February 1, 2023

I started to get aura headaches about 3 years after I was diagnosed with MS. I was experiencing vertigo and severe fatigue with them to the point where I was spending most of my time in bed recovering. I was prescribed Topiramate or Topamax as it is also known and this has reduced my headaches hugely.

Hi everyone how are you all doing firstly how is everybody coping with this hot weather that we’ve been having it’s like gone crazy where where does it come from i am here today actually to talk about migraines because i have just spent the last three weeks having one yeah three weeks actually um and i want to talk about migraines and fatigue and uh because i

Honestly feel like they’re getting worse as time progresses i was diagnosed with aura headaches so what i want to do today is talk a little bit about what they are what it involved for me when i was diagnosed with it what the specialists wanted to put me on in terms of a plan and medication and kind of what i do now to manage it going forward and the signs and

The symptoms that i get before one comes on if you do suffer from migraine headaches then i’m hoping that this video might be a bit of information about them but equally if you don’t suffer from migraine headaches then actually i just think it’s worth knowing anyway because i didn’t suffer from migraine headaches either up until about i would say it was about

Three years after i was diagnosed with ms and then it just came on quite suddenly uh and it’s never been a thing that’s gone away and actually it’s one of the things that really hampers me when i do have it and completely wipes me out knocks me for six yeah you know i was bedridden for most of this three weeks really and um they’re the things that people don’t

See they’re the things that are so invisible to other people and i would be invisible because i you’re not gonna see me because i literally am hidden from the world when this happens because i can’t even bring myself to do anything they are that bad please don’t think that i’m saying that everybody’s going to get a migraine headache that is not what i’m saying

I’m just saying that there are things that happen with ms and because of the longevity of the disease nobody really knows what they’re going to get nobody knows what symptoms they’re going to get in the future you know i there are so many things that i have now got which i didn’t have at the start of my ms like fatigue vertigo these aura migraines and so you know

Looking back on it i used to meet up with people from the ms society and they used to talk about these things and i used to think to myself oh i’m i feel lucky in a sense that i don’t have those things that these people are talking about because i could see how much it put their life on hold when they did have it and now i’m one of those people that has it and i

And i get it now and i totally understand what they’re going through so i’m just saying that there are sometimes points with ms that you in your life with ms that you don’t know where it’s going to take a turn and my ms has taken a turn in so many different directions um paths i never knew i was going to go off with it and it those paths and those those avenues

Still continue to branch out and go into different places and who knows where they’re going to go in the future but i’m just going to follow them and just keep doing what i do and keep looking after myself and trying to navigate this crazy disease so i’m going to try and cut this down as briefly as possible because honestly my aura headaches and my migraines go

Back a long long time ago like long long long long time and i was how old was i i was a youngster back then very young not like now so old joke joking i still have my life ahead of me back on track laura so i’ve literally forgotten what i was going to say so about three years after my diagnosis 2019 about 2011 i started to just get vertigo really how it started

Was that i felt the my head wanting to explode but the weirdest thing is is that i never had a headache it just felt like there was this ache in my head and i could sometimes i could shake my head back and forth and i could feel like the pain inside my head but there was never any headache and i would feel like this for like a week or so and sometimes i feel

Like it for a couple of days like leading up to what would then be absolutely exhausting fatigue i mean i’m talking about i totally out of it in my bed can’t even imagine doing anything you know i don’t want to talk to anybody can’t think about getting up to get a shower can’t get dressed can’t literally do anything probably would have gone the whole week not

Eating and drinking because just the thought of getting up to do anything that’s what it feels like that is what my fatigue feels like anyway i went off and had all these tests done and they couldn’t really work out what it was i had eyesight tests done because i thought maybe there was something wrong with my eyesight but that that was all fine i had ear um

Hearing tests done as well that was all fine um and eventually they referred me to this amazing guy who literally i feel has like turned my life around and he just knew straight away he just he seemed to know what it was after asking me so many questions about you know what my symptoms were and how long i’d had it what i experienced and those kind of things

He decided to start me on something called to pyramid i think it is also known as topamax some people might know it as that more than to pyramate it is the only medication that i am on it is the only medication that i can’t come off because at one point i tried to and it wasn’t a good idea um it all came back and it was a bit of a mess and yeah so i started

Taking 25 milligrams a day every day and within about two weeks of taking the tablets i couldn’t believe the difference in how i was feeling and then obviously progressively through taking them more and more there was just such a dramatic change in my migraines and how less they were happening we then upped the dose to 50 milligrams a day and then i i went from

