Ask Endochick: Is Topomax Prescribed For Endometriosis?

Dear E, 

I’ve been a long term reader and notice you’ve taken Topamax. Does it help your endo pain? I’ve tried bc pill, Lupron (2 round… NEVER AGAIN!!!!!), and pain meds (doctor strength and from drug store). Running out of options. I know Topamax isn’t a pain med, but neither is Zoloft… And I’ve tried that, too. It help a little but I was a ZOMBIE! Thanks!

Dee Dee

Dee Dee,

Topamax is an antiepileptic medication, used for treating epilepsy, seizure disorder and migraine disorder, neuropathic pain and bipolar disorder. Doctor’s, usually neurologists, may prescribe the medication for other off label reasons. I do know at one point it was used for its weight-loss properties (it can zap your appetite and make food and drink, particularly carbonated sodas, taste bad). But the side effects didn’t make up for the pounds lost. What’s 5-10 lbs. when everything tastes stale, your feet and hands tingle, and you get a kidney stone?

I’ve read of anticonvulsants being prescribed to treat chronic pelvic conditions such as interstitial cystitis and vulvodynia; or conditions aggrivating from the pudendal nerve.

Again, though, anticonvulsants have heavy side effects. Some anticonvulsants even have Black Box warnings. Do your research and discuss medications with your doctor.

The post where things aren’t going well…

This is only day two on the Zoloft-for-Endometriosis regime, and my body isn’t adjusting easily. I become exhausted after taking it, and practically pass out or become a zombie shortly afterwards. I can’t seem to focus very well on things up close about 30 minutes after taking the drug, and this scares the crap out of me! Then I’m waking up still in this zombie state. It’s as if I’m walking around, aware of myself but not aware of myself, somewhat locked inside at times. And I’m only on 25 mg. When I was having panic attacks (a long, long time ago and related to my dysautonomia), I had been on this medication and remember being on 75 mg a day. I believe. Possibly more at times. But I don’t remember feeling like this! I’m worried it’s because of my other medications, or my other conditions. I am just so nauseous. I can barely eat. I began to feel remotely hungry and begin to get something in me only to have to stop eating because I feel like I’m going to be sick. And then half the time I feel like I’m going to be sick anyway! And the sleepiness… omg! I could close my eyes, right now, right here, and go to sleep.

OH. Brilliant. No wonder why I’m EXHAUSTED… look what I just found while looking up drug interactions… My doctor checked for interactions between everything and Topamax to find something that would work, but she didn’t think to check my other medicines? And what about the pharmacists? Oh, dear!

This, from Drugs.com about my BACLOFEN and ZOLOFT:

Applies to: Zoloft (sertraline) and baclofen
MONITOR: Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients. MANAGEMENT: During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be counseled to avoid hazardous activities requiring complete mental alertness and motor coordination until they know how these agents affect them, and to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.

This explains why I can barely keep my eyes open! VERY SCARY!

Medlineplus about DESMOPRESSIN and ZOLOFT:

tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention any of the following: antidepressants such as amitriptyline, amoxapine, clomipramine (Anafranil), desipramine (Norpramin), doxepin (Sinequan), imipramine (Tofranil), nortriptyline (Aventyl, Pamelor), protriptyline (Vivactil), and trimipramine (Surmontil); aspirin and other nonsteroidal anti-inflammatory medications (NSAIDS) such as ibuprofen (Advil, Motrin) and naproxen (Aleve, Naprosyn); carbamazepine (Tegretol); chlorpromazine (Thorazine, Sonazine); chlorpropamide (Diabinese); clofibrate; demeclocyline (Declomycin); fludrocortisone; heparin; lamotrigine (Lamictal); lithium (Eskalith, Lithobid); narcotic (opiate) medications for pain; oxybutynin (Ditropan); selective serotonin reuptake inhibitors (SSRIs) such as citalopram (Celexa), escitalopram (Lexapro), fluoxetine (Prozac, Sarafem), fluvoxamine, paroxetine (Paxil), and sertraline (Zoloft);and urea (Pytest). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.Other medications may also interact with desmopressin, so be sure to tell your doctor about all the medications you are taking, even those that do not appear on this list.

