Left Kidney Pain

[davidmc]

Firstly, as far as I am aware, we have no family history of kidney problems.
I am taking Topamax at the moment.
But recently have started getting a pain where my left kidney would be, was hoping it would stop. But it has got worse since last night and has been constant since then (had it before then but not contstant).

Is this anything to worry about? Will I have to come off the Topamax (there is no other treatment available for my partial seizures as the neurologists beleive only being unconscious classes as a seizure, they have even said as much in a letter to my GP, this medication was prescribed for my headaches, so if I have to come off it, my partial seizures will be complately un-managed.).

 

[Nakamova]

Unfortunately, Topomax can cause kidney stones, so that would be a pretty likely guess for what's going on. Drink a lot of water, and let your GP know -- he'll let you know what your options for dealing with the kidney stone are.

As for getting a replacement med for the Topomax -- there has to be some way to find a different neurologist who actually knows what epilepsy is -- the majority of epilepsy seizure disorders do NOT involve full loss of consciousness. There are plenty of reputable online sources that will explain about partial seizures. (Here's one: http://www.mayoclinic.com/health/epilepsy/DS00342/DSECTION=symptoms ) Maybe you can get your GP to listen and advocate for you, even if your current neurologist won't.

 

[davidmc]

Unfortunately, Topomax can cause kidney stones, so that would be a pretty likely guess for what's going on. Drink a lot of water, and let your GP know -- he'll let you know what your options for dealing with the kidney stone are.

As for getting a replacement med for the Topomax -- there has to be some way to find a different neurologist who actually knows what epilepsy is -- the majority of epilepsy seizure disorders do NOT involve full loss of consciousness. There are plenty of reputable online sources that will explain about partial seizures. (Here's one: http://www.mayoclinic.com/health/epilepsy/DS00342/DSECTION=symptoms ) Maybe you can get your GP to listen and advocate for you, even if your current neurologist won't.

Thanks. I already drink a lot of water as I have excessive thirst (diabetes and thyroid tests have come back normal).

I don't usually have one particular neurologist, due to the habit of them discharging me before arranging tests.
I have however, since found out that one particular neurologist I have seen and complained about (the hospital sent a response which was basically a white-wash) has made inappropiate and unprofessional remarks, including homophopic ones. He is still making unprofessional remarks in a letter he sent to my GP (I attended special schools when I was younger, he uses this to discriminate in the letter), why he has not been struck of if concerns have been raised about his conduct before, I do not know.

I am, however, seeing a neurologist in Liverpool next month, my doctor reckons they are better there, I hope he is right as I have waited more than a decade for a diagnosis.

 

[Nakamova]

I'm glad to to hear that you can see a different neuro. The other guy sounds absolutely awful and unprofessional.

 

[epileric]

Also remember that all doctors, including neurologists have a regulating body. If your neurologist was really that bad you might want to consider submitting a complaint.

I know (at least in Canada) that even if they don't take action the complaint stays in their file. That can make a difference in how future complaints against this individual are handled.

 

[Jfpinell]

It's possible you could have a UTI....those infections can be SERIOUS if the go up to your kidneys. I would check with you Dr. right away! Bladder infections don't always cause symptoms you'd notice. (I've had several.)

 

[davidmc]

I'm glad to to hear that you can see a different neuro. The other guy sounds absolutely awful and unprofessional.

Thanks. Hoping I won't have to make too many trips there as it's two train journeys away.

Also remember that all doctors, including neurologists have a regulating body. If your neurologist was really that bad you might want to consider submitting a complaint.

I know (at least in Canada) that even if they don't take action the complaint stays in their file. That can make a difference in how future complaints against this individual are handled.

I did make a complaint about him and another consultant and staff losing my details. They took longer than promised investigating then sent a response which was basically a white-wash, "I do not believe the information was incorrect" - I have proof the information sent to my GP was incorrect, but they spent so much time trying to defend the hospital and its consultants in the letter (the complaint was sent to the Chief Executive of the hospital as the PALS service were not doing anything), that my complaints have not been resolved. It states however, that the next stage is the Obusdman, so hopefully they will see through the denial in the letter. If not, I have proof, so will see where to go from there.

