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 Diamox not working

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morrise
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PostSubject: Diamox not working   Thu Jun 14, 2012 6:50 pm

Hi,

Was back at my Neuro today. He doesn't think the diamox is working and I am now to get a LP in two weeks time and then get one every 6 weeks for next couple of months. He has also now prescribed me Topamax to see if they will help with the headaches. I will have have a read of the forums about Topamax. I have to start reducing the my diamox intake of the next few weeks as he doesn't want me to come off it straight away as I am on 1500mg a day. I can only hope things will start to get better. Just trying to Stay positive about it all Very Happy

If anyone has any feedback on Topamax i'd be grateful for the advice.

Thanks again to this forum I find it so helpful in helping me deal with horrible condition thank you

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Wylee
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PostSubject: Re: Diamox not working   Thu Jun 14, 2012 7:10 pm

So glad to hear that your doc is willing to work with you on finding the right meds. Sssooooooo important!!
I have not tried Topamax, but many, many others have. One of the side effects is that it CAN cause cognitive issues. It can make you feel like your brain is not cooperating. Do not let this hinder your attempt at using it. The side effect does not hit everyone! You may find that it merely gets rid of your headaches!
Before I had my shunt installed, my doc had me try many different meds. I kept a log of how each one made me feel, what dose I was on, etc. There are really good forms available on this website, including a medication log. I highly recommend that you use it. You may find that as you increase the dose of a certain med that it makes you feel worse where as a lower dose worked well. Having this info in the log will help with that.
Again, many folks have used Topamax with good results, so I hope you will find the same.
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morrise
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PostSubject: Re: Diamox not working   Thu Jun 28, 2012 10:38 pm

Hi,
Just an update.
Got my Lumbar Puncture yesterday which I'll be having every 6 weeks now till the end of the of the year. My opening pressure was 28 and they drained it and lowered it to 12. The strange thing is I'm waiting on the low pressure headache. I've been feeling really well today which has been awhile since I've felt like this. Smile
I've also reduced my diamox from 1500mg to 1000mg as the LP proved it wasn't working any longer so should be free from it in the next two months.

I also started Topamax two weeks ago, my experience hasn't been too bad yet, I'm only on 25g once a day just before bed I have an aciddy feeling in my stomach some days but I haven't lost my appetite yet!! but the headaches have eased up a lot. So my doc has agreed I don't need to up my dose yet if I'm happy with the small dose.

My doc doesn't want me worrying or thinking about it too much so won't give me a straight answer but I think its most likely I will need surgery. It will all be reviewed in December after all the LP's but I just don't think that I can continue to get LP's forever since the medication is not working. At what point does the Doc make the decision??
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Wylee
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PostSubject: Re: Diamox not working   Fri Jun 29, 2012 12:15 am

That is great news that you are feeling better after your lp. I never did get a low pressure headache after having a lp, so don't be too surprised if one doesn't happen. I do feel very uneasy about the idea of having lp's so often as a way to keep your pressure down. Having a lumbar puncture is not without risks, and the more you have the more risky they become. Your docs need to be looking at other means of keeping your pressure down, be it using meds or surgery, and then use the lp's when they have to, not as a means to an end.
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morrise
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PostSubject: Re: Diamox not working   Fri Jun 29, 2012 12:31 am

I agree!!
I always thought you would always get a headache as this is my 6th one over the 2 years and I normally get one. Be great if its stays away Smile
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medmisfit
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PostSubject: Re: Diamox not working   Fri Jun 29, 2012 4:02 am

I'm so glad you've found some relief! I agree with Linda about the LP's though..I've always been told they're supposed to be a last resort, so when it gets to the point you need them to maintain they consider a shunt. I'd definitely weigh the pros & cons of each before subjecting yourself to routine LP's.
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