Gaps
Anyone who has dealt with chronic pain knows that eventually, you hit a wall. By the time I was seated in my neurologist’s office, silently diagnosing him with GERD, I was in such sorry shape that if he’d said, “what you need to do is grind a ballpoint pen into your eardrum until you hit your brain,” I’d have fought him for his own pen and done it right then and there. Anything to get rid of that pain.
I’d already been on a dose of something I called The Max, or occasionally Dope-a-Max and it had lost it’s efficacy. As we decided to increase the dose, my neurologist warned me that the higher the dose, the more likely it would be that I’d suffer “cognitive impairment,” which, I don’t need to tell you Pranksters, was the last thing I could have used.
Alas, I went up in dose, accepting that I would probably turn into the Aunt Becky equivalent of a gigantic vegetable, hoping that I’d at least be a kicky exotic vegetable like Chinese Broccoli (with stylish hair) or something.
I bought a notebook to jot down the things I’d previously relied upon my memory for. I accepted that I could no longer just “send an email” without having to look up the address to ensure I wasn’t sending it to the wrong person. I lived in a fog, existing one moment to the next rather than planning for even a couple of days into the future.
I was miserable. Probably more than I’d let on.
The headaches were manageable for awhile, but the gaps in my brain’s functioning made me frustrated and sad. I missed being able to say, “oh yeah, April 18, that’s the day I’m going to Take Over The World, Like Skynet, With Better Hair.” I missed being able to tweet at someone without having to copy/paste their Twitter handle.
Once The Max stopped working to keep my headaches at bay, I switched to something else, hoping to regain some of my cognitive function, as well as manage my headaches. I’d done over two years with The Max, and I was tired of it.
I’d been told that the side effects of Dope-A-Max were reversible so I expected to slowly regain my ability to manage the tasks that used to leave me frustratedly crying at the computer.
And who knows. Maybe they will.
But right now, I feel the gaps in my mind are so large that you could drive a semi-truck loaded with watermelons through them.
Mmmmm…watermelons….mmmm.
What were we talking about again?
I’m so so sorry. I wish there was an easy answer for you.
I am so sorry you are having to go through this. I completely empathize with you and I will keep you in my thoughts. 🙂
WOW. I thought this was going to be some kind of expose on the horrors of Gap stores. I was already to boycott as soon as Aunt Becky said the word GO.
Instead, my heart breaks for you, lady. I can’t relate to what you are feeling, but I will do my best to send some good juju and hope for the best.
Hang in there! You have made it over many hurdles in your life already, I know you can keep going. <3
I totally understand the chronic pain issue. I was just telling a friend this weekend that I either have to deal with my pain meds making me loopy (and ooooh so chatty…I am quite talkative when I take them…as in diarrhea of the mouth talkative) or I have to deal with the fact that I turn into a complete moron when I’m in pain. I can’t remember ANYTHING. I can’t string words together. I probably look like a friggin’ dope head when I’m NOT taking my pain meds. It’s a horrible cycle. I worry about depending on these stupid pills and when the pain creeps in I think, “I can deal with this; I don’t need my pain meds right now.” And, then all of a sudden, BAM. My whole body is on fire with pain…I equate it to a full-body migraine. (Just as a reference: I have rheumatoid arthritis.)
I’m glad I’m not the only one who keeps a notebook. I’m constantly jotting stuff down because I feel the same way…the gaps in my brain are unreal. I will ask my husband a question and just from the look I get from him I realize that I have already asked him the question…and he has already answered it.
I’m going to add watermelon to my grocery list now and send you “feel better” vibes while I eat it!! I shall name it Aunt Becky.
OMG….I totally know how u feel… I also have chronic pain and take pain meds daily for it…When I take them I feel better, but cannot remember sh*t. When I don’t have them, I am in horrible pain and am suuuuper grumpy…what choice do we have ?!
I’m so sorry to hear of your struggles. I know of your frustration, as my mother was diagnosed with Lupus last year and her mind is full of holes too. I hope you have a strong support team of family and friends to get you through this.
I feel you on this one, Aunt Becky. At 24 I wonder if I will end up addicted to narcotic pain killers like my mom, because the pain is so awful and every day there is a new ache or pain somewhere. I wonder if I have to live like this until my body gives up and dies, or will my sanity not survive it and I end up killing myself. What’s worse, the doctors would rather shove pills at me than get to the bottom of things and FIX me. But, I wouldn’t be able to afford it if someone wanted to fix me. Blah.