I remember the problems I had with Desmpopressin and pain medicine after my surgery, with my numbers going all over the place. If this medicine does the same thing, and it does crap for my pain, I will NOT be a happy camper. It also interacts with my levothryoxine, but I can find out in what way! Seriously.

And another gem from Drugs.com – TOPAMAX and ZOLOFT:

 

Applies to: Zoloft (sertraline) and Topamax(topiramate)
MONITOR: Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients. MANAGEMENT: During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be counseled to avoid hazardous activities requiring complete mental alertness and motor coordination until they know how these agents affect them, and to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.

*I don’t know why that’s bold. I deleted something that was in bold and then backspaced that paragraph. I’ve tried everything I can think of and can’t get the paragraph to go to normal font. Oh, well. Deal with it.

But, in short, this so explains why I am EXHAUSTED and have no appetite. Now, the big question is: will these side effects going away soon enough for me to find out of this medicine is going to work for the pain. Frankly, it’s getting harder to deal with the this, and now I have a headache and just want to sleep on my couch. And frankly, I think the Zoloft is bumming me out. I ask you, how can an anti-depressant bum you out? It’s a happy drug, right? Problem is, I was happy before, just in pain. I just need my pain relieved, not a mood stabilizer. The pain isn’t in my mind, it’s in my damn pelvis!! It’s frakkin’ real! It has nothing to do with the amount of serotonin floating around in my brain, or a lack of endorphins. But right now, right here, I’m getting rather pissed off because I’m feeling worse than I did the other day.

I know it’s easy for a doctor who doesn’t know me to think that this pain may be coming from mind, but I’m so fed up with that bias in medicine. So frakkin’ fed up!!!!!!!

Neurology Appointment and then some…

I had a neuro appointment today. For reasons outside of my control, I had rescheduled this appointment twice and it was long over due. It started off in a huff of confusion, though. The doctor comes in and goes, “It’s been a hectic day, and I apologize now if I get called away…”and not two minutes after he had sat down and inquired as to how my migraines were doing, there was a knock on the door. Dr. D stepped out into the hallway and I overheard him and a nurse discussing what I think was a case in the ED. But this patient was having a procedure with another doctor down there at the time and my doctor had to be a) brought up to speed, b) advised as to something, and c) asked what he wanted Dr so-and-so to do with said patient when he was done with them. Then, when I could hear him edging closer to the door (because their voices were growing louder), a very loud voice boomed over the PA system, “Dr. D blah blah blah MD” Whatever that code means… and he was off. Then not even five minutes later, I hear the same type of “code” being called for another doctor. Whatever was going on with his patient mustn’t have been bad!

When we got back, I told him that I hadn’t had a migraine since shortly after the increase to 125 mg of Topamax daily. He’s keeping it at that dose for now. And the baclofen is working nicely as I haven’t had any more trigeminal neuralgia attacks. But, since Tuesday the right side of my face has been numb from my temple eye area down my neck and I don’t have a headache. Concerned that I am now experiencing this sans migraine, he is ordering another MRI with and without contrast for Thursday morning. I will, of course, be getting copies of my films put onto a CD so I’ll post pics after the fun-filled, valium-laden event goes down. I love my neuro – valium for an open MRI. A claustrophobes best friend.

Then, while I had his ear (cause frankly I didn’t know how long I would have it!), I asked about these episodes I had been having in my sleep. They used to be frequent when I was pregnant with my daughter, but then tapered off, yet recently it seems they are occuring more often. I will get into that R.E.M. cycle of sleep, where you are just about to drift into deep sleep, when I am suddenly jolted awake and finding myself gasping for air. I am also exhausted all the time! I could fall asleep in front of my computer, in the car, at work (this nearly happened today), and I just thought it was because I finction on 6-7 hours of sleep per night. After all, I’ve heard some people just don’t need that 8-10 hours that docs ramble on about. I thought I was one of them ’cause I functioned brilliantly on little sleep. And up until this whole “you can’t have caffeine – at all ” business, I was doing fine. Now without the caffeine, I realize how exhausted I am! So I mention all this to the neuro because my neuro is the “Sleep Doctor” – his medical interests are “cognitive effects of sleep disorders.” He works in the Sleep Lab Monday – Thursday and then is in the neurology clinic on Fridays. He scolded me for only getting 6-7 hours of sleep a night and told me I am putting myself at risk for a heart attack and stroke, among other things. He thinks it sounds like Obstructive Sleep Apnea and is ordering a polysomnogram – a sleep study.

