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 
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General health
Any Topiramate users about?
InappropriateGavels · 11/02/2018 00:11
lyrebird1 - Thanks for that 
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 .
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.
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 
. Remember, you're always allowed to ask for a second or a third opinion!
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