topiramate

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topiramate

Post by Sharron Jennings on Sat Jul 09, 2011 2:14 am

Hello, i was just wondering if anyone else on topiramate gets pain in their nose as a side effect? i have told my DR about it but as usual he just raises his eyebrows so would love to know someone else has it and im not just mad!
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Re: topiramate

Post by Katie on Sat Jul 09, 2011 2:35 am

Not one I had- I did get the wierd pins and needles in my hands and feet.

But that may have been the start of the reaction I had to it. Hope this settles for you. You might do better calling the Dr who prescribed the drug. I went to my GP who said I had eczema. Called the neurology team and they yelped. Turned out I was very intolerant and had broken out with the 'stop using now' rash.
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Re: topiramate

Post by Tee on Sat Jul 09, 2011 5:12 am

Hi

I did not have that one either - had the pins and needles, sickness and la la effect. Can you email the consultant?
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Re: topiramate

Post by whitzendJane on Sat Jul 09, 2011 6:55 am

It also could be a migraine symptom..this can be an autonomic symptom.

This kind of thing can happen in cluster headaches as well as migs and is usually on the effected side (your predominant pain side). I get it all the time and somedays it's like someones just punched you in the nose (even makes my eyes and that side of the nose run)..other days it's a dull ache feeling.

You can start with any range to 'new' symptoms (of the joy) so it could be the Topiramate or it could be the migs.

Don't remember anyone else reporting this before but my memory fails me frequently so I could be wrong.

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Re: topiramate

Post by stargirl on Mon Jul 25, 2011 7:14 am

Not a side effect I had (was on 100mg a day). The only side effect I had was weight loss.

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Re: topiramate

Post by pandora77 on Thu Feb 02, 2012 11:44 am

I have just started on Topiramate and am only at 25 mg a day and I get tingling at the endof my nose which I'm sure is related to the drug. Also at night have had quite painful pins and needles effect.

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Re: topiramate

Post by Tee on Sat Feb 04, 2012 10:29 am

Pins and needles is quite common - end of nose is an interesting one Smile........... lets hope they settle.......

Do let us know how you get on ..

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Re: topiramate

Post by pīwakawaka on Mon Mar 12, 2012 6:02 pm

Tried Topamax, but I was getting very confused. My wife was finding things like the dish washing liquid in the fridge or the milk in the microwave. Both she and I thought I was developing dementia until we learned that it was most likely the medication. It also wiped out my libido completely, and was probably responsible for a large kidney stone I'm on a waiting list to have removed. I don't think my libido ever returned to the pre Topamax level, but otherwise I did eventually return to my "normal" self.

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Re: topiramate

Post by Tee on Tue Mar 13, 2012 12:11 am

Out of all the meds this is the one that scares me the most - when it works, it seems to work great, but the side effects are horrid..... I was really worried when they started to look at giving it to people in the USA for weight loss.......... I know the FDA are looking at it, but it worries me............

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Re: topiramate

Post by Loki on Fri Mar 16, 2012 10:42 pm

The idea that they will hand this out for weight loss is nothing sort of terrifying. I know that I am really succeptable to sideaffects, but then I also know that a good potion of the population is going to be like me... I'm on 100mg and my old neurologist was talking about putting me up to 400mg and at the moment I can't hold a plat in one hand because its too heavy.

I've always had weak muscles due to the hypermobility but the topiriate has made it so much worse, I can't write more than 3 lines now without my arms hurting.

And thats not including that fact is I lean forward I can now hold my collar bone... I'm even more ditzy (Believe it or not) and so far, it has done jack all for the pain in my head *Sigh* I'll likely get yanked off it soon and get put onto something else I haven't tried yet.

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Re: topiramate

Post by Nekoha on Sat Mar 17, 2012 1:14 am

You know, I adored Topamax in the States. It worked fabulously, and I had 0 side effects except I could never gain weight. But when they finally imported it to Japan and I tried it again, I got violently ill. I thought I was going crazy - all sorts of very weird side effects - tingling, muscle weakness, feeling la-la (what a perfect description!). So I was taken off it and now on no preventative. The doctors here said that they thought I was reacting to an inactive ingredient that was different in Japan vs the US... but I don't know.
My mom did tell me the other day that her doctor wants to put her on Topamax, but that guy needs to be shut down for malpractice as he has her on more than 40 medications treating side effects of side effects, and keeps prescribing more. (Yes, my mom is a drug-seeker, so he is not the only issue, but still!) My mom hasn't had migraines for 15 years, and suddenly she had a spurt of them, getting them every day. Instead of doing an MRI or asking about her painkiller use (she uses Oxycontin, Fioricet, and OTC meds every day...), he wants to prescribe a preventative.
Most doctors in the US are too medication-happy, IMHO. The FDA would be insane to prescribe Topamax for weight loss, but I imagine that it will happen...

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Re: topiramate

Post by pīwakawaka on Sat Mar 17, 2012 9:31 am

Here the health system keeps track of the amount of medicines doctors prescribe closely monitors doctors who are the biggest prescribers. I suspect this is as a cost saving measure rather than in the interests of the patients. I've been fortunate that the 3 GPs I've had over the last 25 years have thought of medicines as a necessary evil and seem to prescribe only when no alternative is available.