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Day 3 of Cyst Madness

This is the third day I’ve been hurting with this cyst! Why won’t the darn thing just pop or disolve already? It’s leaving me in a constants state of blah, and cramp, and blah again. And I’m tired. It’s ridiculous.

I could go into my gyno’s office and have the standard ultrasound. But what would that prove? Yes, I have a  cyst. oooh. Like I need confirmation on that one. And it’s most likely a small one since I’m not hunched on the floor throwing up and crying like a baby. I’ve had worse, truth be told. Frankly, it’s just annoying.

And I know why I’m getting them again – Topamax. For some reason Topamax causes an increase in ovarian cysts. Add to that that Mirena is increases ones chances of getting ovarian cysts, and I’m a happy camper. But I haven’t had one in a while. And the last time I had one, it got to the point where after 2 weeks the pain was unbearable, I had to be sent for ultrasound. It wasn’t even that big, either! But when you have endo on your tube, a cyst pressing on the ovary just aggrivated the heck out of that area. This was the doctor’s visit when I decided it was time for the hysterectomy.

And that led to the urologist, which led to the endocrinologist, which led to the passing out, which led to the neurologists, which led to being put off of work, which all in all is now being called the Summer of Med School – because I’ve learned enough to probably take a med school entrance exam and pass. lol j/k

And I always feel so silly going to the doctors for cysts. It’s not like they can do anything for them anyway.

Afternoon

We have a birthday party cook-out to go to for my cousin. Usually I love going to these family events. The kids get to play with their cousin and I get to mingle with my peeps. It’s all good. And someone else cooks dinner. Yeah, good stuff.

But now that I’m taking the Topamax with the side dose of Tegretol, me and the sun are not best friends. Actually we are like that really close girl couple everyone knows in school, but one of the girls eventually steals the others boyfriend and the never speak again. Yeah, the sun just stole my boyfriend and I’m not taking her calls anymore. We’ve tried to hang out, but I just end up burnt and sick. It’s not worth it. So I found two new best friends – the air conditioner and this chick hanging with her, the watch it now feature on Netflix.

So I’m about to cheat on my two new best buds to go hang with the sun. It feels dirty, like I’m doing it behind their back. I would tell them but they wouldn’t understand. They would be all “But, Endochick, Sun makes you sick!” And how can I argue with raw honesty people? Seriously. I can not.

Yet I must go, because it’s a birthday party and little teeny boppers don’t understand these complex adult relationships. I don’t think I understand myself.

Messy Monday

I’m such a mess today. This is why:

1) Mr. Topamax is causing me to have very vivid dreams. This isn’t a bad thing, per say, cause they aren’t nightmares. Let’s just say I woke up in a charged mood which doesn’t mix real well with that zombie stupor the Tegretol puts me in when I first wake up. So there I am – the libido of a teenage boy yet with the stamina of an 80 year old geriatric patient who is hardly coherent. And when the fog clears, I’m just about to go mad. I know – this is way TMI – but Topamax has a s/e of Decreaesed Libido. Yeah, right. I don’t think so, people.

2) I’m babysitting my cousin. She’s 4 1/2 and mouthy. She’s playing my kids, and keeping them busy, so I don’t mind. But…. they are so stinking loud!!!! Kids really annoy me lately. This is one reason why I’m enjoying my doctor-enforced-break from work. My kids, I can handle them. When it’s just us at home, the house is calm. They are in their room or on their computers and it’s really quiet. But add a third munchin and it’s like Chuckie Cheeses in here! Not a good mix when Endochick is slipping in and out of lala land with these seizure meds.