It's possible you could have a UTI....those infections can be SERIOUS if the go up to your kidneys. I would check with you Dr. right away! Bladder infections don't always cause symptoms you'd notice. (I've had several.)

I have just phoned my doctors surgery and have an appointment now for 11am tomorrrow morning.

 

[Endless]

Thanks. I already drink a lot of water as I have excessive thirst (diabetes and thyroid tests have come back normal).

Topamax is famous for causing excessive thirst. I'd down water by the pint. Then I'd fill up my glass again and chug-a-lug more. Never ending process.

Everyone is right. You must drink lots of water on topamax to avoid kidney problems. It's helpful that it makes you crave the water.

As for a UTI, the test is simple and pain-free. Go see your general practitioner.

Hope you feel better soon.

 

[davidmc]

Topamax is famous for causing excessive thirst. I'd down water by the pint. Then I'd fill up my glass again and chug-a-lug more. Never ending process.

Everyone is right. You must drink lots of water on topamax to avoid kidney problems. It's helpful that it makes you crave the water.

As for a UTI, the test is simple and pain-free. Go see your general practitioner.

Hope you feel better soon.

I've had excessive thirst for years, my thirst has stayed the same on the Topamax.
I sleep with a 2 litre bottle of water by my bed as I am always thirsty. I drink more than the reccomended daily amount of water.
I drink several litres a day (at least 5 usually).

 

[Meetz1064]

I'm on

Topomax, as well as 3 other seizure drugs, and I drink a MINIMUM of at 4 liters of DRINKS per day. Most of that's water. Coffee's mixed in a little, a smoothie, and occasionally a few other things.

Yup, I have that thirst issue, too.

 

[davidmc]

Topomax, as well as 3 other seizure drugs, and I drink a MINIMUM of at 4 liters of DRINKS per day. Most of that's water. Coffee's mixed in a little, a smoothie, and occasionally a few other things.

Yup, I have that thirst issue, too.

I've had the thirst issue for years, it started whilst I wasn't on any medication. Also had excessive sweating for years. Only been prescribed the Topamax in the last couple of months and never been on any other kind of anti-seizure medication.

 

[Chel]

I have chronic kidney stones, but am still taking Topamax because it's helped my E. We've long since accepted kidney stones as part of my medical make-up, that I need to drink a lot, keep certain foods out of my diet, and that I'll have one that needs removing every two or three years.

What's one more cause?! I'm going to get the stones anyway, regardless of taking Topamax.

What I'm getting at, is if Topamax is working for you, and is your only/best option, I wouldn't go off it just for the sake of the occasional stone. However, as others have mentioned, there could be other causes for your pain, such as a UTI. Definitely worth a trip to your GP/PCP.

cheers

 

[davidmc]

I have chronic kidney stones, but am still taking Topamax because it's helped my E. We've long since accepted kidney stones as part of my medical make-up, that I need to drink a lot, keep certain foods out of my diet, and that I'll have one that needs removing every two or three years.

What's one more cause?! I'm going to get the stones anyway, regardless of taking Topamax.

What I'm getting at, is if Topamax is working for you, and is your only/best option, I wouldn't go off it just for the sake of the occasional stone. However, as others have mentioned, there could be other causes for your pain, such as a UTI. Definitely worth a trip to your GP/PCP.

cheers

I'm seeing my GP at 11am today. Wouldn't have gone on Topamax if I could have helped it, but because of the neurologists thinking that a seizure equals unconsciousness and not knowing a thing about partials, they wouldn't even let me try any medication at all.
Because I get headaches, I asked my GP if I could try Topamax, he advised against it but said I could if I really wanted to (I wanted it for the partial seizures really, the headaches did bother me a lo, but not half as much as the seizures), so it was the only ant-seizure medication available to me.

What should I do if my GP doesn't do or doesn't arrange any tests?

 

[Chel]

I have to correct myself here - I use Topamax for migraine, not epilepsy. However, after years of near-constant head-banging pain, it's cut the migraines down to rare events. I can live with a kidney stone every couple of years.

