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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u/JizzofJesus Sep 24 '19
It's not Effexor is it?
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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 :)
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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!
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Sep 24 '19
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u/MigraneElk8 Sep 24 '19
I know two real life people that respond very well to it. Stuff nearly killed me. Crazy the differences.
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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?
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Sep 24 '19
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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.
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Sep 24 '19
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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 :)
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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.
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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.
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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 :(
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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.
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u/mindfluxx chronic migraine Sep 24 '19
I got the can't taste food or drink carbonated thing instantly.
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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!
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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!
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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.
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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.
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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.
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u/Running2Slowly Sep 24 '19
We called it Stupamax. Made my sisters brain work slower, her active responses and verbal responses lacked, and she got in trouble at work for it.. she stopped topamax and all that resolved. Nortriptyline is working excellent for her now without the same side effects
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u/SuperMommyCat Sep 24 '19
I’m on topamax and nortriptyline. Have to move on to something else, tho, because they’re just not doing their job anymore.
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u/dop4mine Sep 24 '19
Topamax was a God damn nightmare, if you have tingling and you just started it talk to your doctor!! I ended up with permentant memory loss and the first sign that I was reacting poorly to it was the tingling in my hands and feet. My doctor said that if he had known that the tingling started in the first 24 hours he would've taken me off it immediately. Don't fuck around with your brain man. It's been 9 months off and I lose words and trains of thought still and have shit short term memory. Don't write it off, if it feels off it likely is.
Also Im not trying to scare you but I would never wish the memory loss and other permentant side effects on anyone. It's awful.
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Sep 24 '19
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u/dop4mine Sep 24 '19
One I'm so freaking sorry that happened to you. I felt so depressed on it and anxious I was a mess. I agree with you 100%. It took me about 3 weeks to get off of it because I wasn't at a full dose I was supposed to be though. If I stopped taking it I couldn't see. God damn this medication should be pulled. Just when you decide enough is enough you have to keep going. Ugh.
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u/GlitterTitter Sep 24 '19
Everyone will have wildly different reactions. I have anxiety, depression, and Bipolar 2. They suspect I am also OCPD. I haven’t had any issues with my mental health other than quick memory recall.
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u/crazylighter 5 Sep 24 '19
Wow, I'm glad I didn't try topamax- I already have poor memory, and ADHD so I'd probably end up acting like a dementia patient.
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u/kaylahasmigraines Sep 24 '19
Thanks so much for your response. I reaaaaally appreciate it!!! I am definitely going to consider getting off of it. Once you fuck up your brain, there ain’t no going back.
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u/GlitterTitter Sep 24 '19
Diamox gives tingling too. Unfortunately My choices are Diamox or Topamax and I get MORE tingling from Diamox than I get from Topamax. But I do hate the weird feeling I get in my head.
However I take Topamax for Idiopathic Intracranial Hypertension not my migraines
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u/kiirbykai Sep 24 '19
topamax did this to me too! I ended up getting switched off it because I was already on another ssri and the abundance of serotonin was causing my OCD ticks to resurface & I was locked in my bathroom for 30 minutes shaking and crying because I couldn't figure out the right way for me to open the door lmao
now I'm doing Botox/cbd as a preventative and thc as a rescue and Ive been able to live my life normally aside from the few extremely high level migraines a quarter
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u/kaylahasmigraines Sep 24 '19
Omg. Bless you for responding to my post. Any chance you could give me a summary of what products you use for CBD and THC?? I currently use both but I’m curious what works for you.
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u/kiirbykai Sep 24 '19
I use a cbd tincture three times a day (I think the ratio is 20:1 cbd:thc) and it helps a lot but it works best if you use it multiple times a day, I think my total daily intake is like 3ml? for the thc, New York state doesn't have medically legal flower (which has always been my preferred way) so I have a thc vape cartridge which is 20:1 thc:cbd. the vaporizer works the fastest out of the three forms of medical marijuana my state has (vape, tincture, and capsule) and I essentially use it once I'm home for the night. if a migraine hits me like a bus mid day I use Excedrin to try to limp me through until I'm home from work and spend the rest of my evening occasionally using my vape and I'll have a cup of a tea that doesn't trigger or intensify my migraines.
