but it's time to call it quits.  I wish I could make a clean break of it, but I have to be weaned off, the same way I was weaned on a few months ago.

At first it was wonderful.  No headaches of any kind.  I woke up pain free, stayed the day that way, and fell asleep comfortably.  I slept through the night.  I had a few months of normal life.  It was amazing.

It was great, now it's gone.

The side effects?  Horrible.  They started a bit with the 25 mg dose, became a bit bothersome with the 100 mg dose and when the 100 mg dose proved ineffective for my headaches the doctor suggested that we up it to 150 and assured me that the side effects wouldn't change and would most likely just level off in another month.

Wrong.

The normal ones, the ones most people get- dizziness and fatigue and tingly hands and feet- are there, sure.  Getting worse by the day.  But the sore and bumpy scalp?  The hair loss?  The visual disturbances?  Menstrual irregularities?  Mental blocks and physical slowness?  Insomnia?  Joint pain?  The other ones that are supposed to only happen to a handful of people?  Check, check, check, check, check, check, check.

Depression and anxiety are listed as symptoms.  I can see myself slipping into those two cubby places if I'm not careful, out of sheer exhaustion and frustration.

I'm especially tired of the visual disturbances.  You know that movie trick that all the horror films are doing, how everything moves skittish like spiders and you aren't quite sure what you are seeing even after you've seen it?  That's how things look more often than not.  Even photographs.  It's making driving difficult.  And walking.  And living.  Everything is very trippy.  Straight lines don't exist anywhere anymore.  Nothing is still.

I can't sleep.  Partially because the headaches are back and my pain tolerance is nil because I let my defenses down for those few months.  Partially because insomnia is a side effect of this medication.  Partially because I'm a natural born insomniac.

April is the worst time for me arthritically speaking and I'm sure this drug is making it worse.  The air is heavy and moldy and chilly but it swings hot every few days so my joints don't know what to make of it.  It hurts.  I don't take any prescription medication because I have found that I can better manage my pain and rheumatoid levels through diet and exercise (plus- holy crap side effects!  you've never seen side effects until you've seen what arthritis medication does to a person) but the fatigue and weakness that this migraine medication is giving me is wearing me out so badly that exercise is hardly an option.  Plus joint pain is listed as a damned side effect.

The medication suppresses the appetite and makes everything taste like crap so it's all I can do to force food down my throat to keep weight on.   I feel like I'm only eating for nutrition and to keep my weight stable these days so no one questions my health or sanity.
That's not fun at all.
Eating is supposed to be enjoyable, not a game to keep the needle above a certain number on the scale.

This medication also suppresses the urge to drink alcohol.  Not that it's necessary to booze it up on the regular, but I miss enjoying cocktails with my friends.  Now I only take a drink to look normal while I try not to let my face or body contort into a strange position while I listen or allow my mouth to stutter in the off chance that my brain comes up with something half intelligent to talk about and the synapses that work to push a thought from my mind to my mouth are firing half correctly when it's my turn to speak.

My scalp feels bruised, like my hair has been pulled into a tight ponytail.  My jaw feels clenched.  I wonder if my face looks strained.  It feels that way.  My hair is falling out in clumps.  I have tiny pimples all over my head, save for my face- thank all that is holy.

I can't do math.  Even simple things like telling time or reciting a phone number.  Counting money?  Forget it.  I'll put it on my MAC card.  I can't come up with the right word.  Or the wrong word.  Any word.  My reading comprehension is for shit.  Forget following directions.  A recipe.  Nothing.  Letters jumble.  Words jump.

Dyslexia.  Is that listed in the package insert that came in the white paper bag?
d's are b's and p's are q's and L's are 7's and 6's are 9's and N's are Z's.

dogs are gods.
soft course they care.
saw there ever airy dough?

I've enjoyed emailing back and forth with Christina who is on the same medication and we don't edit our emails, so lots of stuff looks exactly like what I just typed up there if I wasn't super careful, but it's all good because we adage the same bandage.  spark the same langostino.  spank the same slang.  speak the small strut.  speak the same language.

See why I'm done with this medication?

But those few months?  I wouldn't trade them for the world.  I knew the risks, the possible side effects, but I was desperate. Thirty years of crippling migraines makes a girl take a chance on just about anything.