3) I got my call from the Dizzy Clinic and will be going for their battery of tests on July 9th. Fun. How much more work can I miss, really? Can I draw unemployment for this, or only when you’re fired? I’ve never done that, so not sure. But these tests don’t sound like fun! They’ll test my hearing. She also mentioned something about pouring warm water and wax into my ear – EEEEEK!! I HATE HAVING THINGS PUT AND POURED INTO MY EAR!!!!!!! She mentioned a test about putting headphones on me and them video taping my eye movements or something like that. It’s hard to talk to someone when you have a 2 year old crawling all over your lap and you’re trying to remember how to say Trigeminal Neuralgia but can’t say it right. I sounded like a moron.

OK well, enough ranting, I have to start dinner. Where did the day go? I applied for some freelance writing work. I hope to get some bites. Being out of work is draining the pocket book! It sucks. At this point, I’ll write just about anything.

Misspellings

Do you notice the various misspelled words and errors? Yeah, just a lovely side effect of Topamax. Or it’s Vista being a monkey turd messing with me (Vista and laptops, apparently don’t like each other or something). It makes my cursor fly everywhere if I don’t turn off the keypad while I’m typing, which I don’t always do. So, sometimes my words are misspelled or just missing. And I never reread things before posting them. I’m awful like that. Or lazy. Ok – back to homework.

It’s been a long day…

What started out as a pretty good day turned really, really bad, really, really quick. I had just watched The Bachelorette episode I missed last night and I thought it was time I did some homework. So I got to work on my assignment and was highlighting away. There I am tapping away at my keyboard about 30 minutes into the assignment – and I must stress that I felt NO stress, pressure, anxiety or anything of that nature of this assignment or about anything while doing this assignment – when all of a sudden my heart start racing. I’m just sitting there, mind you. With a stinking highlighter in my hand. I try to ignore it. I take some deep breaths and focus on the writing. But then I notice it’s harder to breath, then it’s getting harder to see because the room is spinning. I grab my cell and rush into the bedroom and crouch over my bed as I frantically hold down the speed dial for my grandma. Thankfully she lives next door and was home. I yelled “GET OVER HERE” and then hung up before I nearly lost my breath. I couldn’t have said anymore, really. I was panting. She forced me outside thinking I was hyperventilating. About ten minutes into the “attack” or “spell,” it began easing up. But this time, unlike last time, I didn’t feel so relieved. I was fed up. I haven’t smelled that smoke smell in over a week, and even though I had a migraine this weekend, I had niavely put this behind me thinking perhaps that it had been something that had occured in passing and wouldn’t happen again. And if, in the future it did, I would deal with it then. But the future didn’t mean so soon, because I really hate that feeling of not having control of my own conciousness.

I made my grandmother drive me to my doctor’s office. I didn’t even call for an appointment. I was set on walking in there and demanding on seeing him. He was going to fix this, I kept telling her. But I made it to the receptionist’s desk, and that was about it, really. I had about two sentences out when all I could manage to say was “I can’t stand…” and I dropped to the floor in a puddle of tears. I felt like I was one of those rides where the elevator drops you. They put me in a wheelchair and took me back – no questions asked. But what scared me so much about that moment was the last time this happened I was able to drive myself to the doctors, drive myself to another doctors to be fitted for a holter monitor, drive to Walgreens to fill a prescription, and then drive home and care for two kids. This time, I couldn’t even stand on my own two legs. The whole time I’m there I’m doubting myself, I’m thinking maybe I should’ve went to the ER. And I think now that I should’ve because Dr. dumbo couldn’t help me in the end. They did do an ekg and finally concurred with me that it is not my heart. He does think it sounds like dysautonomia. They tried to rush me into my neurologist but the guy’s only in office on Fridays. Understandably he’s a bit booked. He’s in sleep lab the rest of the week – when he’s not teaching. I always end up with the teaching docs – and I worry that i’m on their whiteboards on some morning lecture. Case Study: Female – 28 – Syncope – smells smoke – is this for real? But I would gladly be the morning lecture if it’s means the next person doesn’t have to experience the incompetince I’ve experience thus far.

I see Dr. Neuro for my pre-scheduled “Let’s see how Topamax is doing” appointment on July 18th. He’s in for one heck of a ride when he enters that exam room. If I make it that long. Next time this happens… I don’t know. I’m just worried that if it happens at work like it did this morning, they’ll have no choice but to call 911.

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