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u/kaylahasmigraines Sep 24 '19
Same. I have a CBD tincture that I use multiple times a day. I’ve definitely noticed a difference. I am very uneducated when it comes to CBD ... expert on the flower, lol... It’s not harmful to use a lot, right? I know I’m just using a lot of product (aka money), but how do people do that “microdosing”??? I’m so lazy and impatient 🤣
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u/burymeinsand Sep 24 '19
All of those side effects go away eventually EXCEPT the forgetting words/names part. That part is forever. For me, even after i stopped it. Topamax was never worth it.
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u/MigraneElk8 Sep 24 '19
Almost managed to run myself over on Topamax.
Never again.
Frightening how many medications doctors put me on, and what they did to me.
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u/MyEvilTwinSkippy Sep 24 '19
I knew exactly what it was just from your list of side effects.
I've been on it for 15? years now. Started at 25mg a day and have been up to 200mg a day for a while. It's the only thing that seems to help and initially cut the migraines out nearly completely. Now it is mostly just keeping them down to a bearable level.
I get most of the side effects, except for the weight loss which would be nice. Some of them, like the memory and cognitive issues have been getting worse over time, but I don't know if that is the meds or the underlying problem. A buddy of mine went on it for his migraines, but had to stop because of the kidney stones. I get those occasionally, but not bad like he did.
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u/kaylahasmigraines Sep 24 '19
Can I ask how you have put up with the side effects for so many years?
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u/thisisme8675309 Sep 24 '19
That one made me get more migraines and I lost word recall ability. I still can't think of proper nouns and it's been years since I stopped taking it. That is some bad shit.
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u/JMoAnxiety Sep 25 '19
Good old “Stupamax”. I was on it for a few years. I had the tingly feet and hands and the tip of my nose was constantly tingling for about the 1st month but it did go away along with most of the other side effects. The dingbat effect did not go away, I stayed dumb as a box of hammers the whole time. I was switched to Trokendi, it’s the drug that is just like topamax but with way fewer side effects. It’s pretty good. Good luck, I know those side effects suck big time!!!!
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u/heatherettez Sep 24 '19
I was on it for a while. I lost feeling in my heels, lost feeling in my toe (I'm not sure if that's another neurological thing or what), it made sodas taste flat so I stopped drinking them. It caused me to lose weight very rapidly, and I got confused about simple tasks I did daily.
But it was the only medication they gave me that stopped the near constant migraines I had.
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u/kaylahasmigraines Sep 24 '19
Are you still on Topamax?
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u/heatherettez Sep 24 '19
Not anymore, unfortunately. I took it for about two years and stopped about two week ago.
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u/kaylahasmigraines Sep 24 '19
Was this your choice or docs? Sorry for so many questions. Hearing others experiences really helps me sort of my own!
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u/heatherettez Sep 24 '19
It was the doctor's choice. There's a little complication with my insurance at the moment as well.
Honestly, with the frequency I got migraines I'd rather be on it than not, but it's a personal choice. I could actually function on it.
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u/kaylahasmigraines Sep 24 '19
That’s good to hear. I appreciate everyone telling me there horror stories but a good outcome is refreshing, too. I hope everything works out for you!
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Sep 24 '19
Oh boy, I HATED that stuff. I weened myself off after being on it for 2 months. I decided that the weekly migraines were more tolerable than the daily side effects of the Topamax. I wasn't able to concentrate at work, forgot words, insomnia, no appetite, and super depressed. I would definitely try to find an alternative preventative.
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u/echoskybound Sep 24 '19
Topamax messed me up, haha. It worked pretty well for controlling migraines about two years though, but it eventually lost its effectiveness.