So what if I couldn't do math or I couldn't read or I wasn't so fast on recalling what the name of that thing next to that other thing was.  And opossum everything side wright got typoed like orville.  I got to be a normal person for a little while when I wasn't trying to be creative or productive.  I didn't hurt so bad that I cried at the grocery store, calling my husband from the parking lot in a panic because I didn't know what else to do because I couldn't see well enough to dial 911.  Am I dying?  Or is this just another headache?  How can I be sure?  I didn't have to tell my son I couldn't play anything other than racecars because I couldn't stand up.  I didn't miss work because of pain so bad that I prayed for death because I just couldn't take another minute of hurting like that and how can I be a decent mother anyway if this is how I'm sentenced to live so I may as well die on the floor of my bathroom, waiting to see if I puke again or if my belly is finally empty, feeling sorry for myself because there is blood running out my ear because it's cocked lower than my nose and throat.

Headaches are no joke when you've got them bad.

Back to the doctor on Wednesday to tell her this isn't working for me.  Maybe there is something else I can try and maybe there isn't.
At least I had Paris Topamax

35 degrees {comments}:

Zip n Tizzy said...

Oh Lora.
All I can say is I'm thinking of you and I hope she finds a solution.

Eric's Mommy said...

I'm so sorry you are dealing with ALL the crappy side effects. :(

slommler said...

I too suffer with migraines...migraines from hell! So I know your pain. I only get some of the side effects with the meds that I have. So I tolerate them to keep that pain away. I sure hope they can come up with something that works for you. This really sucks!!! Prayers are being said for you right now.
Gently hugging you
SueAnn

Kelly @ Dare to be Domestic said...

Lora I'm so sorry you're having to deal with this. It sounds miserable but I'm sure the headaches were just as bad. I wish there was something I could do :(

Poolside with the Girls said...

I'm so sorry Lora. I just can't imagine. Just very sorry.

Amanda said...

I'm sorry it didn't last for you. I have some of those side effects. The cognitive, the joint pain, insomnia, and fatigue, but they're no worse than when I'm not taking the topomax. Maybe that just makes then symptoms.

I love that you still call it a MAC card. Reminds me of my aunt.

Leah Rubin said...

Yikes-- you're on the right path-- get offa that stuff, and try something else! You deserve to feel wonderful. It's a pain to have to try different meds-- I went through this for IBS, nearly went down the rabbit hole with one... But my doc is great, and finally solved the puzzle that is Leah's gut. May you have such success!

Scott Teel said...

You've probably already tried acupuncture, yes? I haven't yet, but I hear it works on a lot of things for a lot of people.

Theresa Milstein said...

That's awful. I hope they have something for you that doesn't make the side effects worse than the headaches.

Keep us posted.

anniegirl1138.com said...

Ah, migraine prescription meds ... didn't do a friggin' thing for me except for make me feel as though I was inhabiting a body that wasn't my own.

I rarely get migraines anymore. I don't know it is the changes to my diet or the change in climate or the near zero level of stress I enjoy now. But all I use is the Excedrine Migraine stuff and occasionally I pair it with icepacks.

However, I am still slightly dsylexic and can't do math. I am going to assume that it's unrelated.

Sorry that you are back to square one. Migraines bite. Oh, just thought of something. I am perimenopausal. The onset lines up with the diminishing migraines. Hmmm. Food for thought. Feel better.

Heather @36 balloons said...

well shit. you tried. kinda bummed that there will be no more talk of PB and vajayjay sandwiches. love to ya...

Sara R said...

kev gets them bad - booooo

acupuncture?

CecilyK said...

There's a reason we all call it Dopomax. I had exactly the same experience with it, actually, right down to the weird hair thing. I don't miss it.

I don't know if I mentioned this to you, but I've had great success with high doses of Melatonin (like, 10mg a night, not the standard dose of 1-2mg). This has helped me tremendously, and I have no side effects at all. Plus I'm sleeping.

But it's easy for people to dismiss the agony of chronic migraines. It's truly a chronic pain condition. I hate it.

Pamela said...

migraines are the worst.
much love.

Pamela said...

much love to you, not the migraines.

susan said...

What a pain, both figuratively and literally. I am so sorry. I'll join in with everybody else sending you lots of good wishes and will be keeping my fingers crossed until you find the perfect combination of whatever it takes to make you all better. God knows I don't use them to type blog posts anymore...

Love you.

Andrea (ace1028) said...

OMG. I am so sorry to hear how awful this has been. I get the occasional migraine from light sensitivity, but when I was pregnant I had them so bad I was only able to help relieve the pain by crying. So unless you want to cry every time you get one I will wish for relief for you in some other way! I see some posters have mentioned acupuncture, and since it has saved me from so many ailments, I'll suggest it, as well. Good luck, mama! Talk soon!

RuthWells said...

Oh god. Sweetie. I'm so sorry. Sending hugs.

Holli said...

