A permanent condition goes away. What's next?

January 15, 2005 6:50 PM

After twenty years of twice-weekly migraines, Topamax has halted them completely for me; nary even a minor headache in three months. People with narcolepsy (and others with less severe sleep issues) have found a wonder drug in Provigil. Severe snorers, suffering from sleep apnea, arise from sleep studies on CPAP wondering what this strange "awake" feeling is. Cataracts disappear and vision returns. And then there's that other drug, so beloved by spammers.

What happens when a medical treatment truly changes your life? How does your life change when you've grown used to a condition over the span of years, and then in a matter of days it lifts? Any stories?
posted by dmd to health & fitness (22 comments total)

Chatfilter.
posted by five fresh fish at 7:09 PM on January 15, 2005

I dunno, fff, I don't have a terribly useful answer though I have been taking provigil for a couple of months now; I wouldn't mind reading others' comments. For me the main thing is not feeling sleepy ALL day and falling asleep almost every afternoon, which is good because I hope to get a job soon and sleeping at one's desk is probably not considered good form.
posted by billsaysthis at 9:38 PM on January 15, 2005

What is this Topamax? And where can I get some? Please tell me it's a pill, not a shot. If it's a shot I'll be so sad.
posted by u.n. owen at 11:56 PM on January 15, 2005

I had constant, daily headaches for ten or twelve years. I tried every drug under the sun, saw I don't know how many doctors, and was told repeatedly that it was a mental problem, not a physical one. Finally, I figured out that the problem was actually apnea and had it corrected with surgery.

It was a life changing experience and a huge relief. I was able to work at jobs that, before, probably wouldn't have been possible for me. However, I still had a number of other health problems and I was in the midst of a horrible relationship, so my life didn't improve as much as one might expect. Maybe the single biggest change was in my sense of confidence. I knew that I'd been right all along and that doctors, parents, friends, etc. had all been wrong. It made me feel like I was capable of figuring out almost anything.
posted by Clay201 at 12:18 AM on January 16, 2005

u.n. owen: Looks like pill. Maybe once your migraines go away you'll be able to think straight about climate change ;)
posted by abcde at 12:38 AM on January 16, 2005

Topamax has side effects. We bipolars call it dopamax or stupamax for a reason. Hope you like spellcheck!

But it also can cause you to lose weight...soft drinks taste nasty while you are on it, for starters.


Back on topic, hubby has sleep apnea. HIS getting the cpap machine changed MY life incredibly, as I could now actually SLEEP in the same room as him. (The snoring was so bad you could hear it outside.) For him, it was almost like turning from a zombie to a real person.That dramatic. In a lot of ways it saved our marriage.
posted by konolia at 1:09 AM on January 16, 2005

What konolia said. When I went on CPAP, my wife could sleep in the same room as me (she'd moved into the other bedroom due to my snoring). As for me, the best description was "someone turned up the brightness and contrast knobs on life". I was no longer falling asleep at my desk, and I'm awake, alert, and enjoying life (as well as losing weight). I've been on CPAP for almost four years now.
posted by mrbill at 1:51 AM on January 16, 2005

From the other end of the relationship - diagnosing and prescribing - I can tell you that when it works, it feels fabulous.

I'm currently engaged in a mini-project trying to find out which migraine patients are going to benefit from Topamax - because when it works, it really works. And I'm not just saying that because the Topamax rep took me out for dinner at a fancy steak house.
posted by ikkyu2 at 5:55 AM on January 16, 2005

I had a friend with Addison's Disease. Very slow onset, takes years to manifest completely. For 10 years or so, she got very, very tired as a result of any stress, even the good stress of happiness. So she developed ways to avoid stress. Then the Addison's got so bad that it was finally diagnosed, and she began taking cortisone. Symptoms disappeared in three days or so. But she still had all these stress-avoidance mechanisms that she couldn't shake. I met her a few years after the diagnosis, and she still couldn't handle any sort of stress. Everything had to be faced with the same calm restraint, from relationship problems to a particularly good peach.
posted by MrMoonPie at 8:05 AM on January 16, 2005 [1 favorite]

I wish that my CPAP would change my life. I've been using that thing for three months now and I'm still falling asleep at my desk every day. So far it's been useless. However, I just read an article about a procedure where they slip two plastic rods into your soft palate to provide structural support. It's supposed to prevent the soft tissue collapse that is the cause of most sleep apnea. Apparantly it is done with local anaesthesia and on an outpatient basis.

For those that have taken ProVigil, can anyone give me more specifics on side effects or just your basic experience? I'm considering asking my doctor for it.
posted by spicynuts at 8:15 AM on January 16, 2005

ProVigil sounds like a pretty weird thing. Aren't they just treating a symptom of sleep apnea with this drug? Or is doing more than just "promoting wakefulness"?
posted by NoMich at 8:42 AM on January 16, 2005

NoMich, it was my understanding that ProVigil is a narcolepsy treatment, not a sleep apnea treatment. Although, given that it's purpose is to prevent the brain from trying to go to sleep during the day, it's use to treat any symptom of severe sleep deprivation is to be expected, I'd say.
posted by spicynuts at 8:50 AM on January 16, 2005

...wondering what this strange "awake" feeling is...