I’m sorry to hear that! I know what it’s like to not be able to remember ANYTHING anymore. I was that way on one med… Couldn’t even remember to shift the truck into park before I tried to turn it off and get out. Hope you find something that works well for you!
You only need to remember you are Aunt MotherFucking Becky.
Ditto to what Chris said. And we love you. Gappy brain and all.
Sweet Baby Jesus, do I know what you mean. Currently (as in, while I’m typing), I’m on vicoprofin. I have such powerful cramps each month that I’m pretty sure I should rate an epidural. The codeine often makes me puke-y and/or triggers a migraine. Then, I get reactions from the migraine meds. I’ve tried a whole buncha shit for the cramps, and am SERIOUSLY considering a hysterectomy. Turns out my grandmother had one for the same reason. AWESOME. But since my brain is actually busy doing the cha-cha right now (thank you codeine), all I can really think about is these BBQ chips next to me. MMmmmm. At least there’s that, well, until the vomiting starts. Hope YOU feel better too!
It must be maddening. {{{Hugs}}}
Sadly I feel your pain, I too take the Max for my migraines along with a cocktail of other drugs that steal my brain. And I literally have forgotten my childrens names and birthdays. I was filling out paper work for insurance and I could not remember my daughter middle names and my sons birthdays. I cried for an hour.
I do so hope the gaps come back, because I need them to for you so I know they will for me. Yeah I’m selfish like that. Ha Ha I kid, I want them to for you because I know the frustration and sadness of not remembering anything.
I feel for you Aunt Becky and I know what you go through, while this is my first time hearing about gaps, I’m familiar with fibromyalgia, carpal tunnel, DJD and a bad case of eczema. Too familiar. Pain is a constant in my life. From the minute I wake to when I go to sleep, I hurt. I usually keep it under my stilettoed heel and the rest of the world, barring those especially close to me, never even now it hurts me to be. I hope you get your watermelons and find a way to keep the pain out. Its a daily battle Aunt Becky, but God wouldn’t put anything on you that he thinks would break you. He made you and knows your strength. xoxox Sheena
I suffer from Migraines as well and had to turn to massage therapy because I has having them daily while my husband was deployed. The Dope-a-max was giving me strange side effects, and once I ended up in the ER I knew it wouldn’t work. Migraines suck so bad, I hope you find some relief!!!
I was on the Max for almost 2 years. It had me falling asleep while driving, REALLY slow and foggy thinking which is not good for a trial attorney and some other lovely side effects. Then, it stopped working and I went on something else. I had to go off that something else in order to get pregnant with my son. I researched EVERYTHING to naturally treat the almost-daily for eight years migraines. In the end, I did a candida cleanse, tried to eliminate most chemicals from my diet (processed foods) and NO artificial sweeteners, ever. I also went to a chiropractor for adjustments. I truly believe the diet made the most difference, but now it’s 5 years later and I rarely get a migraine. When I do, I’m able to treat it with OTC meds, which wouldn’t have even come CLOSE before.
I feel for you. I really, really do.
I know we talked about this a bit when we chatted. I’m sorry you’ve had to increase the dosage. I really hope it helps, though. No one should have to live in so much pain. *hug*
While my migraines do not approach the length or severity of yours… I feel you. I’m sooo sorry that you’re having to deal with this! The whole girlie side of the family (my mom’s female relatives, in other words) are all migraine sufferers. I’m sorta glad my baby-to-be is a boy, cuz… they are the suck. Driving a pen into my ear is the LEAST of the things I would do to make one stop. I just hope you find meds that work without screwing you over because you definitely deserve it. Uh, deserve the “no pain,” that is… cuz… oh, hell, you know what I mean!
Just started Cymbalta today for my anxiety/depression, but also hoping it helps with the pain issues a bit. Fingers crossed. The Max is a route I don’t want to go down. Lyrica was enough of a nightmare.
I love that you can find the humor in practically every situation. I love your perseverance. I love your determination. I hate that you have to go through this. I’m sending a cyber head/face massage your way.
Hey Becks,
WOW you just wrote a disturbing account of your very real life. Thank you for that. As you know I’m in chronic headache/back pain and I’m currently refusing mind altering meds. This is partly due to my addictive personality but also because my Gaps are huge enough as it is.
