Topamax experience

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Topamax experience

Post  annabella on Mon Oct 18, 2010 7:24 pm

I thought i would trial Topamax to deal with my daily chronic headaches. After 3 days I was totally depressed, very anxious and extremely angry, so angry it was scary to me and others. Needless to say, they are now languishing in the bottom of the bin.

I have requested that, in my medical notes, under the heading ''allergies'' there be placed a notice saying they are never to be prescribed to me again.

Just passing my experience on to others who are probably not all that surprised.

Rolling Eyes
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topamax troubles

Post  lentils on Tue Oct 19, 2010 2:02 am

Others on this forum have had intolerable side effects from topamax also. Is there anything else you can try?

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Re: Topamax experience

Post  annabella on Tue Oct 19, 2010 4:34 am

Thank you for your thoughts - i have just about tried the lot now over the past 30 years - nerve ablation - antidepressants - all the daily meds to try to head off the migraines make me sleepy and irritable - I use the Triptan Maxalt, which is a wafer that melts on the tongue, it works well for me. I will go back through the forums to see if i can pick up some helpful hints and ask my doctor about them - unfortunately, a lot of what the USA posters talk about are definitely not available in Australia - we are way behind in a lot of medication options.

The government (thanks to the junkies) are trying to restrict the sale of codeine alone products - they are combining it with paracetamol, which is not a good combination for me - aspirin and codeine work much better. So that is one more choice that is being taken away from me.

I will keep searching though Very Happy
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Re: Topamax experience

Post  pen on Tue Oct 19, 2010 5:49 am

Anabella, I posted quite an article on Topomax on my FB group if you would care to read it......
Cant say it's very encouraging......
It is from that Tuliv site, so not sure of its accuracy....


http://www.facebook.com/group.php?gid=34139546290


Pen

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topamax

Post  lentils on Tue Oct 19, 2010 12:29 pm

I've been taking topamax for a year. For me the side effects have been manageable and for the first 8 months I had less than one migraine per month.

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Re: Topamax experience

Post  jwar on Tue Oct 19, 2010 1:34 pm

I would read that article that Pen is posting with a large grain of salt. It is full of blatant inaccuracies and is written by a website trying to sell their own herbal supplements to prevent migraine. The entire purpose of the article is to talk about how bad the current drug regimes are and how good their herbal supplements are - clearly not written by anyone that knows or cares about what they're saying!
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Re: Topamax experience

Post  pen on Tue Oct 19, 2010 2:18 pm

I posted it with that warning Jayme.

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Re: Topamax experience

Post  lesherb on Tue Oct 19, 2010 2:42 pm

I've posted this many times but I am just a few weeks from turning 50, so I am going to take my "senior citizen, repeating things over and over again, get out of jail free" pass now.

Topamax is horrid! I am very happy it works for some people but when I took it, I was turned into a completely different person. I had no control over my temper and my IQ dropped by at least 50 points (luckily, I think I recouped my losses).

As for codeine, can your doctor prescribe it for you? I know it's an OTC med is other countries so I am guessing it is in Australia, also. If so, so sorry it's being tampered with because of abusers.

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topamax

Post  lentils on Tue Oct 19, 2010 3:06 pm

Some friends of friends who suffer from migraines live in downtown Sydney and claim they get excellent care. I live (lived, I'm moving back to the US, in a few weeks) in the suburbs and its been hit or miss. Some people here have stated that codeine causes rebounds, and I think it does for me. One thing that is available in Australia is botox.


Last edited by lentils on Tue Oct 19, 2010 3:11 pm; edited 1 time in total (Reason for editing : clarity)

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Re: Topamax experience

Post  joshp on Tue Oct 19, 2010 4:41 pm

annabella wrote:unfortunately, a lot of what the USA posters talk about are definitely not available in Australia - we are way behind in a lot of medication options.

Hi annabella,

I am also in Queensland Australia and I agree. I went to a neurologist and he basically told me to avoid known triggers and take three panadol or three aspirin when I feel a migraine coming on. Then he charged me $300.
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Re: Topamax experience

Post  marion on Tue Oct 19, 2010 5:16 pm

Hi Annabella and Josh,

Same problems, I'm on the Gold Coast. Doctors/neurologists look at me blankly. Everything I suggest as a cause for my problems sneered at and totally disregarded even though I state clearly "Look I know I'm grasping at straws but..."

Really have no idea where to turn to next. This seems to be a huge problem with our small population, finding md's with sufficient experience or willingness to look into options incredibly difficult.

If you would like to meet one day that would be nice. PM me if you would like to compare notes.
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Re: Topamax experience

Post  pen on Tue Oct 19, 2010 5:55 pm

I think our experiences are similar in the Uk to Australia.
America has a lot more drugs on offer.
I havent even heard of some of the ones they discuss here.

Topomax I know though. I refused to take it.
Tried a lot of preventatives, but that one and one other I said no,.

P

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Re: Topamax experience

Post  Migrainegirl on Tue Oct 19, 2010 9:44 pm

After 5 days on Topomax I was so nauseaus I couldn't get out of bed. I could probably have adjusted go how weird it made things taste, but no way to live with that. I know others it has worked for. Don't feel bad about Austrailian doctors not being much help. From what I can tell they really don't know how to treat this effectively anywhere and just try random drugs till something works or the patient gives up in disgust.
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Re: Topamax experience

Post  joshp on Tue Oct 19, 2010 10:23 pm

Regarding Topamax, I tried it up to (I think) 200mg, and hardly noticed any side-effects at all - just a little lethargy on the highest dosage. It made not one whit of difference to my headaches, but still...
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Re: Topamax experience

Post  lentils on Tue Oct 19, 2010 11:44 pm

It made not one whit of difference to my headaches, but still...[/quote]

I can almost use topamax as an abortive, in addition to a preventative. It makes me wonder how many diseases are under the umbrella of migraine.

