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Any Topiramate users about?

(14 Posts)
InappropriateGavels Sun 11-Feb-18 00:11:27

Hello,

I've been taking Topiramate for nearly two years now due to severe chronic migraines. It took until the middle of last year to find a dose that actually controlled them properly, so it's not been an easy ride. Anyone that's taken Topiramate will know how horrible the side effects can be and the higher the dose, the more tired you feel. It doesn't help that I do shift work now, so my days off are generally spent in bed because there's no consistency and I can't have a routine.

Since November I've been having pain and discomfort in my kidneys, one more than the other. Today I had a renal ultrasound scan to query a kidney stone - nothing of note on the scan except debris in my bladder which suggested an infection, however, two culture tests in both December and January proved to be negative. In December I was prescribed a course of anti-biotics just in case anyway.

I'm aware that Topiramate can cause kidney stones. However, has anyone here had issues with it? It's the only thing that's given me relief from the daily migraines so I don't really want to stop it. My GRD levels last year were 80, which is lower than it should be (90-120) for a person of my age, however, no idea if that's related to taking Topiramate as that's not been run again since.

I see my neurologist again soon, so will obviously ask for advice, but there's still the worry that he'll suggest to come off it and I'll be left with daily migraines that I can't cope with and no alternative to use. I don't respond well to triptans (sumatriptan doesn't work at all, tried in multiple forms and zolmitriptan only had a small effect) they make me feel awful, sick and tired, so while some people can take them and have a relatively normal time afterwards, I take them and am left with a worse migraine aura than I had with the original migraine attack, but the pain has gone.

Any advice gratefully received grin

Dermymc Sun 11-Feb-18 00:29:35

I used to be on them but could not deal with the side effects.

I tried acupuncture and its worked for 2 years!

lyrebird1 Sun 11-Feb-18 11:44:30

When I was taking them, they made me very thirsty, so I ended up drinking about 3l of water a day, which I was told to do to help prevent kidney stones.

However, if you do have to come off them, don't despair - there are lots of other things your neurologist can try. Mine came up with a plan of about 5 different treatments that the GP could work through to find the best one. Drug-wise, I had amitriptyline, propanolol, candesartan and verapamil to try (all work differently), and if none of those work, there is an occipital nerve block, or botox injections. You could also ask to be referred to a specialist headache clinic, if you haven't been already.

I am sure you will find an option that suits you - good luck!

partydownseason2 Sun 11-Feb-18 11:49:13

I took it (not for migraines) and the side effects were too much for me. I had kidney stones and felt generally dehydrated. It also changed my moods horribly. Good luck, I know finding the right dose/medication can take time but don’t accept feeling bad as the only way. Its not a choice between being ill and awful side effects.

TheFairyCaravan Sun 11-Feb-18 11:53:11

I take it for migraines. I’ve not had any side effects really,tbh.

I second trying acupuncture. I used to have migraines almost every day, and had 5 lots of Botox, now I have 2 or 3 a month all linked to hormones. I was sceptical when I went first but it’s been life changing.

InappropriateGavels Sun 11-Feb-18 18:07:58

lyrebird1 - Thanks for that smile I have a headache specialist already as I also have Paroxysmal Hemicrania which we're having some trouble controlling at the moment. I took Verapamil in the past when it was thought I had just cluster headaches - oh dear, the experience was horrible, I thought my heart was going to explode, couldn't walk up the stairs without passing out, had to give up all exercise, and the constipation was so bad it literally ripped me a new one and took a good six months to heal. The conclusion was, because I'm a very fit person in general with a low resting heart rate and good blood pressure, using something like made my heart even slower and dropped my blood pressure way too low and made my heart rate irregular instead of slowing it further. I've heard of the use of Propranolol before, it sounds similar to Verapamil in it's action.

Botox might be the answer here - already get told I have resting bitch face, not being able to move parts of it for a while won't make much difference grin.

TheFairyCaravan - Once I've exhausted everything else I might turn to acupuncture. Even with this medication I still get one every couple of weeks at the moment, believed to be related to my body's inability to control blood flow, hence the Topiramate being so effective.

bostonkremekrazy Sun 11-Feb-18 22:55:10

I've taken topiramate for 5 years - didn't cure my migranes....still had around 15 migrane days per month on that alone.
Now have botox also which seems to have made the most difference. Where I live the criteria is very strict to receive it -
at least 5 meds tried,
more than 8 migranes per month,
and not using headache pills....
I waited about 2 years sadly, but I think its easier now to get it thank goodness!
Like you OP i have a very low BP, but a 24 hour tape came back okay. sometimes I have palpitations, but I don't panic too much. The migranes are way worse....
Acupuncture, and the occipital nerve block did not work for me.