The first time an anti-depressant worked for me it was a revelation. I realized that I had been depressed my entire life. I'd had bouts of severe depression but I discovered that I had been depressed in the in-between periods as well. I finally understood why other people liked life; why they saw a point to waking up for another day. It wasn't as though I became euphoric; it was just the completely new feeling that things were OK. I had to adjust to a completely new way of "living"; up 'til then I'd only really learned to imitate other people - this is what one is supposed to want, this is one is supposed to do.
posted by TimeFactor at 8:58 AM on January 16, 2005

The only side effect I've actually experienced in three months of Topamax is parathesia (fingertips tingling), but that mostly goes away if I drink enough orange juice (K⁺). On the other hand, I'm taking a miniscule dose -- 25mg/day. I was slated to taper up to six times that amount, but after two weeks on the starter dose, my headaches had vanished, and we decided to just keep it at 25 ... and I never had to increase the dose any further.

I used to also have sleep apnea (somewhat rare for a 26 year old weighing 68kg) - I had UPPP two years ago, which has done wonders for me -- I tend to wake up rested instead of dead now.

For a while before having the surgery (and before I was diagnosed with sleep apnea) I was given provigil for a while (which I think was pretty irresponsible on the part of the prescribing physician -- find the cause, don't just treat the symptom!). I really don't like provigil. I describe it to people as a sort of stimulant that works backwards -- rather than making you more awake, it just makes you less sleepy. There's a big difference. You feel exhausted and mentally/emotionally drained ... but you're not actually tired and you have no desire or need to sleep. It's not a pleasant experience...
posted by dmd at 9:04 AM on January 16, 2005

I take a lot of topamax - 200mg a day. I have a herniated disc in my neck and it causes pretty severe headaches for me. Sometimes they're migraines, sometimes not. Without it, I'm toast. I've recently experimented with lowering the dosage to 175mg and 150mg but that brought the headaches back.

There are a couple of other side effects to Topamax:
1) carbonated drinks of any kind taste flat. I've even noticed this when drinking my beloved Hefeweisen with lemon. It's a cruel twist of fate for sure.
2) don't take the dosages too close together or you'll feel like you're going to pass out.
posted by glyphlet at 9:18 AM on January 16, 2005

my understanding that ProVigil is a narcolepsy treatment,

Aha, much different ailment. Nevermind me then.
posted by NoMich at 9:22 AM on January 16, 2005

http://crazymeds.org/topamax.html
posted by Fupped Duck at 12:22 PM on January 16, 2005

Maybe the single biggest change was in my sense of confidence. I knew that I'd been right all along and that doctors, parents, friends, etc. had all been wrong. It made me feel like I was capable of figuring out almost anything.

just realizing it wasn't "all in your head" is indeed a pretty big relief aside from any particular drug. i think that should be emphasized, especially given dmd's bit in the question about ailments that one has experienced for years, i.e., things one's been told (by doctors and family, mostly) to accept for years as a permanent ailment or worse yet, "all in one's head." there are very few feelings worse, i find, than having everyone dismiss what you know is not just in your head and not just some small little inconvenience for you. people can, as a kneejerk response, be very unsympathetic/dismissive about certain physical things, i find...
posted by ifjuly at 1:35 PM on January 16, 2005

The first time an anti-depressant worked for me it was a revelation. I realized that I had been depressed my entire life. I'd had bouts of severe depression but I discovered that I had been depressed in the in-between periods as well. I finally understood why other people liked life; why they saw a point to waking up for another day. It wasn't as though I became euphoric; it was just the completely new feeling that things were OK.

You just described what happened to me when I went on SSRIs (Lexapro, 10mg/day) five months ago. I realized that being depressed and sad a lot of the time wasn't normal. Unfortunately it took some high-stress times and close to a nervous breakdown before I finally went to a doctor and he solved the problem with a tiny little pill every morning.
posted by mrbill at 1:47 PM on January 16, 2005

Eyeglasses. By the time I got glasses when I was 7 or 8, I must have needed them for a couple years (I can remember not being able to see things that others did), and my vision was about 20/200 (*now* it's like 20/600, whee).

I remember distinctly walking out of the base optician (this was at Hahn AB in Germany) and hearing the usual jet rumble, but when I looked at where it was coming from there big as life and sharp as anything was a 2-ship of F-4's instead of just more grey blur. Probably my first ho-leeeee shit moment just to see the world again.
posted by ROU_Xenophobe at 5:03 PM on January 16, 2005

When I got glasses (age 6), the first thing I said (reportedly) was ".... you can see birds while they're in the sky!?!?"
posted by dmd at 9:53 PM on January 16, 2005

Migraine sufferers may be interested in this report of a bit of research which suggests a possible reason for frequent migraines and a possible cure.
posted by biffa at 3:59 AM on January 17, 2005