March 28, 2023

Hey Hey! I wanted to make a video about my chronic migraines and specifically the side effects and withdrawal of Topiramate. I hope you find this useful and please remember I am not here to give medical advice!

Hi trainers how are you today thank you very much for joining me for those of you that don’t know me my name is heather and it’s fantastic to have you here today we are doing something a bit different than what i’ve previously done on my channel we’re going to be talking about a drug called topiramate which is a drug that’s prescribed for people with chronic

Migraines and epilepsy and the reason i’m having a chat about that today is because i’ve been on that drug for the last five years and recently i’ve just come off of it and i just wanted to have a chat about my experience because i hope that it might help people that are also suffering from chronic migraines and just want a resource to hear somebody’s first-hand

Experience of being on that drug that’s just kind of what i’m going to be chatting about today if you do have any questions as i go through this video please do you know pop them in the comments below and i’ll be happy to just talk to you as much as possible about you know my experience and hopefully answer any questions that you have but please bear in mind like

I’m not a medical professional and i’m not giving medical advice here today this is just my first hand experience from the age of 12 to about 23 maybe 24 i maybe had a migraine once or twice a year with that frequency i was not suffering from chronic migraines and i didn’t really seek out any help because i just got used to it once or twice a year you know it

Wasn’t really so big a problem around the time that i started suffering from chronic migraines the way that i live my life now was actually very different to what it was back then i was over 14 stone and i had a very sedentary lifestyle you know i wasn’t healthy i had a really bad diet i just wasn’t really doing anything in regards to kind of helping myself on a

Kind of health level so at that time when you know i was that heavy i actually had to have a heart operation because i had a hole in my heart it was congenital and it needed to be fixed during that operation i flatlined basically i was dead i’d suffered an allergic reaction or otherwise known as anaphylactic shock due to what they believe was the cleaning fluid

Used on the medical tools i went for a lot of allergy testing after the operation and they still actually don’t know what caused me to go into anaphylactic shock and flatline luckily enough i was brought back and i went on to live another day the entire experience for me was incredibly traumatic on a physical level and also on a mental level it actually took a

Really really long time to recover you know i’m not gonna go into too many details but it was it was bad like it was really bad at the same time that i was recovering from that operation there was a series of quite traumatic events that happened within my family unit it all led up to me kind of getting the big sad depression which was quite extreme as well all

Of that was kind of going on i remember i was at work one day i got a migraine i know straight away because i’m like okay i have an aura i went home just went to bed you know took painkillers and just did what i usually did which was sleep through it i woke up the next day feeling groggy but okay otherwise and then i got a migraine the next day and that had never

Ever happened to me before i was a bit worried i went home again slept through it and went back to work the day after that next day was fine the fourth day i got another migraine that to me was like a huge red flag because there is in all my life up till that point you know i said before i only had one or two migraines a year but now i’d have three in a space of

Four days what then started to happen was my migraines got so bad and so frequent that i was essentially having a migraine every one to two days as you can imagine it was really impacting my life in pretty much every way that you can imagine socially on a professional level i was taking so much time off work my depression got even worse because of course i was

Spending every other day in a huge amount of pain i was in a situation at work where i was having to justify my medical situation and the problem with a migraine is that nobody can see you having a migraine it’s different with other conditions maybe where you can actually see the signs if you walk up to somebody and you say hey i have to go home like i’m having

A migraine they literally have to take that at face value and i could see people just didn’t believe me and that was like the most frustrating thing about the whole situation because you know you just can’t tell if someone’s having a migraine the worst migraine i ever ever got i remember i was at work i got sent home and i think i slept for about eight hours

Normally that would have been enough for me to wake up and for the actual pain to have um subsided in this situation i still had a really really bad migraine like it was probably some of the you know worst pain i’ve been in at that point my arm was completely numb my face was numb i was slurry in my speech and it got so bad that when i called for advice on the

On 111 they actually said to me you know we think you’re having a stroke and of course having suffered migraines for so long i knew that i wasn’t having a stroke i knew it was just the symptoms of the migraine but i ended up having to go into hospital so that they could check it all out i remember they just said to me there’s nothing we can do for you we can give

You some anti-nausea medicine because like at that point i think i’ve thrown up four or five different times you just have to take more painkillers and you have to go home and just suffer through it it was becoming so traumatic going through this migraine situation that the next time i had a migraine after that hospital visit and that was like only two days you

