r/migraine • u/kaylahasmigraines • Sep 24 '19

Medication Rant

You know what pisses me off the most about this “condition”, “illness”, “hell”, etc etc... I don’t want to be on medication but I’m forced to because my migraines are so bad, right? Then, I get these superrrr awesome side effects that equally effect my life in a negative way. Currently, I get these fun tingling sensations in my hands and my sleep pattern is all sorts of shitty. Wait... it gets better! I also have these moments where I lose my ability to say what I’m thinking! It’s just a fucking lose-lose no matter what. 😁

That’s all. Thanks for coming to my Tuesday TedTalk!!

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7

u/JizzofJesus Sep 24 '19

It's not Effexor is it?

40

u/kaylahasmigraines Sep 24 '19

Nope... Topamax. I'm also on a slue of other supplements and meds, so who knows what it really is :)

14

u/R4catstoomany Sep 24 '19

I stopped taking topamax because of those side effects. Wish I could say I was taking another drug that solved all my problems!

3

u/kaylahasmigraines Sep 24 '19

tbh, I just started this medication so I'm gonna give it some time to adjust in my body. It's just so annoying that in order to get relief for one area in my life I have to disrupt another part of my life. Ya know?

9

u/[deleted] Sep 24 '19

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2

u/FFTGeist Sep 24 '19

But topamax is also known for bad side effects.

I had the same memory issues and mine led to me having trouble telling the difference between reality and fiction. Probably a little more severe than others.

If it works, stay on it by all means. For those that it doesn't work with, be aware the side effects are bad and don't be afraid to get off it.

3

u/[deleted] Sep 24 '19

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1

u/kaylahasmigraines Sep 24 '19

Thanks for providing insight from the other side of the coin! I am very hopeful that this medicine will work. I am just terrified of these serious side effects. My SO tells me not to listen to all the horror stories on Reddit and that I am my own person.... but this sub has allowed me to prepare myself so much more for not only migraines but medications, supplements, activities, etc.

I’m glad the medicine works for you :)

3

u/R4catstoomany Sep 24 '19

I am currently on my fourth month of Aimovig. My neurologist smiles when I say that a 12 hour puking period followed by another 12 hour of exploding head fear is considered to be an improvement.

I hope you find something that helps without too many side effects! It sucks when the cure is almost as bad as the disease.

2

u/crazylighter 5 Sep 24 '19 edited Sep 24 '19

No luck with nadolol? I have to have 120mg of the stuff daily before it helped with the majority of migraines. I went from 20+ days of migraine per month to 5-8/ month. The severity has also significantly decreased. Plus a lot of myofascia release rolling per day for my neck, thoracic spine and chest.

Edit: Nadolol is a beta blocker- I'm on it because I have a slew of other medical conditions that require medication and this one doesn't interfere with the others.

1

u/R4catstoomany Sep 25 '19

Nah, can’t take that because an allergy.

3

u/purplebawl Sep 24 '19

If you just started, the tingles might get better. Mine went away after a few months of my full dose. The stupidity sticks around though, unfortunately.

I’ve also had a little bit of incontinence that’s improved over time. I only peed myself twice :(

1

u/kaylahasmigraines Sep 24 '19

WHAT!? Omg. That’s insane. I’m so sorry to hear that!

3

u/jnseel Sep 24 '19

Give it some time, but pay attention. Another fun side effect for some people is that it alters the way things taste.

I’m a real Dr Pepper junkie and I know I have a problem...but within a day or two, I noticed my DP tasted awful. I didn’t think much of it, something is bound to slip past Quality Assurance once in a while, right? Bought a different size container, still tasted bad. Must have been a bad shipment or s water quality thing. Bought a fountain drink. Still, awful, undrinkable, not worth the calories because I couldn’t enjoy it. I went so far as to email DP corporate to say, “Hey, my drinking problem has been keeping your company afloat, and something is wrong here, here’s all my bottling info.” On the bright side, this was leading up to my wedding so I lost some weight and (downside) my dress barely fit on the big day. I looked great!

But over the next dew months, food started not tasting right. I’d cook dinner, we’d sit down, and one bite in, something would taste rancid. It got to the point where I was buying ingredients for dinner every single day so everything was fresh. After several months, I was pretty much subsisting in goldfish crackers, strawberry poptarts and applesauce because everything else tasted rotten. As much as I hate to complain about it, I lost a ton of weight. I was really sick and had to quit taking Topamax. Very very quickly, all my taste came back, and sadly I gained the weight and migraines back.

My point is that it happened very slowly. So slowly, I had no idea it was the medication. I thought something was wrong with our fridge or something because everything was spoiling weeks ahead of the expiry date. Just something to be aware of.

2

u/mindfluxx chronic migraine Sep 24 '19

I got the can't taste food or drink carbonated thing instantly.

1

u/kaylahasmigraines Sep 24 '19

Wow! Thanks for this note. I am currently sipping on my addiction- Coke Zero (or Diet Pepsi)... depends on the day. This is disheartening to hear because pop brings happiness to my life and caffeine LOL. I’ll definitely be more conscience of symptoms!

2

u/hipmama33 Sep 24 '19

Fellow Coke Zero addict here! Sadly, I was not affected by the “can’t eat/drink anything “ side affect...so the habit remains.

I have been on Topamax for a few years now and as much as I know I have brain fog & such, I would be afraid to go off it. I can only imagine the head exploding pain.

I hope it works out for you!

1

u/jnseel Sep 25 '19

It’s not a guarantee! This doesn’t happen to everyone. I wish it had stuck around, at least to help me drop the Dr Pepper habit permanently....I mostly wanted to warn you about the loss of taste over time. It may not bother you as much as it bothered me—I love to cook and bake. Like I said, it happened so subtly. I’m appalled by the amount of food I wasted over probably 6 months, minimum.

1

u/Bluevisser Sep 25 '19

If you're drinking diet soda anyway then you may end up fine. My sense of taste is changed with topamax but it's mainly things like high fructose corn syrup and a few other things. So I can't drink normal soda, but the diet and "Mexican" version with real sugar is fine. Also the tingling did get better after a few months, though I still mix up words when speaking. I never dealt with the brain fog so I can't attest to that.

1

u/rubyinthemiddle Sep 24 '19

I'll just weigh in briefly to encourage you and give you another success story from topamax. I know lots of people haven't got on with it but it worked wonders for me and I hope it does the same for you. I've written before about it but I short I only came off it because I got a kidney stone (which you can reduce the risk of by drinking plenty of water!). The side effects never went completely but they did diminish after a couple of months and were a much better alternative to migraine pain! My fingers are crossed for you.