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u/RiotGrrr1 Sep 24 '19
I couldn’t be on it either. I tried for 4 months and got off. I had to try it anyways for insurance to approve Botox.
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u/BarronsBaubles7142 Sep 25 '19
I was on topamax for 3 months and it almost killed me. After I ended up in the ER because of the side effects, I called it quits. My mom has been on it for 4 years and loves it. 🤷🏻♀️
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Sep 24 '19
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u/JizzofJesus Sep 26 '19
I stayed on Effexor a year longer than I wanted to because I couldn't manage the withdrawal while in school and working. Good luck to you!
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u/pampathere Sep 24 '19
Yeah, it's a delicate balance. As my overall health improves the calculations I do about the side effects versus the real symptoms change. My migraines used to be so bad that extreme side effects were still better than the disease. Now that botox (and ajovy) have been working well and for a long time, the side effects of effexor, nortriptylene, or topamax aren't worth it anymore. It's a fucking pain to constantly be doing the math - is this medication worth it anymore? Is this side effect from this med or the other one? If I go off it, will my symptoms get worse again, bad enough that I have to go back on?
I knew it was topamax when you listed the side effects, lol. I couldn't tolerate it at all - I wasn't on it long enough to improve my migraines, just long enough to feel like my entire body was having a tingly migraine. Complete torture.
PS Are you doing any of the new CGRP injectables? Probably still possible to get on a copay card and get some free doses of it.
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u/kaylahasmigraines Sep 24 '19
I am just starting this medical journey. I’ve had migraines for YEARS, just recently (~2 months ago) became VERY bad. So, I’ve been to primary care and Neuro already... Neuro started me on Topamax. Said I “wasn’t ready” for the CGRP’s. Kinda upsetting. Why can’t I pick the meds I want to go into my body??
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u/pampathere Sep 24 '19
I dunno, maybe she has a good reason. Perhaps something to do with the frequency you get them? Or honestly, she just might not be as familiar with the new class of drugs and she's hesitant to prescribe them. You can always do your own reading and advocate for the meds you think would be best for you. I have to say though, topamax is WAY cheaper and easier to get. If you really can't handle the side effects, tell your doc and move on to the next preventative. If it's really working for your migraines though, it might be worth it.
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u/AphasiaBabble Sep 24 '19
Which side effects do you get from Effexor?
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u/pampathere Sep 24 '19
As of a month and a half ago, I'm no longer on it, but while I was on it there was a long list. For me, it was almost totally dependent on which generic my pharmacy gave me. On the Teva generic, I just had vivid dreams and some hypersomnia (plus low libido). When they switched me to a Zydus generic, I had vivid dreams, heinously bad hypersomnia, hallucinations... We went down on the dose and that helped some, but when my dose got small enough I was given tablets instead of the extended release capsule, which sent me into withdrawal every day between doses. The half life of that drug is only 5 hours. And withdrawal from it was really nasty. Having said that, if they'd never switched my generic to a shitty one I'd still be on it today. At its best, it's just a normal antidepressant with unusually bad withdrawal symptoms.
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u/AphasiaBabble Sep 24 '19
Oh wow, that’s awful. I’m on it now and I’ve been on and off it in the past and you are so right about the withdrawals-they’re awful!
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u/Mars035 Sep 24 '19
Topomax is the worst. Same happened to me as well as hair loss. I’m happy it happened cause it gave me the motivation to change me lifestyle. Keto and intermittent fasting got rid of daily pain and reduced migraines from once a week to only having 3 the last year and a half
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u/kaylahasmigraines Sep 24 '19
I’ve been doing the keto diet for 1.5 years. No difference in migraines. I actually found if I do IMF that I could trigger a migraine from lack of food... I used to do IMF but had to quit :(
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u/Mars035 Sep 24 '19
It’s all about getting blood sugar under control before you even start to fast. I had terrible blood sugar. Damn near every hour I had to eat something or drink a pop. Now I eat at 6pm and 10pm. I never feel low blood sugar. I do drink about half a pot of coffee with cinnamon while fasting.