I like the comment one of them made, when my wife asked why he wasn't going to prescribe an alternative medication for me when the one I was on didn't work. His reply, as best I can recall it was
"All medicines are poisons, but some have good side effects".
It struck me at the time as being good sense, and it still does.

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Re: topiramate

Post by Tee on Sat Mar 17, 2012 10:57 am

[quote="
"All medicines are poisons, but some have good side effects".[/quote]

Oh Piwakakwka - I love that

So going to use that Smile x

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Re: topiramate

Post by pīwakawaka on Sat Mar 17, 2012 12:34 pm

Use it as much as you wish. I'm sure the doctor concerned would be delighted.

Out of curiosity, can a General practitioner prescribe topiramates in the UK? Some of the discussion above seems to imply that they do not. They can here.

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Re: topiramate

Post by Loki on Mon Mar 19, 2012 5:41 am

My Neruo was the one who told me I should take it, my GP fills my scripts for it, but I think that is based on what my neuro says really

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Re: topiramate

Post by Tee on Tue Mar 20, 2012 8:43 pm

Do you know I am not sure.......... the UK GPs tend to refer you to a Consultant for serious illness..... which I think is a good thing, as I have found even within consultants - there are specialists... The GPS then work with the consultants to make sure you get the medication and help monitor side effects....

If you are in the UK and have chronic migraine you really do need to see a migraine neurologist as there are medications which only they can get - and even some which are not licensed in this country - ie Flunarazine........

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Re: topiramate

Post by Loki on Wed Mar 21, 2012 10:07 am

Never even heard of that one!

Neurologists can be good, and less wave a magic hand over a book and go "lets try this one"

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Re: topiramate

Post by Tee on Wed Mar 21, 2012 11:23 am

Wink Lots of mes out there - just wish the docs would tell people about them...

Flunarazine is a calcium channel blocker and can give some good results....

http://migrainetalk.forumotion.co.uk/t27-general-discussion-calcium-channel-blockers-flunarizine-verapamil

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Re: topiramate

Post by sisterphonetica on Fri Apr 06, 2012 12:53 am

Hello, at last I've found you! I with I'd known about this place before I started all these treatments!


I've been on topiramate for a few weeks now, at first it was making me very tearful and I had some symptoms of pins and needles at first. I'm only on 25mg (until this morning when I went up to 50 mg). I've been feeling completely exhausted. But can't sleep at night. And then the past couple of days I've been noticing palpitations. Last night I started feeling really nauseous, not migraine nauseous although I do have a little bit of a headache but not enough to Zomig myself. I increased my dose this morning as prescribed and boom, palpitations all morning. One of my friends (a similar age to me) just had a heart attack and I was starting to panic that I had an undiagnosed heart condition but then realised that I better look up the topiramate side effects again, and there it was: Symptoms of metabolic acidosis = fatigue, changes in heartbeat. Great. Thankfully I go back to my migraine clinic next week. I might just go back to my 25mg dose until I speak to him. Any thoughts?
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Re: topiramate

Post by Tee on Fri Apr 06, 2012 2:47 am

Hello there..... This drug is a bit like an anti Marmite - it either likes you or does not Shocked

When it works you can get some great results with it, but the side effects of this one dcan be horrid....... in saying that, we seem to see that people get a little worse with each rise in dose which then settles after a few days........ if you are worried though do call your GP........ but it is quite normal to get the pins and needles (in the hands mostly), heart beat changes and tiredness........... they do in a lot of people settle and really you should give any new med a good 3 mths trail (if you can) to see how you get on with it - this one builds in the system so takes a wee while to get working and you cannot just stop it you have to go back down in the same way you went up.

The only thing I would suggest when you are on this one - is to get someone who is close to you to read the side effects and just keep an eye on you....... it can effect your emotions and sometimes you are not clear headed enough to see that side effect, but someone close to you will (hopefully) spot it..........

Do let us know how you get on at the clinic next week x

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Re: topiramate

Post by sisterphonetica on Fri Apr 06, 2012 2:56 am

I've managed to lose my side effect leaflet!

I live alone, my cats are no use at looking after me, but I'm seeing my best friend tomorrow and on Monday so hopefully all will be well (I've told him to watch out for me going a bit loopy). Thanks you for your wise words. I did panic a little bit when I felt my heartbeat pitterpat but felt better when I realised it was the medication. I know I have to give it a chance but it's scary and it's typical that it affects me when on holiday and the GP will be closed til Tuesday after today!

I've been off work today and have achieved nothing due to feeling rubbish! Hoping tomorrow will be better.

Thanks for info!
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Re: topiramate

Post by sisterphonetica on Fri Apr 06, 2012 2:58 am

Oh oh, here comes the numb face. at least I know what that is.
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Re: topiramate

Post by Tee on Fri Apr 06, 2012 10:00 am

hugs xx

This is the official side effects blurb..........
http://www.topamax-sideeffects.org/

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Re: topiramate

Post by sisterphonetica on Fri Apr 06, 2012 6:34 pm

That's pretty incomplete information compared to the leaflet the pharmacist gave me, which I then lost... The palpitations were so bad last night that I had to take a sleeping tablet as I couldn't settle despite being exhausted. But I have survived the first day of treatment at 50mg. Time to do it all over again.
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Re: topiramate

Post by Tee on Fri Apr 06, 2012 10:19 pm

One step at a time - good luck xx

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