There are lots of options if the topiramate alone isn't working enough for you OP. The side effects can be awful....

shewolfmum Sun 11-Feb-18 23:30:27

Oh my..don't exhaust a list of drugs with side effects! Try accupuncture without any...gotta be worth a go?

youvegottobekidding Mon 12-Feb-18 22:15:43

I've been on it for 8 yrs, 200mg a day (50g in eve & 50g in morning) for migraine prevention, but I still get headaches/migraines so not really doing a lot of prevention, still better than what I was before being on Topiramate. Side effects at first were really odd/awful - it was the mindfuck that struck me first - I was in Tesco once - took me about 45 mins just to decide which size of jeans to get my daughter!

I can't say I've had any bladder problems/ kidney stones whist being on them. I'm also on Amitriptyline, been on that for about 10 years, 100mg a night.

Because my migraines are hormonal linked - I also use an estrogen patch - I'm suppose to put in on a week before I start my period (changed once a week) a week during my period & a week after. That worked at the beginning but I find now that I only need to wear one the day I start my period, then 2 the week during my period & thats it.

I've had two rounds of Botox in the past & that hurt like hell - did did all for my headaches, just felt like I had a brick permanently embedded in my forehead. Oh & it made my eyebrows droop, causing my upper eyelids to droop - I could not apply eyeliner for several months & mascara ended up touching my eyebrows! My eyebrows are actually wonky now - one is higher than the other, never use to be like this!

For pain relief when the headaches/migraine strikes I take naproxen or/and naratriptan. Anadin extra is good too. I've had that stinking Aussie flu though last week so was taking pain killers round the clock & had to take co-codamol so I'm suffering from re-bound headaches now!

Hope you find something that works for you, headaches/migraines really are debilitating.

bostonkremekrazy Tue 13-Feb-18 07:46:54

You'vegottobekidding have you tried increasing the dose of topiramate? 50mg is v low morning & night. Thats a starting dose. You can go up to 400mg daily if you can put up with the side effects.
Itsa really good drug but you may have been on too low a dose for too long....

youvegottobekidding Tue 13-Feb-18 19:21:39

It was a dr at a headache clinic that started me on them. He did mention about increasing the dosage, but decided against it as he thought I'd be 'quite ill' if I was to take any more. Then he stopped working there ( went on sick leave apparently) then the clinic shut down & I was referred back to my GP who referred me to a neurologist at the hospital. I've seen him maybe about 6 or seven times in the last 3 years, he scares me a bit! He reminds me of that dr of Holby, Hansen or something!

I did go to my GP year, I wanted to get off all my tablets, I wanted to start again, I just felt that nothing was really working, I still get the headaches yet I'm taking these tablets & they're really doing FA. I was on 150 of amitriptyline & got it down to 80mg but recently I've needed to up again to 100mg. I've not reduced the topiramate because I'm tackling one tablet at a time. Might be bloody years before I can get of Amitriptyline though - I wish I hadn't gone back on it after having my second child. Although it was absolutely horrendous to abruptly stop when I found out I was pregnant - I've proved I can stop taking them - just got to get your mind & body to adjust to not having them anymore. First migraine I got a week after having my son & I rung doctors & said I need my amitriptyline - they gave me it. I didn't have any headaches for the last 8 wks in pregnancy.

bostonkremekrazy Tue 13-Feb-18 19:45:37

That sounds like you are being so badly looked after. I'm surprised the GP just prescribes it for you....rubbish care.
You may be better coming off the topiramate then tackling the amitriptaline then....if you feel it is not working. Its pointless being on a med that isnt helping dont you think?
The topiramate will be easier than the ami to change as its not addictive.
I hope something changes for you!

tangledyarn Tue 13-Feb-18 23:12:54

youvegottobekidding Thats so funny the headache neurologist I see also reminds me of hansen. I wonder if its the same guy.
I was on topirimate for 6 months for migraine..I was fortunate to not have any kidney issues. I take gapabentin now and have botox which is working better although things still aren't brill.

InappropriateGavels Sun 18-Feb-18 22:28:40

Saw my headache specialist during the week - he's treating my PH more than my migraines but still gave me some advice about the migraines. He's actually suggested I up the dose for a while because my migraines have been more frequent recently, drink a lot more to deal with the flank pain, and then once the migraines are back under control come back down to my current dose.

Drinking a minimum of 3 litres per day (5 if exercising) is proving to be a struggle though.

Youvegottobekidding - it sounds like you've had terrible care shock. Remember, you're always allowed to ask for a second or a third opinion!

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