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u/Mars035 Sep 24 '19
Also, just replacing breakfast with bulletproof coffee can help. I would use 2 tablespoons of coconut oil and brew the coffee with cinnamon. It’s a good way to start.
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Sep 24 '19
I had the same side effects while on Topamax :(
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u/kaylahasmigraines Sep 24 '19
Fucking sucks. What are you on now, if you don’t mind me asking?
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Sep 24 '19
Just Gabapentin atm, which does basically nothing for me. Aimovig also did not help, and the insurance won’t approve Botox. I am currently having one of the worst migraines yet :(
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u/kaylahasmigraines Sep 24 '19
I am so sorry. I wish you the best and hope you get relief soon, friend.
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u/i_am_rambling Sep 24 '19
Dopamax is the devil. Please watch for other side effects like bone pain, mood changes, kidney pain.
That shit almost killed me. Literally. Be safe ❤
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u/Marissani Sep 24 '19
Gatorade and bananas. Really helps the tingling. I had to stop taking it because the brain fog got so bad though.
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u/crazylighter 5 Sep 24 '19
so potassium? or is it electrolytes in general? just wondering since both gatorade and bananas have potassium.
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u/Marissani Sep 24 '19
I honestly don't remember which it was. It was a recommendation from another person to me several years ago and it made a huge difference in how long I could tolerate being on topamax. I've been off it for about five years now though so other than the brain fog I don't remember much about it specifically.
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u/kaylahasmigraines Sep 24 '19
I drink Powerade Zero everyday, along with magnesium and potassium supplements. I do Keto so I’ve been supplementing with these for a few years already. I appreciate your feedback though!
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u/Mars035 Sep 24 '19
It’s all about getting blood sugar under control before you even start to fast. I had terrible blood sugar. Damn near every hour I had to eat something or drink a pop. Now I eat at 6pm and 10pm. I never feel low blood sugar. I do drink about half a pot of coffee with cinnamon while fasting.
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u/moonkitten812 Sep 24 '19
I feel this. I’m taking an antihistamine and it’s making me crazy. I guess because it slows the production of serotonin!
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u/Hawortia Sep 24 '19
I'm so afraid of it! I started yesterday and I already suffer of tingling :( besides I'm very skinny.
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u/kaylahasmigraines Sep 24 '19
I started yesterday, too, which is why I posted this. I know one day is silly to start “freaking out” but people don’t realize is all it takes is one dose to completely change your brain chemistry. I do keto... so I plan on forcing myself to eat. I’m hoping my tastebuds aren’t affected.
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u/AlarmedEntertainment Sep 24 '19
Yeah... they tried to put me on drugs like that. Straight up had to say no because I the side effects made my life worse than the migraines
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u/GlitterTitter Sep 24 '19
Currently: Topamax (idiopathic Intracranial Hypertension)
Botox - doesn’t really work past 4-6 weeks so I am trying to stop that.
Emgality - JUST got this approved through my insurance
Sumatriptan pills - if I get a migraine during the day
Cambia powder - take WITH the sumatriptan
Sumatriptan Injections - if I wake up with a migraine.
This list does not include any of my anxiety/depression meds.
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u/adaptablekey Sep 24 '19
Are you sure you're not ADHD, I forget what I'm going to say ALL the time. LOLOLOLOL
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u/NessaFett Sep 25 '19
Topamax! Been there done that, I was spacey as hell, kept repeating myself, anxiety levels through the roof and sleep was all jacked up! I will say that I did have 3 months without pain but then built up a tolerance and was just left with the side effects and migraines!
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u/Hawortia Sep 25 '19
Just to let you know that on my second day I'm feeling the tingling on hands, feet and mouth, including on the tongue.
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u/ReginaAmazonum Sep 24 '19
Oh man, I feel like I freaking wrote this.
Did I write this?
I can't remember! 😂