Please login or register.

Login with username, password and session length
Advanced search  

News:

Menopause Matters magazine ISSUE 81 out now. (Autumn issue, September 2025)

media

Pages: [1] 2

Author Topic: Topirimate for headaches  (Read 8206 times)

2cats

  • Member
  • *
  • Posts: 535
Topirimate for headaches
« on: September 28, 2016, 11:55:02 AM »

Just wondering if anyone has been prescribed Topirimate for migraines?  I've been taking 25mg a night for nearly 3 weeks and my headaches have disappeared! It's a miracle and such a relief.  However, (if you've seen my other post) I've been very weepy lately and not my usual chirpy self .....  the Topirimate leaflet warns that depression can be a side effect! 

I so don't want it to be the Topirimate - so wondering what other people's experiences have been when taking it? 
Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #1 on: September 28, 2016, 01:42:07 PM »

Hi 2cats

I'm really glad that the Topirimate seems to be helping with the migraines: the specialists keep on prescribing it so it must work for some people. You can never know whether something will work unless you try it but as we are all so different, our reactions will differ enormously.

Unfortunately, it made me very unwell. The side effects kicked in on day one and were traumatic. I persevered for about a year but was forced  to stop it very suddenly. It really didn't help with the migraine at all.

Looking back the only benefit to my taking it was that it seemed to stop my vomiting. Before taking it I would vomit multiple times a day with every migraine: whilst taking it the nausea and vomiting were exceptionally violent but when I stopped it, all vomiting stopped too. I haven't vomited for any reason in c10 years which is unusual for me.

The drug most definitely affects your brain, in so many ways. It effects what you can eat, the quantities you can eat, what you can drink, how you feel about food: it has been used to treat obese patients and has been known to trigger anorexia. Depression can be a side effect as can many other things but of course not everyone will experience all of these symptoms: we are all so very different. You may be very lucky and find it offers you a solution.

I really wish you well.  x
« Last Edit: September 28, 2016, 01:59:25 PM by Elizabethrose »
Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #2 on: September 28, 2016, 03:25:27 PM »

Well Rockhopper, it just shows how different we all are and why it's always worth giving things a try. I'm really delighted for you.

I put up with all of the side effects in the hope that it may eventually subdue the migs but it really didn't work. Aside from it stopping the terrible vomiting, it also made me lose a lot of weight (3 stone) that I'd put on whilst taking Pizotifen as a prophylactic - trouble was it just continued dropping off. It was very lucky that I have a very good attitude to food (really enjoy eating!) as I had to force food into my mouth. I think I ended up a stone lower than my normal weight at the time so down to about 7 1/2 stone.

I really wish you well and hope it continues working for you! Migraines are terrible things! x
Logged

2cats

  • Member
  • *
  • Posts: 535
Re: Topirimate for headaches
« Reply #3 on: September 28, 2016, 04:05:56 PM »

Hi all,

Thanks for your replies everyone.  I thought it was reducing my appetite at first but that seems to have worn off, more's the pity!  I only seem to need 25mg at night though it says on box, to up to one x2 a day, but as all signs of headache have disappeared atm, I'm not going to take more than I need to.  It's amazing considering I was getting headaches everyday and migraines more and more regularly, which meant more and more triptan medication.  Miserable cow or daily headaches??? What a choice!

I'm wondering whether the low mood symptoms will taper off too if I persevere but getting even just a slight reminder of how i was 5 years ago, is quite frightening!?  I've come so far, to slide back now is painful.

As my headaches and migraines had started to increase, I'm wondering if my oestrogen needs to be upped?  I've been on 50mcg for 5 years and I'm now late 40s?? 

It would be useful to hear your thoughts and also to know if anyone took it and had low mood which did fade off.
Thanks everyone - as always, you're there when I need you. :)


Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #4 on: September 28, 2016, 04:17:23 PM »

2cats, it sounds promising to me: whilst for me there was a very slight improvement in the migraine intensity in the beginning, it didn't get any better than that. I found that my body took a lot of getting used to the drug and the gradual increases I was advised to make. With every increase a whole new batch of side effects struck then began to calm, though that could take weeks. I found though that at about 9 months with no changes in dosage, the side effects swung back in with a vengeance and more!!