Know between the two migraines i actually had a full-blown panic attack at work because of how scared i was of going through all of that pain again so after that trip to the hospital that was when i saw the advice of a neurologist that neurologist told me about topiramate he gave me a prescription for that and i went on it looking back now i feel maybe they should

Have told me more about the side effects of going on topiramate the pros the cons and that sort of thing but at the time it was just kind of sold to me as this should hopefully fix your migraines and of course at that point i was like i’ll take it i’ll take anything just just give it to me like i need it i just don’t want to suffer this anymore whilst i was also

At the neurologist we had spoken about what my potential triggers were and unfortunately i don’t know what the triggers are for my migraines i did the usual food diary to track if there was anything coinciding with my migraines i stopped drinking caffeine i was exercising and losing weight to be more healthy but they did say that it could have actually been the

Trauma of my operation that had actually triggered the migraines when i started taking topiramate this was around five or six years ago now i’m really foggy on the timeline which i apologize for but i don’t have my medical notes when i first started taking it the transition period was pretty rough i had nausea full on for about two to three weeks and i couldn’t

Eat i just had no appetite of course you have to eat i was trying to eat but it literally felt like every time i was gonna eat i was gonna throw back up again you know it wasn’t great but to be honest with you i can’t remember anything outside of that nausea i started on 25 milligrams which is a very low dosage unfortunately i then continued having migraines

From starting the 25 milligram dosage to when i needed to up it to 50 milligrams i had two migraines in between that period it was advised for me to double my dose which i did i think again maybe i had a bit of nausea but there wasn’t really any other side effect once i upped my dosage from 50 milligrams from that point to this point i’ve only had one migraine in

That entire time which to me i seriously consider like a success story i went from having a migraine every one to two days to not having had you know a migraine over a period of around four years my experience with being on topiramate overall has been really good during the quarantine i took the decision to actually come off topirame and that might seem really

Contradictory because i’ve just spent the last couple of minutes talking about how great it worked for me the reason being is because topiramate is also known for its really strong side effects there’s a couple i want to talk about which is hair loss the inability to construct your sentences or forgetfulness not being able to communicate properly and third is

Numbness in the hands i ended up suffering from all of those side effects it was only over the last couple of months where it got really really bad i would notice first of all that my left hand was pretty much numb all of the time it would it would kind of be that weird tingling sensation but a lot of the time my little finger on my left hand for example was

Just completely numb like i could barely feel it it sounds so crazy but i was just like oh i guess that’s just my body now i just didn’t really attribute it to it being a side effect of topiramate because i didn’t really know about that specific side effect the side effects i was more aware of was the hair loss and the kind of impact it has on your speech recently

I’d noticed especially kind of during the quarantine that i was really struggling to converse with people i couldn’t remember basic words i would have a sentence up here but when i tried to articulate it it just wasn’t happening i just for some reason would forget the sentence halfway through it just wasn’t me it wasn’t how i normally communicated with the world

And and that was starting to really bother me because as silly as it sounds like i didn’t want people to think i was stupid the hair loss was a huge concern for me and i appreciate it might make me sound really shallow but i only recently started making youtube videos frequently over the last couple of months and during that period i was seeing myself on screen

And looking at angles of myself that i you know can’t see normally i noticed that you know when i was wearing alice bands and i was doing my makeup on video my hairline was crazy bad like i’ve never seen it like that before and it never used to look like that i used to have really really thick hair and now if you look at my hair it’s so thin like it’s crazy

Plus the fact i’m now suffering from this jagged hairline there’s bald patches where there shouldn’t be bald patches you know you can see straight through to my scalp that was a massive change and it has really affected my confidence and as i’ve been making these videos it sounds so stupid but i’ll try and crop out my hairline because i don’t want people to think

I’m going bald at 30. i spoke to my gp about the side effects that i’ve been having and she actually did give me the advice that it would be a good idea to come off the topic and actually one of the things she said really struck a chord with me which was we don’t even know if you would be suffering from the chronic migraines now you did back then but you might not

Now but you won’t know that until you come off the topiramate i felt like i was in a really weird situation then because it kind of felt like i was potentially trading off the ability to not suffer from these you know debilitating migraines just for the sake of my vanity and maintaining you know the hair that i have now but she did have a really good point and

It was something that i wanted to find out which was am i still actually suffering from chronic migraines because as long as i’m on this drug i’m attributing the fact that i’m not having migraines to this drug but it could be the fact that i’ve you know lost weight in that time it could be the fact that the trauma from my operation and the other stuff that was