Having migraines every month to hardly have in migraines i would then say about every six months then about two years ago my migraines have started up again like really really bad i would say that i’m back to having a migraine probably i would say every month if not every two months without fail and i you know it was it was to the point again where it was like

Almost hate using that word but disabling because you can’t do anything and then with this migraine comes this horrible fatigue that knocks you i feel like the life has been sucked out of me i don’t have anything left and then my body it’s like my body has to recover for a whole week afterwards it’s i don’t know why it’s even happening i never really got the

Explanation of why it happens if anybody has that explanation out there please please share it with me to cut another really long story short i have now been put on to a higher dosage off to pyramid so i’ve gone from because i went to go and see the doctor about this and i’ve basically gone from being on 50 milligrams a day to being on a hundred she put me on a

Hundred um but even that wasn’t enough so i’ve now gone on to 120 milligrams after pyramid a day which to be honest i never ever thought that i’d see the day i never thought i’d see the day that that would happen because it’s the only thing that can control my migraines and again the doctor was asking me was there anything to do with my eyes any problems but

It all comes down to this problem with the headaches and because she knows that i have ms then she just thinks it’s all neurological and to do with my ms we can’t blame ms for everything but ms i am blaming you for this because i think it’s your fault so this is the most important thing that i want anybody to take away from this video is that if you start feeling

Like you are having these um firstly first and foremost is please obviously go and seek medical advice and go and get them checked out because it’s so important that you do because there is definitely medication out there for it the second thing is that if you do get diagnosed with headaches or headaches um that leave you with fatigue and that you will know this

And you’ll know because you’ll start understanding your body and your your body will have a routine after a while what happens is that you almost have to set yourself time aside for however long you generally know that it’s going to start happening you have to you just have to rest you have to let your body rest and recover i mean half the time you don’t even

Have a choice anyway because like your body doesn’t want to do anything you don’t want to do anything it’s almost like you have this mental physical block on your whole life for about not your whole life but for about two or three weeks for when there for this the size it wants to go absolutely avoid alcohol or caffeine or anything like that that can trigger more

Sort of stimulation in in the brain and i get so much fluids into me before if i know it’s coming on i will drink so much water um and any fruits with like high water content as well and just drink that all the way through because it almost feels like my brain’s thirsty i know that sounds a bit crazy but it does it just feels like my brain is thirsty asleep as

Well and you know if being in a dark cool room helps that’s always a good thing too and maybe just kind of shut off from phones and tvs and anything like that and just try and keep yourself and your body and your mind calm when you start feeling better which you’ll know because like myself i will know instantly when i wake up if my fatigue has started to lift

If my headaches have started to lift then don’t rush back into doing crazy things like still take things easy because even though you think you’ve got a full tank you probably haven’t sorry one last thing i forgot to mention as well is that before i was offered the treatment up to pyramid my ms team told me to take aspirin for my headaches that could be because

It works quicker and it’s more effective in helping with headaches i’m not entirely sure but that’s what they suggested so obviously if you don’t have access to to pyramid then aspirin is something that they recommended for me i think i should just mention about the tapiramate because not everybody it can tolerate certain medications it does come with obviously

Side effects i know that quite a few people have tried the tapiramate and they’ve not been able to tolerate it it’s quite odd because i can’t tolerate stuff like gabapentin and progablin but yeah i’m fine on this but one of the side effects is that it does make you lose weight and you know not just a little bit like quite a lot and that did happen with me um

But i think there’s like different types of medication out there so if you do want to speak to your medical team about this medication or other medication then you have to find the one that suits you because not obviously every medication is going to work for everybody else but as far as i’m concerned this has helped me i feel that if i hadn’t had to pyramid i

Think i would have just probably carried on down that road of just probably you know having bouts of this migraine and fatigue and being bedridden like every month maybe it would have got worse i don’t know the only thing that i will say is that it is getting worse it is actually the frequency of it is not getting worse but the severity of it is getting worse

And that for me is a little bit worrying but i don’t know why i i don’t know why yeah if you or if any of you have any questions about the medication or about the headaches or anything i mean obviously what can you cover in you know i was going to say 20 minutes but it’s actually 30 minutes what can you cover in these videos when you’ve lived a life of eight

Years with something not really much but like i said if anybody has any questions or anything about it then please ask away anyway i hope you all enjoy the weather if you like that kind of weather um but if not then i hope you’re all looking forward to having a bit of rain or a bit at least a bit of coolness anyway take care everyone and i’ll speak to you soon bye

Transcribed from video
Migraines With Multiple Sclerosis Topamax / Topiramate By Laura Irons talks MS