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The UKFibromyalgia Forums • View topic - Topamax??? Also fluid on knee



Topamax??? Also fluid on knee

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Topamax??? Also fluid on knee

Postby pinky1 » Sun Apr 13, 2014 8:48 pm

Hey folks,
I've done a quick search but I was wondering if anyone recent is on or had topamax, what dosage you started on and whats the recommended dose to go to? Thats if anyone knows? I'm back on amitriptyline but have to be careful because I have a low seizure threshold and the consultant at the seizure clinic suggested I came off them as they can lower seizure threshold. Gabapentin was terrible and my GP wasn't keen on trying pregablin because she thought I may have similar side effects. Can't take tramadol because we think that is what caused the last seizure. So now I want to suggest topamax.

Also I woke up very early in the morning in agony over a week ago with a very painful knee. Seems like theres a small amount of fluid on it, anyone else had this? Going to try and see my GP tomorrow
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Re: Topamax??? Also fluid on knee

Postby bluecath » Sun Apr 13, 2014 9:29 pm

I suffer with a painful knee, which swells on and off. I had it drained once and they removed 30ml of fluid and then injected it with steroid, which sorted it for quite a while.
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Re: Topamax??? Also fluid on knee

Postby paulamcl » Sun Apr 13, 2014 11:03 pm

Hi yes i'm on Topamax, I started off on 25mg twice a day increasing to 100mg twice a day. I've tried just about every drug available for fibro from pregabalin, amitriptyline, duloxetine, tramadol etc. I'm on Topamax 100mg twice a day, 40mg amitriptyline and co-dyramol 30/500mg now and the Topamax has been the best out of all of them.
The pregabalin made me put on a horrendous amount of weight, never did much for the pain or the tiredness but so far the weight is slowly coming off again, my pain has been cut in half and im still tired but im not exhausted like I was when I was on pregabalin. Everyone reacts differently to drugs, it's all trial and error really. I hope that helps :)
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Re: Topamax??? Also fluid on knee

Postby Roger Rabbit » Mon Apr 14, 2014 7:56 am

Hi
I am on Topamax 150mg morning and night. Originally for migraine. Starting of 25mg and building up 50mg etc. I tried every drug going for my migraine over a couple of years whilst in daily chronic pain, I was already on Propranolol 320mg (yes I know another high dose) in the end I read up about Topomax on the interrnet and suggested to the neurologist that I went on it in combination with Proranolol. He wasn't happy at the time as it was expensive as I am going back 10 years it was the best thing I ever did, the migraines didn't stop immediately, but I went from being in hospital with daily migraines to having migraines once or twice a week and then getting less frequent as the time went on. I even lost half stone! There are side effects as with all drugs, mine were constant pins and needles in my hands and arms, but that was nothing to chronic pain! the pins and needles went over time. If Topomax worked for pain in my head, give it a go for Fibro, everyone is different. If you want to know anything else just ask!
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Re: Topamax??? Also fluid on knee

Postby pinky1 » Mon Apr 14, 2014 8:19 am

Thanks folks. Hoping to get an appointment with my GP today to look at my knee and I'm going to suggested the topamax
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Re: Topamax??? Also fluid on knee

Postby FluppyPuffy » Mon Apr 14, 2014 9:58 am

Looking on FaceBook pinky, there have been a few comments about Topamax possibly being the cause of/linked to kidney stones developing in some who take it, so it may be something to bear in mind when seeing your GP about it. Also, when I asked my GP about it, I was told at the time that it could only be prescribed by a neurologist. Admittedly this was a good while ago, and the rules and regs concerning the prescribing of meds do change. I just thought it might be worth a mention tho, in case you're told it's not available but without much of a reason why.


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Re: Topamax??? Also fluid on knee

Postby pinky1 » Mon Apr 14, 2014 10:11 am

Thanks Fluppy,
I'm hoping I'll have a better chance of getting it because it would give se seizure protection and there's so many of the usual meds I'm not allowed to take. The amitriptyline was only upped to 30mg but that GP was concerned because the more it's upped the more chances of a seizure. I'll see where the land lies. Have an appointment for this afternoon.
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Re: Topamax??? Also fluid on knee

Postby FluppyPuffy » Mon Apr 14, 2014 10:29 am

:goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: pinky :fingerscrossed: :fingerscrossed: :fingerscrossed:


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Re: Topamax??? Also fluid on knee

Postby pinky1 » Mon Apr 14, 2014 7:23 pm

No joy with the Topamax :-( You were right Fluppy, she said I would need to see a nureolgist. One good thing, I've finally been referred to the pain clinic, not expecting miracles but at least it's something.
The fluid on my knee is bursitis, have to go back in two weeks and get a steroid injection if it's still there
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Re: Topamax??? Also fluid on knee

Postby FluppyPuffy » Mon Apr 14, 2014 8:10 pm

You never know pinky, the Pain Clinic could come up with something that helps. For me, it gave me the chance to try acupuncture, which I found really helpful. I'm now trying to find a suitable local therapist to carry on with it. When your appt comes thru, go with your mind as open as possible, and see what they have to say.

Just a thought, with the seizures you've had, could they enable a neuro referral for you to see about the Topamax???


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Re: Topamax??? Also fluid on knee

Postby pinky1 » Tue Apr 15, 2014 9:17 pm

Thanks Fluppy,
Well it would be great if they would refer me or even if they would ask advice from the consultant at the seizure clinic. But I don't want to ask and my GP doesn't seem bothered that consultant suggested I come off amitryptiline because it can lower my already low seizure threshold. She said something like "well we don't really know if it was an epileptic fit you had"?!?!? Well it was certainly a grand mal or tonic clonic seizure or whatever they're called nowadays and the consultant agreed. It went on for nearly 4 minutes and I wasn't breathing while my friend was on the phone to 999! So I basically said that and my GP just said she meant I wasn't epileptic.
Doesn't seem like she's taking it seriously even though the consultant has and told me to be very careful about taking anything prescribed, over the counter or herbal.
Hopefully the pain clinic can help. Ami's aren't doing much at 30mg but I'm not chancing upping them.
Will just have to deal with it till my referral comes through
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