I can relate totally to the fuzzy moment by moment life, I’m in it now. Without my iPhone reminders I wouldn’t be able to do much 😉
I do so hope those clear up for you. Is there anything in the literature that says the cognitive issues might be permanent, or is it just a matter of time? Also, If you’re trying to create new neural comnnections? Omega 3-6-9 oils will often help give your brain what it needs to do that. (Grandma was RIGHT – you DO need cod live oil!)
I on the other hand am having the “slowly lowering estrogen of peri-menopause” brain gaps, and these are just going to get worse. I have had to describe nouns when I just couldn’t remember the worda-mah-thingy for them… like “let’s take the…. thing that’s like stairs but goes up and down by itself.” “Um, do you mean ‘escalator,’ Varda?” “Yeah, that’s it!” Damn!
Whilst The Gaps = a distinct lack of win, they do not mean that you are made of FAIL, Aunt Becky! Who but someone made of utter win could inspire such a team of (often pain-filled, it seems ) Pranksters?
I think you feel my logic.
My own tale of woe involves narcolepsy, narcolepsy induced by delicious Fentanyl patches. By delicious I mean that they bring some relief from my crazy back/pelvis/hip pain with their magical hourly release of opiates, not that I bake them into cupcakes.
Anyhow, I guess in my special and rambling way I’m trying to say sorry about your gaps and I hope you find magical meds that work for you without stealing your hot, spicy brains.
That sucks and I hope the gaps fill in soon. Until then, we can have lots of fun. Love you AB.
That completely sucks.
I am so sorry. I couldn’t tolerate The Max, I had some of those rare side effects they don’t even bother to warn you about. Evidently I am allergic to that entire class of meds. Nice. Currently I sit with an ice pack on my jaw because of the total lack of anything I may take for pain (thanks again hubs for accusing me of drug-seeking to try to take my son away…) *shakes fist* *mumbles curse about giving him pain for the rest of his life that no narcotic will relieve*
~Ahem~
Hope the gaps fill in soon!
Also, if it’s any consolation I just discovered I have not 1 but 3 appointments for tomorrow at 9:30 so I must move two of them. Sigh.
Yep it sucks My mom is on the max and hates it. It gives her massive migraines but if she doesnt take it she get seizures. so i bet youll be glad to off it my mom also holes that you can drive semis through she uses a notebook all the time to help her as well
I’m so sorry Becky. If it is any consolation it probably won’t be too long before you at least start to see some improvement in your memory etc. My daughter (12) was on this as one of her epilepsy treatments, it didn’t do any good so it was stopped for the very concern you mention. 12 is already severely learning impaired, about 2 years old mentally, so we didn’t want to make it any worse.
It will get better, it will. It just might take a little time.
Chin up.
Lynn
Becky, I am so sorry you are having to go through this. Have you ever tried acupuncture? A friend of mine gets regular treatments for her migraines, and it has helped her a lot. I don’t have migraines anymore (knock on wood), but I do see an acupuncturist for other issues, and i love it. Just a thought.
5months off my Topamax with severely debilitating migraines I’m about ready to jump or something. 5months ago I was on 3 preventive meds for my migraines and when I became pregnant I had to stop them all. My entire pregnancy so far has been a miserable painful blur. I know precisely how you feel. I’m looking forward to getting back on all my meds!!
i’m sorry for you. I’ve been on meds for 20 some odd years and i’m incredibly forgetful. However, at least i don’t have headaches like you seem to; just mood swings.
Good luck with all that.
I am so sorry. That just sucks.
Another victim of The Max, here, though I was being treated for an annoying full-body tremor. I made friends with The Shakes, rather than The Gaps.
I love you a hundred, Aunt Becky, and hope you find just the right mix of things to make you feel better. Not just the pain, but the brain.
MAN. That sucks. The shakes are now showing up with the Depakote I’m taking and holy FUCK that sucks.
You probably have already heard about this, but… have you heard about biofeedback? I was reading up on it today (I work for an insurance company that covers it) and it sounds… weird, but good.
*hugs*
Have you explored massage therapy, chiropractic, acupressure/acupuncture, or reflexology? If you find the right professional, sometimes one or more of these things can work wonders. Love your blog, hate your pain.
Mmmmmmm. Watermelon.
I was on the Topamax crap for my lyme’s headaches…I became a super psychotic woman full of rage…EVErYoNE was freaking afraid of me…besides not being able to finish a sentence…and I never got the “good ” side effect of weight loss….NEVER AGAIN!! Best wishes to you and I hope you find relief soon, along with all your big girl words! 😉
Oh also, not sure how you feel about it but if you’ve tried plenty of preventives and a few abortives, you’d be an excellent candidate for Botox! (Therapeutic Botox, not cosmetic) just something you might talk to your neuro about. I have seen many a migraine sufferer have awesome results from Botox.