I am really reactive, you may find like Rockhopper that you'll do really well. The neurologist I was seeing at that stage said that the drug needed to be built gradually and that the surge of side effects can be severe if started or increased too quickly. It's still early days give it a chance to settle. If however, you notice a continued decline in your mental health, go back and discuss it with your GP. x
Logged

jasper

  • Guest
Re: Topirimate for headaches
« Reply #5 on: October 01, 2016, 10:22:58 AM »

2cats, really sorry to hear you suffer from this.  I have a severe headache problem (nearly 4 years of daily headache plus migraines) and have been down this road. Topiramate did dull the headaches a bit for me but unfortunately it turned me into a zombie and I struggled to express myself and forgot words for things, so I gave up.  As a drug I have to say it worries me as it really slows the brain down.  I have been to the headache clinic at Queens Sq etc and it amazed me that they had no interest in the possibility of hormones having an impact in a woman in her 40s (I am 47 now and so it started when I was 43). I note that you are already on estrogen patch and I don't know if you are peri or menopausal? I am still having regular periods though clearly there are a lot of fluctuations and I have been seeing Prof Anne Macgregor.  We started off with the evorel patch (estrogen only as I was still having regular periods even on the 75 dose). It had a significant impact on my head at certain times in my cycle but made others worse, I assume because my hormones were still going up and down as well.  So now she is moving me across to the Zoely (bioidentical estrogen) pill to stop any variability (see my other post) so I just have to hope it will help.  So I suppose I am saying, I hope Topiramate works out for you, but if not it might be worth revisiting the hormone side of things as after 3 years of tracking my headaches day by day, it is still the only really clear trigger for me.
Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #6 on: October 02, 2016, 09:37:37 AM »

I never drank much alcohol anyway, the occasional g and t, glass of champagne, or Pimms, but as the Topiramate made any fizzy drink taste absolutely disgusting (including fizzy water) I couldn't drink anything with a fizz. Also couldn't drink, juices, tea, coffee or milk. My only beverage was tap water for over a year!

Like Jasper, in addition to the usual migraine disconnect, my brain stopped computing. I couldn't remember names, place faces, find words: to the extent that normal conversations became really laboured and difficult. Cocktail parties, or instances where I'd meet new people were a nightmare because I could see the confusion on their faces. I couldn't find my words (hah, not a problem I struggle with usually!) to enable me to maintain a normal conversation. Someone actually asked a friend if I'd had a stroke!

The list of side effects were endless for me and at the end really quite frightening however, at my final hospital appointment when I really was very poorly, I met a woman who had been taking it for years. She'd had six difficult weeks at the beginning and then all calmed and it reduced her chronic migraine from a 9 to a 2, which she felt she could live with.

Just to repeat, we are all very different and will react to meds in our own unique ways! Ask your family to be aware of your mental state and to advise you if things start to change. I had never had any mental health problems, never even mood changes with PMT, in fact despite the fact that I am hugely sensitive to hormone change it has never affected me mentally. However, at nine months on this med my moods became dark and I became angry. I'm a tough old bird anyway, but nobody would have dared to ‘mess' with me then!

« Last Edit: October 02, 2016, 11:34:28 AM by Elizabethrose »
Logged

2cats

  • Member
  • *
  • Posts: 535
Re: Topirimate for headaches
« Reply #7 on: October 09, 2016, 01:06:54 PM »

Well here I am nearly 2 weeks later, still taking Topiramate at 25mg per night, and mainly not getting any headaches.  My mood is still up and down but a little more stable so persevering for the time being....
I have a painful neck and shoulder which I think has contributed to the problem considerably over the last few months and so once I have had some treatment on these areas, I may taper off the topiramate again.  (A steroid injection into shoulder has been mentioned).

All good fun!
Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #8 on: October 10, 2016, 04:10:29 PM »

I'm very pleased to read that the migraines are still being controlled 2cats - long may it continue!

Good luck with the shoulder and neck treatment: I had a couple of steroid jabs in my hips about 15 years ago for trochanteric bursitis, they worked a treat! x
Logged

2cats

  • Member
  • *
  • Posts: 535
Re: Topirimate for headaches
« Reply #9 on: October 10, 2016, 06:05:40 PM »

Thank you Elizabethrose :) Coincidentally, my osteopath thinks it is bursitis in my shoulder.  Glad to hear the injections worked for you.  I hope they do for me! x
Logged

2cats

  • Member
  • *
  • Posts: 535
Re: Topirimate for headaches
« Reply #10 on: October 24, 2016, 09:31:01 AM »