As far as US medicine and Australia differences...

I think if there were some miraculous cure that Australians were being denied, it would be a problem. But the treatments often seem incomplete or the docs end up treating the side effects of the meds they are prescribing (in the US). In the US, one can go to the ER with a migraine, but I've learned to live without that and now I prefer dealing with migraines in my own bed. Also, sometimes patients in the US have to abandon their meds when their insurance plans refuse to pay for them and the costs become too high for them. That doesn't happen in AU or in the UK. It does seem to me that doctors in AU are reluctant to prescribe-maybe they are told to keep costs down?

I went to see a GP in the US without insurance and it cost $80US. I got a script filled for maxalt long before it was available in AU and I also got a script for topamax because my neuro in AU refused to write me a script for it. Getting the scripts filled was more expensive. I think I got 30 topamax (1/2 of the prescription) so I could do a trial. I had no trouble bringing the drugs into Australia.My friend is a nurse practictioner working at a pharmacy in the US and she sees patients from other countries frequently.

On the US plus side, there are so many doctors, I'm looking forward to finding a neuro who knows more about the disease than I do, and who really listens to me. I'm keeping my fingers crossed.

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Re: Topamax experience

Post  annabella on Wed Oct 20, 2010 2:04 am

Thanks everyone for your input. It does seem that there are no ''one size fits all'' cure out there and i must say that i am disappointed that Topamax had such a negative affect on me but as i age i seem to be more sensitive to certain drugs and i just need to keep trying things for the daily headaches.

I take Lyrica 3x daily and a beta blocker 2x daily and Maxalt as needed, but have had to stop taking the large amounts of aspirin as it had the effect of making me anemic, which has been a huge problem for me.

On the doctor side of things, i must have a whinge. i am sick to death of being treated as either a malingerer or drug addict, you can almost hear the sigh from the doctor as soon as you say the word ''migraine'', it makes me furious. i have had migraines since i was ten and have suffered some terrible attacks where i thought i would be better off not living. i am sure a lot of you would understand this, but we keep going and keep trying to manage and it does not help when we keep being fobbed off or sent to psychologists to help with our ''anger issues''. if i am angry it's because i am frustrated and in pain and not being listened to, what do i have to do? vomit in their lap?

So thanks again for your support sunny
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Re: Topamax experience

Post  Anna's Mom on Wed Oct 20, 2010 7:37 am

Dr. Diamond just did rounds, and I asked if Anna could go back on Topamax (this may be the fourth time of trying it).

She said it needs to be brand name Topamax. Generics don't work as well when it comes to Topamax, she said. Brand name gets through the brain barrier better, I believe she said.

So the nurse is working on getting prior authorization to get brand name Topamax approved by our insurance today. I'm hopeful in trying it again.

Fingers crossed.

Cheryl
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topamax

Post  lentils on Wed Oct 20, 2010 3:10 pm

Good luck with the new trial.

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Re: Topamax experience

Post  annabella on Wed Oct 20, 2010 3:34 pm

yes, good luck from me as well, for the new trial.
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Re: Topamax experience

Post  AZgirl on Wed Oct 20, 2010 6:14 pm

I'm on generic topamax (100mg in am and 200mg in pm) and have been for 17 months. I believe it has been helpful. I don't know about how it has decreased the frequency or severity of the pain, but overall I know it has been helpful. (althought right now I am only taking a little bit of that dose and will resume the full dose on November 1---long story).

I do not have any side effects at all. Food and carbonated beverages taste fine, the tingling in my hands and feet has gone away, and I don't have much brain-spacy-ness. I do have some memory difficulty but not because of the meds.

I am a supporter of topamax.
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Re: Topamax experience

Post  annabella on Thu Oct 21, 2010 12:54 am

Yes, good luck Anna flower
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Re: Topamax experience

Post  HeelerLady on Thu Oct 21, 2010 7:11 am

Cheryl - Hope this round helps Anna. She needs a break - I can't imagine living the way she has to.

AZgirl - glad that it works for you. Smile

Personally - I think it's evil. But then again the wacko neuro had me on an antidepressant at the same time (both times) and I had nasty reactions to it. I don't know what would have happened if we just tried it alone but after those experiences, I don't think I'd even want to try it.
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Re: Topamax experience

Post  Anna's Mom on Wed Dec 01, 2010 9:35 am

It took several weeks for appeals, but finally both insurances covered brand name Topamax for Anna. She started it a couple days ago. Goodness, brand name is expensive stuff! Hoping it helps more than generic did (which she tried for three different periods of time).

Cheryl
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topamax

Post  lentils on Wed Dec 01, 2010 9:54 am

I bought topamax without insurance the first time I used it. I think I got generic and I remember 30 pills costing about $75. This was a couple of years ago.

I would start out with the lowest dose possible and monitor for side effects. Good Luck with it.

I haven't been taking it for a month. Mainly because I am taking diamox off and on and also there are some reports that after awhile on topamax some people can stop, with no recurrence of migraines. I have had only one migraine in 3 weeks, but a major move usually means less migraines for me for awhile, for some reason, so it could be due to that.

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Re: Topamax experience

Post  Anna's Mom on Wed Dec 01, 2010 10:16 am

Good link:

http://headaches.about.com/cs/prevention/a/topamax_dos.htm
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Re: Topamax experience

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