Going on in my family at the same time i’ve processed that i’ve processed what i needed to process and i’m in a different place right now so i did decide to come off the drug and i was confident and i was happy in that decision but i was scared i was nervous because i didn’t know how it was going to impact me and it was like the worst nightmare would have been

If the chronic migraines came back i just want to talk a little bit about the withdrawal that i went through coming off of that drug because it was pretty intense and it was not what i was expecting at all and considering that i was only on 50 milligrams that’s still a very low dosage for a lot of other migraine sufferers that i see discuss their dosage first of

All i couldn’t come off them just cold turkey there was a whole process to it so i went down to 25 milligrams for a whole week and then the week after i was on 25 milligrams and then alternating days where i was taking the pill at first it was fine i felt okay i felt normal you know there wasn’t really any impact and then a couple of days after i actually fully

Came off the topic it just hit me and it was the craziest thing i’ve never experienced anything like it before the first thing i want to talk about during my withdrawal process was the fatigue i would wake up in the morning for work and it would felt like i had just not slept at all during the night i’d go down to my laptop because i’m working from home at the

Moment of course so i’d go down to my laptop i’d work it for the morning and then i’d go upstairs sleep in my lunch hour go back downstairs to work in the afternoon finish work at five come back upstairs and i would just lay in bed and then i’d just sleep at seven or eight i just needed sleep 24 7 i was exhausted i had no energy i didn’t leave the house i just

Was in my bed or at my laptop and that was it that lasted for about two to three weeks the other really weird thing that happened was my hip joints would ache so bad it was like this aching pain that would go from my hip joints down to my thighs and up to my stomach it felt like cramps but it was just at my hips and around my thighs and i remember at one point

I just couldn’t even walk i just couldn’t get out of bed because of how bad my legs hurt and i know i’m laughing but it was like the weirdest thing because why would coming off drugs affect your legs that took me completely by surprise i also had nausea again very similar to the nausea i had coming onto the drugs i had the exact same thing coming off the drugs

But there was nothing i could do about it i just had to write it out and then around week three everything started abating and it got easier and eventually everything just went away it’s now been around four or five weeks since i’ve come off the drug and luckily touchwood i’ve not had a migraine which is absolutely amazing and i’m so excited and i really hope

That that continues i’m just trying to not think about it really i’m just trying to live my life as normal trying not to get anxiety about the situation because i’m actually really worried that anxiety is gonna bring it on so i’m like just just ignore it just ignore it it’s fine in regards to the hair situation there’s not really much i can do except for wait

This out when i spoke to the gp she told me that new hair growth cycles every six weeks hopefully then that means in a couple of weeks from now i might start seeing some new regrowth that’s what i’m really hoping for but when i go online and look at forums talking about the hair loss side effect some people do say that it grows back some people say that it’s never

Grown back for them once they’ve come off the drug really i just have to wait and see i am taking vitamins to try and help biotin zinc multivitamin tablets all that kind of stuff it’s all it’s all herbal not medical i’m just hoping that by taking good care of my hair it might grow back that’s what i’m hoping for but you know what like at the end of the day it’s

Just hair and i already own so many wigs i don’t think it’s gonna really be a problem for me if i do end up going bald because i’m just gonna have new hair every day like i pay for those wigs i might as well use them i’ll keep you guys updated on my hair as i make my new videos and that’s it really i just kind of wanted to have a chat like i said about topiramate

My experience on it what i went through if you did like the video please feel free to give it a thumbs up you know that would be cool my channel is mostly comprised of makeup and unboxings and stuff like that maybe check out some of my other videos and you might like what you see if you’re a pokemon fan you definitely will if you want to leave your own experience

Of you know migraines and other medication that you’ve been on i’m really happy to just have a conversation about that because for me personally i used to frequent the subreddit migraines and that was a really really great support network for me but i never i always was a lurker like i never actually talked to anyone or spoke about my experience and i think that

Was one of the things that really led into my depression and my feeling of like helplessness i wish that i had done that previously i think it would have helped me a lot but i just didn’t because i’m a massive introvert and i’m scared of social interactions otherwise do feel free to like and subscribe and i will catch you guys in the next video articuno is on

The way i ordered my wig and i ordered well i’m not going to tell you what i ordered because it’s a surprise but they sent it back no week for you no no no what amazon what are you doing why are you sending my stuff back i don’t understand regardless have the most fantastic day stay safe and i will catch you in the next video bye you

Transcribed from video
My Journey with Topiramate/Topamax: The Good the Bad and the Hair Loss By Herbyvore