Well it's been 6 weeks on Topiramate now and still only needing to take 25mg to control headaches and migraines.  I've had a couple of migraines and a couple of headaches in that time so that's an amazing improvement.  However,  I'm on very dodgy ground emotionally - still tearful, anxious and racing thoughts.  Even relaxation cds are becoming less relaxing as I can't seem to quieten down my mind!
When I have a really bad day, I think, that's it, no more Topiramate.  Then I can't face the thought of going back to migraines so I think I'll just try one more day....
In the meantime, I'm going to make a plan of all the other ways of tackling migraine, go back to my gp and ask her what other options I have and how long I should battle on, waiting for the side effects to wear off.
Do you ladies think that if it's Topiramate causing the problems, then they will go if I stop taking it?  I'm worried that it's created a change in my brain that will stick.  I'm obviously very sensitive to it as a drug, because 25mg is a very low dose.
Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #11 on: October 25, 2016, 07:24:10 PM »

Hi 2cats, sorry I'm away at the moment so haven't been on MM. Could I please ask what side effects you are experiencing from the Topirimate aside from the anxiety etc?
Logged

2cats

  • Member
  • *
  • Posts: 535
Re: Topirimate for headaches
« Reply #12 on: October 26, 2016, 01:49:06 PM »

Hi Elizabethrose,

Please don't apologise - there's no obligation to reply  ;)

I'm losing weight around my middle but I quite like that as I've been very slim all my life but even I've not managed to avoid putting on weight in my 40s!! So far nearly half a stone in 6 weeks.
I don't think there is anything else except the sadness, anxiety and racing thoughts.  And that seems to be worse some days than others, though it is bubbling under the surface generally daily.  Helpfully, the tearfulness has worn off again today.
 :)

Logged

Elizabethrose

  • Guest
Re: Topirimate for headaches
« Reply #13 on: October 26, 2016, 02:42:08 PM »

Hi 2cats

This med is tricky as people really do react differently to it. Chronic nausea and diarrhoea started the first/second day I took it! You've lost weight quickly which is a sure sign that you're reacting to it but you don't appear to have any of the other common side effects so it's really difficult to determine whether it's the med that's causing your anxiety.

Are you post meno or still peri, could your own hormones be surging or falling at the moment which may affect your moods? If all else is unchanged in your life it could of course be the Topirimate that's causing this though we can sometimes start reacting to things we've never reacted to before - possibly your HRT?

It took a little while for the Topirimate to leave my system but I don't remember it hanging around for too long. My anger left pretty quickly! It seems to have stopped me from vomiting though: I ate something that upset me recently and I would always have just automatically vomited out the offending item and though I felt desperately sick, I couldn't vomit despite even trying to force myself. Totally weird!

I recently read that adrenal surges, common in peri, can be assisted by maintaining our blood sugar levels. For the past couple of weeks I've been eating a slow release carb at bedtime to try to prevent the surge of wakefulness that suddenly hits me before a night flush kicks in. Normally I'm left wide awake for much of the night but since doing this I still wake before the flush but can immediately go back to sleep. Could you try eating little and often, this may help with the surges of anxiety? I think many women wake with a feeling of anxiety which may indicate an effect of low blood sugars. Worth a try? I'm just trying to find a way for you to stick with the Topirimate so there's no return of the pesky migs. I'm sorry though, I don't have any experience or knowledge of depression and anxiety so can't offer any advice there.

I don't know what your history is with depression or ADs but if you have a switched on GP I think I'd be tempted to return and discuss this. Do say you are aware that Topirimate can cause depression or mood changes, let them analyse your meds, they may be able to offer some suggestions.

I really wish you well and hope you find a solution x
Logged

2cats

  • Member
  • *
  • Posts: 535
Re: Topirimate for headaches
« Reply #14 on: November 08, 2016, 07:18:30 AM »

Just an update. I've stopped the Topiramate as intermittent sadness, crying and anxiety developed into everyday symptoms so after 7 weeks, I tapered off the drug.  It's been 8 days without it now, and after the first day of feeling anxious, I pretty much felt a whole lot better for the following 5 days.  No valium needed or thought about. 
However, on day 7, last Sunday, I woke up with the heavy heart, tears and anxiety which pretty much lasted all day, regardless of the CBT stuff I did, relaxation and yoga.  This continued through Monday until I finally relented and took 2.5mg valium just to give myself a break.  Which it did for several hours.
Decided to give propranolol 40mg a go last night and I slept from 10 till 3.40am but have been awake ever since.  It's 5 and a half years since I've felt this bad and it's scary to have come so far, only to find myself back in a hole again.
So, was it the Topiramate or was this on the cards anyway?  Did it just exacerbate an underlying issue?  Could it still be influencing my brain as the GP said to give it 10 days without the drug before going back to him?
Another tough day ahead of trying to get through work.  It's so mentally exhausting to live like this.
Apologies for such a downer of a post but I am feeling so fed up atm. :(
Logged
Pages: [1] 2