Tegretol is my E drug.

I'm old (47), I have E and memory issues. So shoot me. Put me out of everyone's misery. *snicker*

Sorry to mislead.

 

[davidmc]

I have to correct myself here - I use Topamax for migraine, not epilepsy. However, after years of near-constant head-banging pain, it's cut the migraines down to rare events. I can live with a kidney stone every couple of years.

Tegretol is my E drug.

I'm old (47), I have E and memory issues. So shoot me. Put me out of everyone's misery. *snicker*

Sorry to mislead.

I have memory problems too, I used to write a list of my symptoms for the neurologists but gave up after none of them could be bothered reading them.

Saw my GP, he said he doesn't think it's anything to worry about but if the pain is not gone in a week to come back and he will arrange a scan. But he also wants me to cut down the Topamax 25mg, I'm not on a high dose as it is and still getting the auras and ocaasional partial seizures.

On another note, the genetics counseller has read the notes my sister typed up regarding my past and present medical history and developmental delays when I was a child and, despite them being long, she has read it all and phoned up my GP excited as she thinks I will be an ideal candidate for genetics testing. lol Sounds like she loves her job, which is good.

 

[davidmc]

Still getting the pain and it's been nearly a week. But it's worse at some times than others, does that mean it's not a kidney stone or anything like that?

I didn't cut down the Topamax as like I said, I'm not on a high dose at the moment as going up gradually and the last thing I want to do is cut down. My doctor might not be happy but it's my body and the Topamax is allowing me to do things I couldn't without it. Plus I will be starting a voluntary job soon (if I'd have had medication on the last voluntary job I wouldn't have had to stop doing it).

 

[Loopy Lou]

Do you mind me asking which hospital you had the problem with?

I go to the Royal Preston because i've had nothing with bad dealings on behalf of my local hospital. Ok, not to do with me, but i was advocating for someone with a learning disability.

Would you be able to change neurologists?

Edit - i know, everything seems to be a struggle on the NHS, for getting second opinions and such

 

[davidmc]

Do you mind me asking which hospital you had the problem with?

I go to the Royal Preston because i've had nothing with bad dealings on behalf of my local hospital. Ok, not to do with me, but i was advocating for someone with a learning disability.

Would you be able to change neurologists?

Edit - i know, everything seems to be a struggle on the NHS, for getting second opinions and such

It was Salford Royal (formerly known as Hope Hospital).
They have offered me an appointment in July with someone who apparently knows about partial seizures instead of the neurologist I was going to see at a later date. I will be seeing a neurologist in Liverpool next week as well, so thought I would accept the Salford Royal one as back-up as I don't have much faith in neurologists given their track record so far.

 

[Chel]

Still getting the pain and it's been nearly a week. But it's worse at some times than others, does that mean it's not a kidney stone or anything like that?

Pain variation is perfectly normal for kidney stones, David. It depends where the stone is, but if it's blocking a tube through which urine normal passes, sometimes fluid will pass through, and sometimes it backs up behind the blockage. When it backs up is when you get the pain. That's renal colic.

I've had a stone in my bladder which didn't so much hurt as tickle. I constantly felt like I wanted to pee!

It's time for a scan, isn't it?

 

[davidmc]

Pain variation is perfectly normal for kidney stones, David. It depends where the stone is, but if it's blocking a tube through which urine normal passes, sometimes fluid will pass through, and sometimes it backs up behind the blockage. When it backs up is when you get the pain. That's renal colic.

I've had a stone in my bladder which didn't so much hurt as tickle. I constantly felt like I wanted to pee!

It's time for a scan, isn't it?

Thanks. Yeah, I need to phone my GP but I didn't cut down the Topamax like he suggested as it's helping me so I doubt he will be happy with me. Oh well, he can moan but at the moment I cannot get any other anti-seizure medications as I am on this for headaches and as my last EEG test came back normal, so it's "not seizures." And that is from a neurologist who has published research papers! Methinks he needs to do some research. So cutting down wasn't something i was willing to do when I've had respite from the partial seizures.