Thinking about you (when not wacking my head on the countertop and slashing my wrists over the outcome of the elections here in Canada) and hoping you find something that works better for you.
(((((HUGS)))))
Oh my, sing it. Your gaps are my gaps.
Perhaps synch your calendars and to-do lists between your smart phone and computer (so you don’t forget to update one to match the other), omega-3s, and work on those embarrassing excuses?
Anticonvulsants be damned, whatever purpose they’re prescribed, for all of their cognitive, psychomotor, and whatever other side effects. “You just have to cope with the cognitive dulling” during law school? Seriously unhelpful. Too bad they are life long for psychotropic purposes.
Here’s wishing Aunt Becky high efficacy and tolerable side effects in all future medication adventures.
And f*** the rock and the hard place!
Dear Auntie Becky,
I wish Vicodin worked well for you and you could have it whenever necessary. Some doctor are fucking Nazis. Why would an intelligent person such as yourself take Vicodin when you really didn’t need it, because doing so would make it less effective when you did need it? Duh!
When I was in fourth grade I had to read an ancient sci fi novel called SLEEP 2 3 4 (I don’t know how to italicize on this format.). As reading material goes it was unremarkable, but one thing I do remember was that in the book’s futuristic society, everyone’s intelligence was assessed. Those who were found to be more intelligent than average had to wear earphones and have loud tones blasted into their ears at designated intervals (the smarter a person was, the more frequent and longer were his or her blasts) so that the congnitive precesses of the smarter people would be disrupted in such a way that everyone would be equal.
Maybe you’re just too fucking smart in your natural state, and the cosmos has to plague you with either headaches or drug-induced fugues to make the world fair for others.
Seriously, I hope you are back to your “A” game soon, and I sincerely appreciate the opportunity to type the word FUCKING as many times as I want without being reprimanded.
Alexis
That’s my favorite short story, “Harrison Bergeron” by Kurt Vonnegut. Handicappers on your ears to prevent any steady stream of thought. The pretty ballerinas had to wear sandbags and masks and the more agile you were, the more sand you had to carry. They had a professional position called the “Handicapper General” who I think in our day in age must be a TV exec.
So sorry for you Aunt Becky! If effects are reversible, then I assume those gaps will be slowly closing. But slowly means patience, and patience is a shitty shitty shitty word. Hang in there!
That’s rough, Becky – I remember when I had my accident, I refused to take the painkillers they were giving me because I simply couldn’t think. Somehow, the pain was easier for me to deal with than anything else. Well, that’s not entirely true – I wanted the drugs more than I can say, but I didn’t want to wait for them to kick in. If they kicked in right away, I’d have been a junkie.
*HUG*
Don’t worry – the watermelons will always be there for you.
As will us.
But don’t eat us, only the watermelon.
Just to clarify.
Oh Becky, that sucks. I like what alexis said…’the cosmos has to plague you with…..to make the world fair for others.’ ha ha ha! But seriously, my daughter did the same thing as robyn, candida yeast cleanse, no processed or artificial anything…..along with acupuncture, and she has reduced her migraines by 90%!!! I hope you feel better soon. Oh yeah, I’m not on any pain killers and i stood in the grocery store the other day, looking at my list, thinking…”what the hell is a fuji?” seriously.
I just read recently where some people get help from giving themselves a brain freeze. So head to BurgerKing and get yourself a Big Icee and give it a try.
Since I have my own chronic pain issues, I can understand this post all too well, unfortunately. I hope it improves, ASAP.
of course, it’s the Holes that get me to delurk.
my sistah was on the Dope-of-Max-Suckitude for quite some time (chronic daily migraine). she had The Holes, and she wasn’t herself for quite some time. she’s on something new that’s really helping, and she’s much more herself again, so there IS hope.
and in case you’re not totally over random medical advice provided by strangers on teh interwebbies, hers seemed to be somewhat related to crainial hypertension, totally aggravated by about a million and a half food sensitivities. don’t quote me on this, but I think she’s using an antidepressant off-label now to manage? her meds change so often I can’t keep track. I am happy to connect you with her if you want. I’m pretty sure she’s attempting to research this Bitch into submission.