That sucks. I sometimes have to do this with my diabetes meds. I'll find a new one that I love that keeps my blood sugar low so i can eat candy all day if I feel like it.... and then i can't handle the side effects of it. The hair loss, the mood swings, the weight gain (wait that could be from the candy...) It sucks. anyways...)

Silly Swedish Skier Says So said...

Jesus, you're tough! I'd never last through those side effects. I'm a quitter. Glad you got to enjoy a short stint of normalcy. Sorry it didn't last.

Scott Teel said...

I should've mentioned: many insurance plans cover acupuncture now, also.

The melatonin suggestion is interesting, it's not too pricey. I was told it would help me sleep. Not really sure if it worked for that or not.

sammy said...

shit. sorry to hear all what you are dealing with.

i have SEVERAL of the same complaints just not to the degree you are experiencing. well except the joint pain. that is supremely compounded in my day to day activities. i also have the insomnia and am actually about to go to one of those sleep center things.

my wife does/did have the excruciating migraines though. they come and go and she also had to get prescription level medicine. they had terrible side effects for her as well.

Lucy said...

Oh, sweetie, I can't even imagine dealing with migraines. I have heard they are just horrible.

I take Topamax, 2 25mg tablets at night. I take it for something else, not for headaches. It took a year before I tasted food again, it sucked, I lost so much weight and my husband would come home and asked if I remembered to eat. I still don't have my normal appetite. BUT, I never knew that it caused focusing problems. I lose my train of thought a lot and I just thought I was getting old, (lol). I am only 44years old but I thought, "hey, maybe I'm losing it faster" (lol). Sometimes, I am in the middle of a sentence and I just can't finish my thought, it is sooo weird. Oh, well, maybe it is just me.

I really do hope your doctor finds something for you. Living with pain is extremely hard and you need relief!!!

kdacjbrua said...

Have you been evaluated by an interventional pain therapy dr? They can do procedures to help with chronic migraines such as occipital nerve blocks and botox injections (won't help with the wrinkles, unfortunately!) If you haven't, that might be a way to be pain free (or at least be in less pain) without the drug side effects...

HG said...

Oh sweetheart - there's nothing to say but I wish I could make it go away.

Jen said...

I'm so sorry that you have to go through all of that/this stuff. I hope the doc can find something that works for you without all of the craziness. Take care and I'll be thinking of you.

kateyleigh said...

my prayers, my good vibes, my hopeful thoughts... they're all yours. please let me know what the doctor says. i refuse to believe there is not an answer.
have you tried acupuncture? not saying it will make it all go away, but i've seen some really positive results with some members of my family.
keep me posted... this has to get better for you.

thelocalsloveit.com said...

I hope you find something that works for you and soon.

Kelly said...

I am SO sorry. Fucking headaches. And fuck that no meds seem to work long-term. I'm going to send you an email when it's not time for me to pick up my youngest from preschool.

Love you.

Mommy D said...

Ugh, Topamax is a BITCH. I've been riding the Imitrex train for a bit, but the last time I took it I managed to throw myself into a panic attack from feeling like I couldn't breathe.... My normally borderline dead BP was pushin' the 190's / 130's.... I thought I was going to die.... Sometimes the drugs are worse than the affliction... Hope you and the doc can find something that will work for you :)

Jill said...

I'm sorry you have to endure such a painful difficulty.

It sucks to have issues with medication. Ick.

Maggie May said...

Lora I read through this and am wondering what kind of treatments you've been through. You have cluster illness- arthritis, migrane, and you had cervical cancer. This indicates there is an essential imbalance in your body that needs to be dealt with. The kind of intense nutritional and supplemental program that worked so very well for me ( ending years and years of chronic headache, muscle pain, IBS, swelling in face and hands and tongue, throat pain, numbness, etc. ) would be wonderful for you to try.

I did a few years of research and also did a personal consultation with two experts whose books I had read. I would love love to help you in any way if these are things you are interested in.

Feel better beautiful.

Salty Miss Jill said...

Well, you certainly know how to have a good time.
I hope you feel better soon, sweetness. :)

Lisa - Fine Sweet Life said...

I am down to two a month. Can't see the hand in front of my face most times. I am the ostrich of the house. If you come over and my head is deep in the sofa, that is why. i rather give birth!

teri said...

i take topomax too. 75 mg was my magic number, where the headaches toned down but my memory didn't go away completely. I hated the memory thing so I stopped after 6 months but then the headaches came back. So after a month i went back on and, oddly, I stopped having memory problems the second time around. at least i think so. maybe I just can't remember i'm having memory problems. LOL. anyway, try going off and back on at least once. that's not scientific; just a thought.